The Cruse Kids - Our journey living with biliary atresia and liver transplant

Pediatric Liver Transplant - Children's Hospital St. Louis

2012-01-24T19:11:00.000-08:00

Malakai was born on September 24, 2008. We brought home a bouncing baby boy who passed all his newborn tests. But three weeks later, he started to develop jaundice of the skin and eyes. I called his pediatrician who recommeded I bring Malakai in that afternoon for a blood test. I knew at that point they were concerned because it was already 4:00 and she wanted me to bring him in that day. His bilirubin was elevated so we were told to come back in the morning for a repeat test and an appointment. They did more extensive blood tests the next day and sent us to our local Children's Hospital in Indianapolis.

After a long couple days of testing, we were told that, more than likely, our baby boy had Biliary Atresia. Biliary Atresia, or BA, is a rare liver disease that affects newborns. Without surgery, children born with BA would not live past the age of 2. With the surgery, called the Kasai Procedure, 50% of patients would need a liver transplant before age 5.

Malakai had the Kasai on November 6, 2008. We were thrilled to take him home only 5 days after. He progressed slowly, but we started to see the whites of his eyes come back. By January, his numbers were coming down and we thought his Kasai had worked. He spent a few days in the hospital mid-January.

Mid-February we were told at his scheduled clinic appointment that he wasn't gaining weight like they wanted and they were going to admit him for a few days and insert an NG tube to feed him. They asked if we wanted to stay that Friday or wait until the following Monday. We decided to wait. But he had other plans. That night, he started acting very lethargic so we decided to take him to the ER. He had a very low sodium and they admitted him to the Pediatric Intensive Care unit. We had no idea that we were going to spend the next 4 weeks in the hospital. From there it was a constant battle to keep his levels stable. He had severe ascites, which was fluid on his belly. He looked 9 months pregnant. They drained his stomach multiple times but just couldn't get him stablized enough to send him home. It looked like we were heading down the road where transplant was our next stop.

The doctors had told us about Children's Hospital in St. Louis. Unlike the hospital we were at, Children's Hospital did all three types of liver transplant. Whole liver, split liver and living donor transplant. We were going to go to Cincinnati for their liver program, but Michelle Nadler, nurse practioner for the transplant program at St. Louis called and said they could transfer Malakai to their hospital the next day. It was a whirlwind, but on St. Patricks Day 2009, we were introduced to the wonderful liver transplant team in St. Louis.

The first person we met there was Penny Scholl, transplant coordinator at Children's Hospital St. Louis. She was, and still is, someone we trust with Malakai and love dearly. I feel like I can call her anytime and ask her anything to do with transplant. If she doesn't have an awnser, she will get one for me. And no question is too silly for her. She understands the uncertainty that we have, as liver parents. The second person we met was Michelle Nadler. She has an incredible memory and can remember things about Malakai and his journey that I do not even remember.

Malakai was listed for liver transplant on March 20, 2009. My mother in law, Cindy, began the testing to become a live donor for Malakai. His first call came on April 24. We did not have peace about that liver, and after much discussion, we decided to decline that liver. The second call came on May 1. We packed everything and head to St. Louis. He was prepared for surgery and we were given an approximate time of 8:30 pm for the start. At around 8 pm, surgeon Dr. Chris Anderson came in and told us it wasn't going to work. The liver they had for Malakai just wouldn't work in his little body. We went to a hotel that night, disappointed and unsure about the future. Would another liver come in time? Should we have taken the first liver? We were second guessing everything. Cindy's tests came back that she would not be able to donate to him. We felt like time was running out.

We went back to St. Louis on May 6th for a clinic appointment and decided because he needed Albumin for three days thru an IV that we were going to move out to St. Louis. We rented a furnished apartment and my in-laws drove out with our then 2 year old daugher, Makena. The doctors told us then, Malakai needs a new liver. And he needs it soon. Within 2 weeks. It was so scary to hear those words from a team of doctors we trusted with his life. My identical twin sister called that day and asked what blood type Malakai was. She was currently 9 months pregnant and found out at her doctors appointment that our blood type was O+. I was certain that my blood type was A+ and since Malakai was O, I didn't think I could dontate. I was then rushed into testing to see if I was an acceptable donor. We were sceduled for me to give a portion of my liver to Malakai on May 18.

We went to the Botantical Gardens that Mother's Day, May 10th. He was a tiny 7 month old baby with a NG tube in his nose and barely weighed 10 pounds. I remember thinking as I pushed his stroller that it was Mothers Day and a mother out there was spending their last Mothers Day with their child. I knew that in order for Malakai to live, we needed an organ donor. Most likely a child.

We decided on the morning of May 12 that we were going to take the kids to the zoo. I was on the internet searching for the hours when my phone rang. Anyone waiting for a transplant knows, that when your phone rings, your heart skips a beat. "Unknown" came up on my caller ID and I just knew it was it. I awnsered and Penny Scholl said "Third times a charm" I know I probably stumbled all over myself. This was it! We took a short nap and packed up to head to the hospital, a whole 5 minute drive. We arrived around 1 pm and he was sent back to the OR that night. He recieved his Gift of Life in the early morning hours of May 13. I can't even begin to describe the emotions I felt that night. My dad had a double lung transplant in August 2003 and never woke up. I expected the same would be true for Malakai. I was completely terrified that he was going to die. We slept in the waiting room of Children's Hospital St. Louis. Every few hours the nurses would call and give us an update. I feared the worst everytime they called. I read a lot on line about liver transplants and some fellow liver moms sent me pictures of their kids shortly after transplant. It helped but all I wanted was for them to say he was done and SEE him again.

What seemed like an eternity later, out walks Dr. Jeffrey Lowell. I think I held my breath until he said "He's OK" I wanted to hug him. We were able to see him shortly after 7 am on May 13. He was taken off the vent as we were walking into his room. He was doing so well. He is such a fighter, always has been. I have a feeling he always will be. Dr. Lowell said he was the skinniest (if that's a word) baby he had ever transplanted. You could literally count every rib on his chest.

He spent about 3 weeks at Childrens, another week in St. Louis and we were able to head back home. It was a journey I will never, ever forget. I'm so thankful to every doctor, nurse and friend we made while at Children's Hospital St. Louis. They treat Malakai like he is a part of the family, not like he's a patient. I'm not sure where we would be without the team at Children's.

I'm also forever grateful to our precious donor, Sherae. We pray for her family every night and hope they know how special they are to us. We could never repay them for the gift they gave to our family. Malakai was given a second chance because they chose to Donate Life.

Happy Birthday, Kaiden!

2012-01-22T18:49:00.000-08:00

We celebrated Kaiden's first birthday at Chuck E Cheese and had a birthday party at our home yesterday. What a sweet boy he has become. I first called him my little curveball because he was not planned for, but now I cannot imagine my life without him. He started out with a head FULL of almost black hair and now his hair is light and almost blonde. He's crawling, pulling up on furniture and crusing around furniture with no desire to walk at all. I will stand him up and he sits right back down. Won't even try. That's ok with me though. He can stay a baby as long as he likes :) He's daddys little boy and sometimes I feel like he doesn't even like me. But I know he does, because when he cries he says MAMAMAMA....haha. I can't wait to see what God has in store for his life. He's a little bundle of energy and he goes, goes, goes. 2o12 is going to be a great year and I'm excited to watch all of our kiddos grow and thrive.

Tonight I took Makena to see Disney Princess on Ice. It was a "Girls Night Out" which she loves. She is always asking to spend one on one time with mommy. Who could say no to that?? Anyways, as we were going in we saw a homeless man sitting under a bridge with a cup and sign that read "homeless, anything will help, God bless" When we passed him, Makena said "Mom, that's weird!" I told her that it wasn't weird and that some people don't have homes or food to eat. On our way out, we gave him $2. He said "Thank you, young lady" She lit up. She was so excited to help him out. When she prayed before bed, she asked God to give him a warm place to sleep. I don't care if he truly needed the money. That was a huge lesson for her. I am so proud of the little lady she is becoming. I'm so blessed.

Hospitalization December 2011

2011-12-30T20:16:00.000-08:00

It has been far too long since I updated this blog. I have been so thankful to have this blog to remember the good times, and the bad, throughout our journey. I want to start with our most recent hospitalization, then I’ll try to fill in with some of the details that I’ve missed out on posting about. Not just for those who may read, but for me in the future as well!
Thursday, December 15, Malakai had complained in the late afternoon that his belly hurt. I made dinner and he said he wasn’t hungry. I made him a plate anyway, and told him it was there when he was ready. We all ate and he laid down on the couch. He got up and said he was going to get sick so I told him to go to the bathroom but there was someone in there. He threw up on the floor and I cleaned it up and told him to go lay back down. He threw up again and I noticed it was pink. I asked him what he’d eaten and he replied “a poptart” which made sense. Then the third time, he threw up about 6 or 8 small blood clots. This is obviously not normal, so I immediately called St. Louis on call doctor who told me that if he threw up any more blood or developed a fever to bring him into the ER. Not 5 minutes later, he threw up what looked like pure blood. I rushed him up to the ER at Riley and we were admitted into the ICU. His labs looked good, but he showed positive for blood in his stool. We knew he was bleeding, we just didn’t know where. He was given Zofran and fluids and he started to act more normal. The docs from Riley were planning to do a scope but I told them I wanted them to contact St. Louis before they touched him. The GI didn’t like that. He rolled his eyes and walked out the door. It made me so mad because I felt like he was angry that I wanted our transplant hospital to be calling the shots. It’s nothing against the docs at Riley, but Malakais primary transplant docs are at SLCH and if he has ANY procedure at all, he has it done there. I don’t take Malakai to St Louis because it’s convenient or fun. I take him there because the team knows him best there and I feel like he’s in better care there. He didn’t like being there. It has certainly gotten more difficult for him the older he’s gotten. He kept saying he wanted to go home, he wanted to sleep in my bed, he wanted his sister, his dad, his brother. Anything to get outta the hospital. St Louis sent for the transport team and within a few hours of waking up the next morning, Friday (December 16) we were flown out to St. Louis. To top it all off, it was Makena’s 5th birthday. I was so sad that I didn’t get to wake up and make that day special for her. She had been counting down the days until her birthday for over a week and I missed being there for her. It really broke my heart. Thankfully, she was well taken care of by Daddy and my sisters.

We arrived in St. Louis and were admitted to their ICU. After an ultrasound, they determined that his portal vein had re-narrowed. He needed to have the venogram, or angioplasty re-done. He’d had the same procedure done in July 2011. Basically the vein from his liver to his bowel was narrowing and they just had to balloon it back open. Josh arrived out in St. Louis late Friday night. Malakai’s procedure was done on Saturday morning and did very well. He was a little nervous before. I think he thought they were going to cut his belly open. He knows they took out his old liver and replaced it with a new one, and that’s how he got his big scar. I convinced him he was going to be ok and they weren’t going to do another transplant but he was still pretty nervous. Thankfully they were able to give him meds to relax him and he didn’t even realize I wasn’t going with him. He had to stay the night Saturday night, mainly for observation. He then developed a fever shortly after the venogram and they decided to do blood cultures to make sure they hadn’t “stirred anything up” in his liver and caused an infection. He didn’t have anymore fevers after that so we were able to go home Monday afternoon. We go back in January for a repeat ultrasound to check and make sure his portal vein is still as open as it should be.

Then we all got a nasty stomach bug on Christmas Eve and woke up early in the morning vomiting and had severe diarrhea. Malakai, Makena and I all had it. It was awful. I ended up taking him to the ER for fluids around 3:00 on Christmas Eve. We missed our annual family get together for the second year in a row; last year I was on bed rest. After fluids and IV Zofran, we were sent home around 7 pm and able to spend Christmas at home together.
I will post again soon about our Make A Wish trip to Disney. It was an incredible experience that I will never forget. We had so much fun and it was literally a trip of a lifetime.

A few pics from our hospital stay....

Malakai on the stretcher being transported from Riley to St. Louis Childrens Hospital. He was excited to ride in a plane and even got his own pilot wings :)

Sleeping peacefully (as peaceful as you can in the hospital!)Malakai with our one of our most favorite nurses, Michelle Nadler. She is AWESOME!!

Playing with the train table in the Child Life playroom

Malakai and Daddy with Miss Penny (Scholl) She's pretty awesome, too.

Malakai with one a great nurse, Erika. We were lucky to have her two days in a row :)

More pictures!

2011-12-30T20:06:00.001-08:00

I can't believe its been over a year!!

2011-12-30T19:19:00.000-08:00

I am almost ashamed it's been so long since I've blogged! We moved to our new house and we didn't have internet here until about a month ago. Which really isn't an excuse, but it's my excuse :) I only used my phone for the internet and couldn't update blogspot on my phone.

Anyways, we welcomed our newest member into our family on January 18th (the day after my birthday....I really thought we'd share a birthday, but he waited a few hours to have his own!!!) Kaiden Zion Cruse was born January 18th 2011 weighing 8 pounds 4 ounces and 20 inches long. We didn't have a name for our poor baby boy until we were literally leaving the hospital. We just could not agree! He's been an absolutly wonderful addition and I can't imagine our life without him. He's been the best baby. He just recently started to really crawl. For the last few months he's been army crawling to get around. He's a sweet boy and I could go on and on about him :)

First picture of me as a mommy of 3...I remember thinking "wow, I can't believe it. I have 3 kids!"

Long overdue update!

2010-10-28T09:52:00.000-07:00

Some recent pictures!!!

I don't even know the last time I updated, but I know it's been too long! We found out we are having another little boy! He still doesn't have a name, but we have 12 weeks left in the pregnancy to come up with one. Makena was very disappointed that he was a boy. She really wanted a sister. I told her I would be coming home with balloons and if they were pink, she was having a sister..if they were blue, it was another brother. She came running around the corner when she heard the door open and the look on her face was pure devastation. Poor thing, she really was upset. Shes gotten used to the idea now, and even acts excited. But still asks when she is going to have a sister...

Malakai is doing WONDERFUL!!! He is now completely out of all therapy. No more physical therapy, occupational or nutritional therapy. He's well on his way to being a normal little boy!! He's talking up a storm and developing his own personality. He's just recently learned to climb out of his crib, and thankfully has only done it once. But he's fighting naptime, and hasn't napped in over a week! He is starting to make himself throw up to get out of bed, something I never dealt with, with Makena. We have started to potty train and he's actually doing well. At first, he had no interest in it at all. But the last few days he's shown alot of interest and I am hoping he's trained, at least for the most part, by the time his brother gets here!

We had a big birthday party for him! Bouncy House, real cupcakes (with his dairy and egg allergy, he never gets treats like that!) plenty of Mickey Mouse and lots and lots of fun! He had a blast and we had a great turnout! He was saying "Thanks for comin'!" as people were leaving, so so cute!!

We go to St. Louis in a few weeks for his check up clinic visit. We havent been since May and really it's just for an ultrasound to check is portal and hepatic vein (where he had the narrowing) I'm excited for all of them to see him, he's really changed so much since then!

We recieved a letter from our donors family this week. It was such an emotional letter, awnsering a lot of the questions I have had since his transplant. They sent us pictures and she was such a beauiful, vibrant girl. I mourned for her family. They lost a very important member of their family. I've always known it, it just made it seem more real I guess. I hope to eventually build a relationship with them and maybe one day get to meet them. I'd love for them to be able to meet the little boy who's life they saved. They are forever in my heart and I love them.

Another hospital stay....

2010-08-03T12:44:00.000-07:00

Malakai started developing fevers and becoming irritable a few weeks ago. I took him to the doctor who diagnosed him with an ear infection and started him on an antibiotic (Augmentin) After 8 doses, he seemed to be getting worse, not better. He basically stopped eating and would not let me put him down. He was in my arms, in the rocking chair, all day for four days. By Sunday, I thought he was looking pale and he was almost lethargic. After calling St. Louis and speaking to the doctor on call, he advised we take him to the ER to get him checked out. After three days at Riley, blood, stool and urine cultures all coming back negative, they were getting ready to send us home. Then he had a stool test positive for blood. After that, they set up an ultrasound and called St. Louis to figure out what they wanted to do. The ultrasound revealed that his portal vein (the vein going out of his liver) was narrowed. He had a narrow hepatic vein in January. The docs said for both of the veins to be narrowed post-transplant is rare. So we were flown to St. Louis on Wednesday evening and he was scheduled for his procedure Fridaymorning. They went in and ballooned his vein to open it back up. Because of his size, they didn't put a stent because he has alot of growing to do. Because of his multiple ear infections, and his body taking extra long to fight them, they went ahead and put tubes in his ears at the same time. I was thankful they were able to do both procedures at the same time with one anesthesia. He went back to eating and drinking normally after the procedure and was discharged Saturday morning. We were so glad to be home, and I think Makena was equally glad we were home! Poor girl, she's really starting to understand more when I'm gone. It was difficult this time being in the hospital, being pregnant and all. I slept in the bed with Malakai, and he wanted to be touching me at all times. Doesnt make for a very restful sleep. I'd do it all over again if I had to (praying we don't for a very, very long time) I'm just thankful he's here and is able to live a normal life :)

Long overdue update

2010-06-24T11:53:00.000-07:00

We have yet to get internet out at our new house and therefore I am never on an actual computer. I came into the office today to work so I decided while I had a few minutes, I would update this blog. I've been a terrible blogger post transplant. But I guess it's good that he's doing so well that I don't have much to update :) He's a walking, talking toddler. He's weaned from breastfeeding (Hooray!!) He loves to mimic his sister and he's finally been trying new foods and drinks! His labs were stable last month, praise God. He's sleeping through the night, although he's an early riser (Usually around 7:15) He's getting stronger in his physical therapy. You should see him try to jump. It's hysterical. It looks like he has a peg leg. His core muscles are what needs work but I think in a few months he will be caught up to his age. We've taken his Occupational thearpy down to only once a month...he's doing so well. He's also going to be a BIG BROTHER. Yes, I am indeed pregnant. Almost 10 weeks to be exact. This was not a planned pregnancy in the least. Malakai is still so needy and with his health being fragile, we were not expecting to have another baby at least until he was 3 or 4. But God has other plans :) We are due January 24th. Not only am I expecting, Josh's sister is pregnant with a little girl due in September and his brothers girlfriend is expecting a baby in December. Josh's cousins wife, we are close to just found out they are expecting as well. Four new babies in the Cruse family!! Makena really wants a baby sister and says if it's a boy, she will be sad. I'm trying to prepare her in case it is a boy. She understands but I think will still be disappointed if it's another brother. She will tell complete strangers "My mommy has a baby in her belly...but we don't know what it is. Only God knows. He gets to choose!" It's very sweet how interested she is in the pregnancy. She wants me to read her the pregnancy books and asks 1000 questions. Her mind is much different than when I was expecting Malakai. We're stuck with baby names, trying to decide if we stay with the "M" or move onto something new. We have plenty of time, I suppose :)

I am thinking of writing our donor family again. I sent the first letter in March and haven't heard back. I think about their angel often and what she has done for our family. She gave us our son back. I ran across this picture on my computer and it makes me want to cry. He was so thin and so, so sick. Here he was just weeks before his transplant. 7 months old and probably only 10 pounds.
And here is at Emma and Jack's birthday party riding a big kid bike. He really wants to be big :)

Messy after breakfast...complete with a baby food unibrow!

Here is my little guy at the zoos splash park. He loved being able to run around with all the other kiddos...I loved watching him. And check out that belly...doesn't he look great?!!!

Happy Liver Day!!

2010-05-14T10:55:00.000-07:00

We celebrated one year with Malakai's new liver on Wednesday! The day was beautiful. I reflected alot on the past year and just how thankful I am for his donor angel and her family. Without a new liver, he wouldn't be here and I am forever grateful to them. My baby has endured alot of hardships over the last 18 months but I am so, so thankful for him to enjoy life and to be healthy.

We went to dinner with our immediate family...Rita, Brent, Clay, Addie (Happy 1st Birthday, girlie girl :) Sarah, Emma, Jack, Grammy, Billy, Nana, Papa and Uncle Jeremiah. I brought along butterfly cupcakes...the butterfly is the symbol for organ donation.

We went on vacation last week to Orange Beach, Alabama. I will be posting pictures as soon as I can find my camera cord. We had a blast! They both did well on the flights and behaved very well. Both kids enjoyed the beach and the pool. We had a little scare while we were down there. I had to take Malakai to the ER in Pensacola to have his blood drawn. He had a bloody stool, and with his internal bleeding in March we had to be extra cautious. Everything checked out OK and we enjoyed the rest of our time. But man, it was scary!

It's been a month since my last update!!

2010-04-23T11:26:00.000-07:00

My handsome little man fishing with DaddyEaster egg hunt
Makena and Malakai with the Easter Bunny

This is what he does when you ask him to do his "Home Alone" face :)

Kids at the Butterfly Gardens

After being released from the hospital, Malakai has done very well. He was diagnosed with RSV the day before we were discharged so we had to postpone his venogram he was supposed to have on that Friday. We were told to get labs the following Monday and then again two weeks later. His labs have not only stablizied, they've improved! The venogram is not even necessary at this point! Praise God!! His hemoglobin was 10 at his last draw. The lowest it got was 5.2 and it should be 12. So we ARE getting there! His belly is flatter than it's been in months and he's even walking!! I am beyond proud of him. He started standing on his own, getting up by himself and as of the beginning of this week, he started actually walking. 10 - 12 steps at a time!

We are finally getting settled into our new home. Makena loves having the space to run, although her being so far away from us at night has proved to be a little scary for her. She ends up in our bed about 50% of the time...which usually means she sleeps later. Malakai likes the new place because of the cows. We can hear him through the baby monitor in the morning saying "cow, cow" He thinks he can see them through his window. We do have about 50 cows that live surronding our new place. We walk almost daily to go out to see them.

His vocabulary is constanty growing. He says Nana and Papa, Mama and Dada. Jack, Emma, he calls Makena"dit" or trying to say Sis. He says ball, cow, drink, bye, hi, baby, yellow, blue...I'm sure there are more that I'm forgetting. It's so amazing watching him grow into a toddler. He looks up to Makena and wants to do the things she doing.

We are doing the Liver Life Walk on May 22. It's downton Indianapolis, if anyone is interested in walking with us, please email me and let me know. Carah117@yahoo.com. I'm thinking about ordering some t-shirts for everyone walking with us.

Update via Aunt Sarah

2010-03-24T08:42:00.000-07:00

Carah has asked me to update her blog nearly 100 times over the last week and I continued to forget. She just called me and said she would beat me up if I didn't get on and update. I am going to copy and paste her status updates from Facebook - so I hope you get enough details from them :)

Thursday, March 18 @ 11:47am
Back in the ER. Malakai had blood in his stool this morning. They're gonna get his vital signs, hoping and praying this is minor and he will not be admitted.

@ 2:59pm
His hemoglobin level is very low at 5. Blood transfusion soon and scope. Possible transfer to St Louis. Pray for him.

@ 5:58pm
Well, we are being admitted ;( At least one, if not two days. He's unable to eat or drink and is very unhappy. They will watch his levels and will then decide which route to take. They need to find the source of bleeding. Docs here at Riley and St Louis decided it was ok for him to stay here...

@ 10:09 pm
Has your heart ever hurt so badly for your child you feel like you just need to cry? My poor baby is miserable because he can't drink. He's asked for one a thousand times. I just wanna run out the door with him. Please pray they find some awnsers, soon. I hate hospitals !

March 19 @ 9:43am
Malakais hemoglobin continues to drop, even after his blood transfusion which suggests he is still bleeding. He is going into the OR in 20 minutes for an exploratory scope. Hopefully they locate the bleed and are able to stop it. He's resting peacefully at the moment, although last night was very rough. I actually slept in his crib for part of the night.

@ 11:42am
He is out of the scope. Unfortunately, they didn't see anything abnormal. He is going to get a PICC line inserted and the team here is calling St Louis to come up with a game plan. Probably staying here awhile unless something big happens. Waiting to go see my little mommas boy :)

@ 2:26pm
He's currently undergoing a test that tagged his red blood cells to see if they can find the bleed. This will only work if he is actively bleeding. He's sleeping, which he needs. They don't think this will show much but it was an easy test to rule out.

@ 10:50pm
Seriously, it's 10:48 pm and Malakai is cruising around his crib, watching tv, laughing and playing peek-a-boo. Are you sure this kid had three procedures today and bleeding internally? He sure is a trooper :)

March 20 @ 9:53pm
Malakai continues to be up and down with his hemoglobin and hematocrit levels. He had normal stools all day until tonight when there was blood again. My instincts tell me he will be air transfered to St Louis on Monday for further testing. I will go home tomorrow while Josh is here with him and shower and pack a bag. I... just want him better. I feel like we have yet to really see the REAL Malakai. A healthy Malakai. Please continue to pray...

March 21 @ 8:56pm
thankful for a break from the hospital. Daddy and Papa came up today and I was able to eat lunch with Makena, take a nap, shower, eat dinner and I'm now back with Malakai. Hoping tomorrow we have a game plan...

March 22 @ 4:13am
It's 4 am and Malakai is wide awake watching Mickey Mouse Clubhouse. I'm sure his routine will be hard to adjust when we go home. Oh, the joys of hospital stays...NOT!

March 23 @ 10:11am
His hemoglobin rose from 8.9 to 9.5. Liver numbers are a little high but it's because his Tacro (anti rejection medication) level has been low (common with illness) everything else looks good. They are cutting his iv meds again today. Chest X Ray because he sounds a little raspy but it's more procautionary. Looking at ...Thursday as a discharge day. Hoping his bloody stool doesn't come back with the decrease of his meds.

March 24 @ 11:40am
Ok. They're doing another procedure at 1:00, although he won't have to be sedated. This will look to see if he has an abnormality causing the bleeding. Long story, I'll fill you in later if it shows something. Still going to STL Friday so hoping to be discharged early tomorrow. Pulmonology is coming to listen to him a...nd they've sent off cultures from his nose. He's coughing and sounds crackley when he breathes. He's in isolation and may be transfered to a different floor because of the other transplant patients. Another day in the life of a transplant mom!

Latest and Greatest

2010-03-17T07:57:00.000-07:00

Well, alot of time has passed since my last post. We were unsure if things were going to go our way, but they did and now we have moved into a beautiful new home! Last week was spent packing boxes and going through our old house. We hired movers and they arrived Friday morning at 10 am. The job was estimated to last eight hours and the poor guys were at our house until almost 1 am. Yup, 15 hours. I felt so bad for them. We fed them lunch and dinner, I'm not sure what they would've done if we hadn't fed them. I think they were planning to eat when they left. We have alot of very heavy furniture, that alone is why we hired movers. We had alot of help *Thanks everyone!!!* over the weekend and are getting close to being settled. I have been fighting a serious sinus infection so I haven't been as productive as I would've liked! This new house is seriously like a dream to me. There were so many things about our old house that I had learned to live with, but didn't like. We had well water. I didn't like doing laundry or showering with well water because it was so hard. And my washer/dryer were down in the basement, which was basically storage. I had to make sure both kids were occupied to do laundry. The closets were tiny. We didn't have a garage. I could go on and on. The new house, I have my own bathroom and walk in closet. I've literally taken a bath every night since we've been there. The first day there, the washer didn't stop. It was so nice to be able to do laundry while the kids played in the living room. I was only a few steps away. There is plenty of room, everything has a place. We have a very large garage and circle driveway. Makena enjoyed riding her bike yesterday (Looooove this warmer weather!) and I'm actually looking forward to cleaning my truck out tonight! I feel very blessed. Truly blessed. Exactly one year ago today, Malakai was being flown to St. Louis for the first time for his transplant evalutation. Amazing what one year and a healthy liver can do for a family :) Thankful everyday to our donor family!

Ok, what else? The week before, I took Malakai out to St Louis for allergy testing. He had been throwing up and had very loose stools for months. We thought maybe he was allergic to something he was eating so we got an appointment set up quicker than normal and headed out there. He was tested for common allergies and some things he eats alot, that may have been causing his symptoms. He tested negative for onion, tomato, garlic, peanuts...those are the things I was worried about. He did test sensative to dairy and eggs. The transplant team started him on a steroid, Prednisone, to see if that helps. So far, so good. I've tried to cut most of the dairy/egg out of his diet, although most of what he eats doesn't have any of that in it. He's a very picky eater and we're actually going to see a feeding therapist to see what they think. Hopefully they can give us some ideas on what to feed him and how to go about new ways to get him to try new foods. While we were out in St. Louis we stopped by the hospital and met a little guy named Jax. He is currently waiting on the perfect liver. Chatting with his momma put me right back about a year ago when I was the one waiting. The wait is torture. Wondering WHEN you were gonna recieve that call. Your mind plays these terrible games and you feel like you're going crazy. I hope and pray he gets it soon...

Recently, his belly has started getting bigger again and his veins are protruding alittle more than they were. The concern here is that his hepatic vein is narrowing again (stenosis is the term, not sure how to spell it) We are scheduled to go out to STL on March 26th for another venogram to expand that vein again. He had it done on January 22, and it really shouldnt need it again. But, his was more narrow than usual so I guess maybe he's just the not-so-usual case! We are also encouraged to try to get more protein into him. They've thrown out the idea of starting a feeding tube to ensure he's getting the right nutrients, so I'm gonna try what I can to get him to eat more balanced meals. I REALLY don't want a feeding tube back. I hated that thing. He hated that thing. Life is much easier without it. And he's much cuter without it :)

Makena is growing up way too fast. I know I hardly talk about her on here. She's a good little helper, loves to feel grown up. She actually helps do the dishes and likes to wipe the counters down. When she doesn't know what you're trying to say, she'll say "What'd you said?" It's cute! She LOVES dance class! She told her Nana she learned how to "shovel" trying to say shuffle. Nana said, "Next, you'll learn how to flap." And Makena said, "I already know how to flap!" and started flapping her arms like a bird. With your feet, dear. Not your arms :) I love that little girl to pieces.

Once we get internet back at home, I will try to post some new pictures. I know it's been forever! Thanks to everyone who thinks about Malakai and prays for his health. Keep it up, we will always need it :)

Sending my letter out today

2010-03-02T08:59:00.000-08:00

I'm sending the letter to the donor family today. I'm nervous and excited. I hope to hear back from them, but I also realize there is a good possibility that I won't. I truly hope they know how much I deeply care for their family and how appriciative I am that they gave Malakai his life back. He is doing well from a liver stand point. His new liver is very happy and healthy. His numbers are stable and continue to be so. I will post the letter I wrote, but I haven't decided when. I want them to read it before I post it on here. I continue to pray for peace and comfort for them. I hope they're doing well.

"I did it"

2010-02-24T15:19:00.000-08:00

"I did it" is Malakai's first phrase. He usually only says one word. His vocabulary is definatly expanding and just a few days ago he started saying "I did it" when he did something he was proud of. Throwing a ball into a basket, standing on his own for a few seconds, etc. It is very sweet :) He started physical therapy last week and during his session, he would say "I did it" before he did anything. His therapist would say "No, you didn't do it yet" and he'd say "I did it" It was cute! He's now saying "My Mama" and pointing to me. His favorite word is still ball :)

Malakai ran a fever a few days ago. It got up to 102.4, I gave him Tylenol and it broke pretty quickly. He's had a alittle bit of a cough but seems fine. Makena is sick today. She woke up around 3 am coughing, kind of barky coughing. She came into the bed with us and I could tell she had a fever. When she got up this morning I gave her some Tylenol Cough and Cold and she seemed to be better. She's played and acted normal until about an hour ago. Her temp is elevated again and she's laying on the couch watching tv. Hopefully it passes quickly. I hate when they're sick.

Some big things could be in store for our family in the near future...we're not pregnant, LOL, but stay tuned for possible big news :)

Ashley's Gift: A Liver for LuLu

2010-02-14T18:34:00.000-08:00

I've been following a little princess, LuLu, and her journey to transplant. Their local newspaper did an article featuring both her and her donor angel, Ashley. It's a very touching story, and very emotional to read. It made it seem more real that Malakai actually recieved a portion of someones liver, and that little girl had a family. I have a letter written and I will be sending it soon. Anyways, take a look at it. The story seems like something out of a movie.

http://www.sltrib.com/news/ci_14390307

Some new pics...

2010-02-13T13:54:00.000-08:00

Malakai's 1st time in the snow He was OVER it! Get me outta these clothes!Makena actually sat still long enough for me to curl her hair...it didn't stay this pretty for more than a few hours
Lookin' sharp after his very 1st haircut

Obstruction or No Obstructon...

2010-02-11T19:02:00.000-08:00

That is the question...

Malakai wasn't allowed to drink anything past 10:45 am this morning and we were to be at the hospital at 12:45, procedure was supposed to be at 1:45. We got into our room around 1:00 and were seen by the nurse, anestisologist and then the GI doc came in. We'd never met her (or if we had, I don't remember) and she was the one supposed to do his scopes. Josh asked her if she knew why she was performing the procedure and we could tell immediately that she wasn't sure. Bottom line, she wasn't aware that he was on aspirin, and being on aspirin makes you at higher risk for bleeding. So we waited until she spoke with his doctor and another GI doc. We were given the decision, go ahead with the scope and know that he is at a higher risk to bleed, or wait until tomorrow...which would mean admitting him overnight and doing the scopes tomorrow. I didn't want to wait. He'd already been without food and being in the hospital RUINS him! So we decided, along with the doc, to go ahead.

He had fallen asleep on me at this time, it was 2:45. So I took him straight into the procedure room and was able to be with him until he was asleep. He was given gas through a breathing mask so he would be out before they put in his IV. We were told it would be about 1 1/2 hours and were given a pager. We went to the cafeteria for lunch and within an hour we were being paged over the overhead speakers. We went to the APC where his procedure was done and told them we were being paged. He had already come out and we were met by a doctor whom we'd never met. He told us that Dr. Weymann wanted to speak with us to "let us know what the next step was" My heart sank. I thought for sure something was wrong, 1.) because he was only back less than an hour. I thought maybe they found something definitive and stopped because of that 2.) they were paging our doc to come talk to us.

The doc came in and said his upper scope went well. The tissue in his esophagus looked good and that his stomach was a little red which can be nothing, but can also mean inflamation. The lower scope was a little more difficult. She said she was able to go in 70 cm and then the scope wouldn't go any further. I thought this meant blockage. So he was sent to Radiology and given an enema barium test. Basically they inserted a tube into his bottom and shot barium fluid into his rectum to watch how the fluid passed through his body. Thank God, this went well. It was TERRIBLE to watch him lay there helpless. He'd just come out of anestetic and now he was being forced to lay in different positions with a tube up his heiny. Poor little guy.

After speaking with the doc, we decided to stay in St Louis one more night. It was already 5:30 pm and we figured it was in his best interest to stick around. They want us to call in the morning to check on him before we leave for home.

He's sleeping and doing well. He wasn't as excited to eat as I expected. He ate a little bit of mashed potatoes and chicken, and a little banana babyfood. He's basically wanted to drink his apple juice. I'm trying to wean him from breastfeeding and right now he's doing well. I hope tomorrow is as successful as today :)

I can't wait to get home and give Makena a big squeeze. I miss her so much while I'm gone. We Skyped the other night and it was really good to see her. She loves her Nana and Papa, but I know she misses us too. She doesn't quite understand why we are all in St. Louis at the hospital and she's not here. She thinks the hospital and St. Louis are fun, thankfully it's a happy place for her :) but sad that she wants to be here and can't. I know it will change as she gets older, I just hope we're not here very often!

Thanks again for praying for us!!!

No bowel obstruction...

2010-02-10T18:29:00.000-08:00

Well, I updated last on my iPhone and for whatever reason, I couldn't write anything other than in the Title. So that is why it only had a brief note.

I took Malakai to our pediatrician office on Monday morning and he was concerned because Malakai's belly was enlarged (I took him in because of this and he has been throwing up on and off for about a month now) We were sent over to the hospital for an X-ray. The radiologist called the pedi and said he thought there was an obstruction. We were told to head to Riley because Malakai needed to see a surgeon that day. I called to his transplant team in St. Louis and they were (as always) on the ball and we were able to avoid going to Riley.

We came in on Monday night and stayed in a hotel. He had an obstructive series and bloodwork done first thing. During the ob. series, he had to drink a terrible barium solution and they watched it going through. He had x-rays done every 30 minutes to show where it was going. This came back positive, as in NO OBSTRUCTION! Thank God. The radiologist back at home was not used to seeing a pediatric liver transplant patient. That being said, Malakai's anatomy is different than other children. All of his intestine are kind of squished in and that is why the radiologist thought there was a blockage.

The bloodwork, however, turned out his hemoglobin level was very, very low. We've known he is anemic for awhile now and he's on an iron supplement. It just hasn't been enough so he was given a blood transfusion while we were there. It was crazy how pale he was, and I didn't really notice HOW pale he was until about an hour into the blood transfusion, his cheeks started turning pink. I mean, he looked like he had been outside on a summer day playing in the heat! They were that pink! He has felt so much better since getting that boost. The nurse said he was getting "a pep in his step and pink in his cheeks" and boy was she right!

We are currently still in St. Louis. He will be getting an upper and lower scope done tomorrow to check for the source of his vomitting and hopefully getting some awnsers. Because of the tests, he hasn't been able to eat anything solid today...only apple juice, Sprite, chicken broth and jello. He's done GREAT! I couldn't have asked any more from him! He hasn't napped, it's 8:45pm and he's still going. That extra blood really helped him out yesterday!! So if you're looking for a reason to donate blood, let that be it!

Let's hope tonight goes well. He's used to nursing himself to sleep and if he wakes up, he usually nurses back to sleep. So tonight should be interesting so say the least! I'm thinking we may be weaning him all together, it seems to be interfering with his appetite and this may be a good time, seeing as though he's going to have to go a full 2 days without it. Wish me luck, I'm gonna need it!

We won't know any more from the scopes for about a week. They're going to take samples from his colon, esophagous (totally didn't spell that right) and other organs. They'll test him for infections, look for ulcers, etc. I hope they can find a reason to his vomitting and he'll be able to move on from here. I am sick of him being sick. He deserves to feel good!

Once I get home, I'm going to try to put some new pictures. I realize it's been awhile and I have taken about 500 pictures since the last time I put any on here. Just know that he looks amazing and is getting SO big!

Thanks for praying for us and thinking of Malakai. He's a true miracle and I am blessed beyond measure!

Headed to St Louis. Tummy X Ray showed a possible bowel blockage. Pray this is minor!

2010-02-08T12:58:00.000-08:00

Yet another hospital stay...

2010-01-28T10:00:00.001-08:00

I wish I updated my blog more often. Our internet at home is so slow and it takes forever to get enough time to get on and write.

Since my last update, I got in a car accident (no injuries, thank the Lord) and I turned 25! That feels old! Josh and I went out to a nice dinner and movie, alone with no kids (Thanks Nana and Papa). We really should do that more often. It was nice to have adult conversation and not having to feed someone else before I ate! With the accident, I was hit from behind which pushed me into the truck in front of me. My truck is in the process of trying to figure out if we want to have it fixed or just to get a different one.

More importantly, Malakai's belly started increasing in size and his bloodwork showed he was anemic and his albumin levels were low. His transplant team requested we come to St Louis one week earlier for clinic, as we were supposed to go out there the last week of January. We were told to expect to stay a few days and that's exactly what we did. He had a narrowing in his hepatic vein which restricted the bloodflow. He developed ascites because of this. We were admited on Wednesday. Two more nights in the hospital to add to our list of admissions. He had a procedure on Friday where they went in through his jugular vein and basically ballooned out his vein. I feared he would be a mess if I had to hand him off to a nurse so I asked if they could give him something to relax him. It helped alot, but then they let me take him straight to the OR table. I was able to stroke his hair and hold his little hand until he was completely out. He cried a little bit because it made him feel so funny, but only about 5 seconds of crying and he was out. It was definatly scary watching him just leave the room, in a sense. I was glad I was able to be there with him, he wasn't scared because I was there. It took him a little while to wake up but once he was awake, he wanted to nurse right away. He took a pretty good nap and we were able to go home that night. I'm hoping this is our last hospital stay on 2010! I know it's only January, but I have to be positive, right?!?!

Malakai is doing amazingly well! He's crawling all over the place and starting to walk with our help. He climbed the stairs at our house all by himself (with daddy close behind) which was quite the task. We have alot of stairs! He loves bubbles and still LOVES to play with any kind of ball. He calls them "ball-ball" trying to say basketball. He is also a little love-bug. He wants to give kisses to anyone wanting one :) He'll pucker out his little lips and expect you to walk across the room to give him a kiss. Then he'll keep kissing you until he's tired :) It's absolutely heartwarming. His favorite 4 words, which he uses correctly, are Ball, DaDa, PaPa and Momma (newly using it as of yesterday....before he would only say Momma when he was crying in his crib) He can use the sign language signs for Nurse (milk), Please, more and recently all done. It's so sweet to see him expressing himself.

Malakai has a new liver buddy, London. She recieved her "Gift of Life" just a few weeks ago and is doing amazing! Check out her blog www.LiverforLuLu.blogspot.com Her momma does an awesome job on updating her site :)

Busy month, lots to update

2010-01-06T08:55:00.000-08:00

The last four weeks have flown by! So much has happened since my last post. I'm sure I won't remember everything, but here I go...

We had Makena's third birthday party at the house. I stayed up late the night before putting up decorations so when she woke up in the morning the house looked ready for a party! She was so excited. She said "Mommy, this is the best birthday EVER!" No cake or presents needed, just a few balloons and streamers and I had already made her day. She got lots of cool presents and had a great day! She was dressed in her princess dress, complete with matching tiara. Her cake was a big castle and before she blew out her candles she closed her eyes really tight and said "I wish for a castle" then blew out the candle. All in all it was a great day and we were surronded by wonderful family and friends!

Then Christmas was right around the corner. We were so busy the few days before. Makena had her Christmas program at preschool. She was the kid running infront of the line, yelling to us in the audience, twirling and dancing when she wasnt supposed to. But it made us all very proud! It was so cute!! Rita, Sarah and the kids came over to make cookies. They had a blast and it's a tradition I really hope we keep. Christmas Eve we went to my aunts house and then to Josh's parents house. Christmas morning we woke up and opened presents. Makena got her Loving Family dollhouse. We waited until the last present to give it to her. She was waiting so patiently (which is very hard for her) and then she tore it open and the expression on her face was priceless!

Josh and I left for a Caribbean cruise on the 28th and were gone 6 days. It was so nice to get out of the Indiana cold and into very warm weather. We basically soaked in the sun during the day, and at night we went to the nice dinners and shows they had. Josh was a frequent in the casino :) He would've lived there if I would've let him! It was nice to have some adult time and it was wonderful to have some alone time with Josh. The kids stayed with Perry and Cindy (Josh's parents) and Makena spent one night with each of my sisters. They were both thrilled to see us. Malakai wouldn't let me out of his sight for the first two days were home. It was hard leaving right after Christmas because I came home and had alot of work to do (still have alot to do) like take down the tree...

Malakai is doing well. We're looking into starting physical therapy with him. First Steps is a service he's currently working with, but they only have an occupational therapist available. I might be contacting Riley to see if they can get him in. I'm not super concerned with him, but I know he should be doing more than he is. He's 15 months old and I feel like he's no where near walking. He's pulling up on things, but not moving at all once he's up. Other than that, he's thriving and growing everyday. He's getting to be a little stinker, just like his sister :)

I wrote a letter to his donors family last night. I haven't printed it yet, and I need to get some pictures printed of him to send with it. I feel like I need to let the letter sit for a few days and then make some changes if necessary. I hope they know how much I love them and appriciate their decision to donate their childs liver to Malakai. I hope they write back, but understand if they don't. We shall see...

Well, hopefully the next time I write it won't be a month in between...I have a little boy who is begging me to lay him down for a nap :)

Christmas is coming...

2009-12-09T13:09:00.001-08:00

I took Malakai and Makena to get their pictures taken with their cousins. Six kids 3 years old and under, I think we got a pretty good picture. I didn't order any of my kids because I had a photographer come out and take their pictures. I don't have them back yet. Mandy (Josh's sister) took some as well so I didn't need to buy any. But here they are...

It seems like you prepare for Christmas, and BAM it comes and goes! I can't believe it's already December the 9th! We had our first snow a few days ago and Makena was so excited! I told her in June at Emma's birthday that when it snowed it would be her birthday. Nothing more was said and when she woke up she looked outside and said "IT'S MY BIRTHDAY!" I couldn't believe she remembered! I told her it wasn't today, but soon. She's getting really excited.

She's started preschool and so far, so good. She calls her teacher, Ms. Brittany, Ms. Murry. No clue where she got Ms. Murry from. Brittany said she's corrected her, but she continues to call her Ms. Murry so she just quit correcting her. She loves carrying her lunchbox in and I think she's well liked by her peers and teachers. She's a pretty outgoing kid, I can't imagine why she wouldn't be likeable.

Malakai had his first appointment with First Steps yesterday and he started crawling. Right then, on the spot. The therapist came in, and he started crawling on his hands and knees. Up until then, he was still army crawling. His favorite word and toy right now is "ball" He says it all the time. It's like he has a one track mind. He's constantly thinking about where his ball is. He's also started to "make a basket" with a small basketball and a plastic tub. He's getting pretty good at it. The basket is small and I'm surprised he's even able to do it. He's saying "MMMM" when you ask what a cow says. He's able to point to a few objects in a book. Sarah showed him a picture of him with his cousins and said "Where's Kena?" and he pointed right to her. He's just grown up so much in the last few weeks, it's incredible.

I just booked a cruise for Josh and I. It's a Caribbean cruise going to Grand Turk, Half Moon Cay, and Nassau. We will be leaving the kids with family and will be gone 6 days. I am very excited, but at the same time hestitant to leave him. I'm not really worried about Makena, she's been away from us enough that I feel like she'll be perfectly fine. Malakai has never been away from me more than about 8 hours. So I am going to be nervous, but I also know he'll be fine :)

So much to be thankful for...

2009-11-29T15:25:00.000-08:00

Im a little late for Thanksgiving, but I thought I'd say how much I am thankful for this year. It's incredible how much has happened in 2009, but I am so glad that everything worked out the way that it has. I think I have become a better mother than I ever would have dreamed. I am so thankful for my husband and kids. I feel so blessed. I'm thankful to our donor family. I think about them just about daily and the gift they gave my family. I'm thankful to have the family and friends that I do.

Malakai is just growing up before my eyes. It's amazing to watch his mind grow. He's starting to say words. He started saying "baby" then "Papa" now he's saying "ball" I was looking at a book with Makena and Malakai last night and there was a picture of kids playing basketball. I asked him "Malakai, where is the ball??" And he pointed to it with his pointer finger. He just seems like he shouldn't be able to do this yet! I know he is 14 months old, but I just feel like he's so much younger! I couldn't be any more proud of him. With all that he's been through, you'd never know it. People are amazed at how sweet his personality is. People who don't even know him can tell that he's a very laid back, sweet kid. I just love him!

Makena starts "school" tomorrow. Josh and I have made the decision to enroll her into part-time daycare. We think she needs the social aspect of being with other kids. I am going to start working for the company some, and so we decided to enroll her into a preschool/daycare. We'll have the option of taking her everyday, but probably will only take her 3-4 days, part time. Malakai will be going to the office with me, so we'll see how that goes. The first few days have been ok, hopefully they continue that way.

I am going to attempt to get my Christmas tree up tonight. We'll see how that goes, it's already almost 7 and I still have to get both kids put to bed. So hopefully, hopefully I can get that done! I got almost all of my shopping done on Black Friday. Rita and I met at 4:45 am and shopped until about 3:30. We had a blast and I was so thankful to get alot of it done! Now to get the tree up, wrap presents and plan Makena's birthday :) I can't believe my baby girl is almost 3!

Few Trick or Treat pictures

2009-11-18T18:55:00.000-08:00

Here are a few pictures from Halloween. Kena was a "kitty princess" and Kai-Kai was a cowboy. She looooved going trick-or-treating. She'd walk right up to the door, knock, step back and wait. She wasn't shy about digging into the bowl to get some candy and skip back to us. Daddy kept Malakai nice and warm in a blanket and then we had a great meal at Nana & Papa's house, complete with more candy!

My two cuties all dressed up

She could hardly wait to go!!

Up fresh from a nap and looking handsome as usual

We decided to take the kids to the zoo the day before Halloween and were surprised to arrive and see they were doing trick-or-treating. She no longer cared about seeing any animals, it was all about the candy! HAHA...Here's a cute picture I got of the two of them together

A beautiful tree at Sarah's house that I wanted to get our picture taken in front of but by the time I made it there, the rain had taken most of the leaves....so I had to kneel for the picture, but turned out OK, I guess :0

Gonna try this one more time...

2009-11-18T18:39:00.000-08:00

I have literally tried to update my blog at least 4 times and for whatever reason (not sure if it's Blogger or my computer) they never seem to post! I don't even realize it until I go to make another blog and see that my older post never showed up. Very frustrating...

Anyways, I haven't updated in what seems like forever. Malakai is growing and changing every day. He's cutting jaw teeth right now, bless his little heart. We didn't even see them until tonight and he was brushing his teeth and started to cry. I looked in his mouth while he was screaming and see THREE new teeth. Poor baby :( Two jaw teeth and one next to the teeth that are already there.

Let's see, what else is new. First Steps came out yesterday and he has qualified for both developmental and physical therapy. I really don't think they'll have to come out much at all. He just needs some muscle stregthening and he'll be good to go :) He's learned how to get onto his hands and knees and push himself from that position to sitting. Next will be learning how to pull himself up and then start coasting along furniture. I'm not at all worried about him. He's had alot of hospital time and I know he will catch up! He loves to throw a ball and lately he's been "cleaning up" It cracks me up! I'll give him a basket and about 6 balls and he will proceed to pick each one up and put it in the basket. He's also been saying "Don't" and "Stop" As well as throwing up his arms when you say "Touchdown" and he can "show you his muscles" It's so cute to watch him grow into a little guy and away from his baby tendencies. I think we're going to be getting a hair cut soon. His length is getting a little out of control, but I really don't want to see his soft baby hair go yet. So we'll wait a little longer :)

Makena, Malakai and I all got our H1N1 shots today. It gives me a little peace knowing we have the vaccine, but also I worry about the lack of time in studying it all. It's so hard, but I'm at peace with the decision! Both of the kiddos were troopers. She got real nervous when we went into the room, but as soon as it was over the lady gave her a sucker and she was fine. Malakai was the same. He cried, saw the sucker and was happy again :) I have such brave kids!

Malakai had a few liver friends, Eden and Eli, recieve their "Gift of Life" on November 10. They're both doing well and I am so glad to see they no long have Biliary atresia and are on the road to being normal, healthy kiddos :) Keep it up, little ones! I can't wait to see pictures of chunky, healthy babies!!

Malakai's Donor Angel

2009-10-29T17:30:00.000-07:00

I found out a few days ago that Malakai's donor angel was a 10 year old girl who was killed in a car accident. I have had questions for almost 6 months about if his angel was a boy or a girl and how she died. Not that it makes it any easier to lose a child, but I'd wondered how she passed. Now that I know, it opens up a ton more questions. I feel like, for the first time, I mourned for her family. I was deeply saddened to find out. His donor was a real child, with a real family. They made the decision, in their darkest hours, to donate her organs. And they saved Malakai's life. I will never be able to fully explain to them how much I love them for their decision. I hope they choose to write me back, but I totally understand if they choose not to. I just need to get the courage and words to write to them. I just don't know how I am going to express the gratitude that I feel in my heart. It will be hard, but I definatly have to do it. I want them to know that without their generousity, Malakai may not have survived. If you're not an organ donor, please think about it. No one wants to think about dying, but think about the potential lives you could save, should something happen. There are far more people waiting for organs, than there are organs available. Just something to think about.

St. Louis visit went well...

2009-10-23T13:56:00.000-07:00

Well, everything is fine! Malakai is FINALLY on the height growth curve. He's only in the 10th percentile, but he is on the curve! He's not, however, on the curve for weight. Our little guy wasn't even 17 pounds yet. But, he has had diarrhea for over a month now. They think his GI tract is just having a hard time getting over this illness. There's not a medication they can give him to make him stop, so we have to wait. They took another stool sample to finish the testing they started. He got the first of his seasonal flu shot and we'll have to get the second one in a month. Trying to find information on the H1N1 vaccine is ridiculous!! He should be on the top of "the list" but no one seems to know who to contact about "the list" In the past, I wouldn't have even probably thought about the vaccine, but with Malakai I feel like it's not even an option! So much to think about now! Anyways, we won't have to go back to clinic until January, which is great news!!

We are hoping and praying that we have a peaceful couple of months. We'd really, really like to go on a family vacation somewhere warm. It'd be nice to get away and relax!!! We had a complete stranger approach us at Cracker Barrell the other day and say "You two need to get away, just the two of you. Go somewhere...you need it, I can tell" I said "If you only knew..."

Anyway, all is well here. I am so thankful things seem to finally be settling down and returning to normal. Makena is growing into a little lady and Malakai is really starting to babble and scoot around the floor. It's an amazing thing to watch children grow...

Malakai is still fighting this bug!

2009-10-16T19:29:00.000-07:00

It has been 4 weeks now, and Malakai is still fighting whatever it is that he originally got the day of his birthday party. He's had loose stools and very little appetite for almost a month now! I sent in another stool culture today to re-check for certain viruses. I hope and pray that he gets over all of this soon. He's only up about one pound since July. He got up over 17 pounds a few days ago, but his appetite has once again decreased, and his weight is back to 16 lbs 10 oz. He is starting to army crawl and get where he wants to go. It's so cute to watch him get his eye on something and go after it! He's also starting to stand and hold onto toys. He can stand a good 5 minutes before getting tired. He's not taking steps yet, even while holding on to your fingers. I know he'll catch up. It's kind of hard because Makena was ahead of kiddos her age. She was walking all over the place at 10 months. So it's hard not to compare, even knowing what he's been through.

I was very sick a couple weeks ago. I don't know that I have ever been that sick. Makena got it the same night I did. We're both better, but Malakai doesn't seem to be over it completely. And tonight, Josh is sick. I can't believe how widespread all this sickness is. I feel like we need to shell Malakai in and not let him out in public. I've become a sanitizer freak and wipe down everything he comes into contact with while we are outside the house.

Malakai has a liver friend, Eden, who is going to recieve a part of her momma's liver on the 26th of this month. Eden turned one in May and I think of her daily. I hope and pray she recovers quickly. I can't wait for her parents to be on the other side of transplant. Watching your childs health worsen is one of the hardest things to do as a parent. I'm so glad Erica (her mom) was a match and they can go on with the surgery.

I tried to upload pictures to my blog but for whatever reason, it wouldn't let me...so here are some pictures from my Facebook page...

http://www.facebook.com/album.php?aid=163903&id=508339417&l=cbdf02865c

Here are the pictures from his birthday party:

http://www.facebook.com/album.php?aid=157141&id=508339417&l=8e32a29679

Back in the hospital...

2009-09-28T17:54:00.000-07:00

So I wrote out Malakai's first year the other night and it vanished, so I am going to attempt to re-write it tonight. I am sitting at Riley, once again, with a sick baby...well, he was sick. He's better and we're hoping to go home tomorrow. I will go into more detail with that later. This is a post more for the future to remind me of how I am feeling. It's a little on the rambling side and sometimes it seems as though I'm not really going anywhere...but bear with me. It's late and I've been in the hospital for 4 days :)

I found myself, on his birthday, really thinking the past year. The day he was born, I fell in love with a little baby boy instantly. I didn't feel that way with Makena. I think with your first, it's all so new and you have no idea what to expect. With Malakai, he was born and I just adored him. He was beautiful, perfect and seemingly healthy. Fast forward 3 1/2 weeks and I noticed the yellowing of his eyes and skin. I didn't know that jaundice developing after birth wasn't normal. I called his pedi office and they told me to bring him in that night for blood work and scheduled an appointment for first thing in the morning. His billirubin levels were elevated and so they sent us back to the hospital for a more detailed blood test. That showed "hyperbilirubinemia" and we were sent to Riley.

We were there bright and early with many tests scheduled, one right after another. I don't remember much about the specifics of the tests, but I do remember the first test, they had him basically taped to a table while this machine looked inside to check his bile flow. I remember thinking, "Is this really that serious?" My baby was strapped to a table, unable to move, and I felt helpless. The first time I would feel this way, but certainly not the last. They tested him for things like cystic fibrosis with ultrasounds, etc. The doctor told us they suspected (after all his tests) that he may have Biliary Atresia. This was the first time we heard those two words that have forever changed our lives. He said this was the "worst case scenario" and we had to rule this out first. Biliary Atresia is when a baby is born, the bile ducts between the liver and intestine are either not fully formed, or not there at all. He went in at the end of October for a liver biopsy and this showed the doctors that he needed to have another operation. The only way to 100% determine if he had BA was to go into the operating room, open him up, and check.

November 6th was the day of his surgery, called the Kasai. He indeed had BA and so they connected his liver to his intestine to create the bile ducts that were missing. They also removed his gall bladder, which was very small and under developed. He was in the hospital for only 5 days and we took him home to recover.

Slowly, the yellow started to fade and he looked like a normal, healthy baby. We hoped and prayed that his Kasai would work and he wouldn't need a liver transplant. Something like 85% of patients with BA who have the Kasai will need a liver transplant before the age 20. 50% of those will need a transplant by the age of 2. So we knew this was a possibility, but prayed for the best.

He went back for labs every few weeks and really looked like he was doing well. His bilirubin level was dropping (slowly, but dropping) and he was thriving. In January, his belly started to swell a little. After a trip to the ER and a few nights in the hospital, we were sent home on a diuretic, in hopes to pull the fluid from his belly and he would pee it out. It seemed to be working at first, but over time his belly was getting bigger.

In February, we took him back to the ER. His belly was increasingly getting bigger and he'd stopped eating well. When we got in, his labs showed his sodium was dangerously low. The doctor told us that most kids with a sodium of 112 would be having seizures. Thankfully, he wasn't in that bad of condition. It did, however, send him to the ICU. He was watched there for 3 days and sent to the regular floor. Trying to get his sodium in line created another problem, his swelling belly. His belly got so huge, I wasn't able to hold him and he looked 9 months pregnant. At this point he wasn't eating anything by mouth, it was all going in his feeding tube. After about 3 weeks at Riley, we had made the decision, after meeting with the entire GI team, that it was time to have Malakai evaluated for transplant. We'd initially decided to go to Cincinnati Children's Hospital. They couldn't get us in for another 10 days, but St. Louis could get us in the next day. So we decided to go there, and I'm telling you what, that may have been the best decision we made! We have loved being there!

Anyway, he was flown out to St. Louis on St. Patricks Day and after 8 days, his belly was much smaller and we were discharged. He was officially listed for liver transplant on March 21st and sent home on a feeding tube. He was very skinny, but the doctors were telling us he needed a transplant and probably didn't have much time to "fatten" up before. Over the next month, he declined quite a bit. He was very thin and didn't have much energy. The whole time though, he was very happy.

Malakai recieved his first call for a new liver on April 24th. Josh's mom, Cindy, was undergoing tests to see if she could be his living donor at the time. We didn't have the results back yet, and without knowing if she could be a back up, we made the VERY difficult decision to turn down the first liver. After losing my dad after a double lung transplant, I felt like I NEEDED a back up. May 1st, he received his 2nd call. We were told it was a 17 year old donor and we packed up our car and headed to STL. We got there, all set up, and had a tentative surgery time of 8:30 pm. At 8:30 the surgeon came in and said the liver wasn't splitable and wouldn't fit Malakai's tiny body. So we left the hospital, stayed in a hotel, and went home the next day. He had an appointment May 6th, so we planned to come back. We also found out that Cindy was NOT a match.

May 6th, his albumin level was low and they told us we needed to stay in the area the next three days for IV albumin. Josh went and got us an apartment and we decided we were going to stay in the area until transplant time. Having drivin out the first time and it not working out, really rattled us. They told us "He needs a transplant, and he needs one soon" I could hear the desperation in her voice. We were basically told he only had weeks to live on his old liver. We had MANY people that we didn't even know, call and offer to get tested to see if they were a match. I was humbled to see that many people step up to save my sons life. I didn't even know some of their names, but I am forever grateful for their generousity. Then, Sarah, my twin, called me that day and told me our blood type was O+, which was Malakai's. I couldn't believe I never got my blood tested to see if I matched him. So I called and started getting my tests scheduled. After multiple tests over the next 2 days, we were scheduled for transplant on May 18th. I couldn't even begin to truly think about what was going to happen. What if I didn't make it? What if he didn't make it out of the surgery? What will Josh do without me? I knew I couldn't think about these things because if I did, I would not be able to make it the next few weeks. I would do whatever was necessary to save Malakai's life.

It turned out I would never need to make that decision. We got "The Call" on May 10th. We were told the donor was 10 years old and the new liver would be cut down to fit his body size. The surgery lasted about 6 hours and I was so relieved when the surgeon walked out and said it was over! I knew the next few weeks would be difficult, but my baby was ALIVE! The surgeon said Malakai was the skinniest baby he'd ever transplanted. He was skin and bones. It brings tears to my eyes to really think about how thin he'd gotten. We were inpatient for about 3 weeks and stayed in St. Louis another 2 after he was released from the hospital. It was nice being in STL as a family and not in the hospital. We went to the park almost every day and just enjoyed having our little baby boy back.

We were so grateful to the entire staff at St. Louis Children's Hospital. We felt as though Malakai was truly cared for there. They wanted to do their best for him and see him thrive. I can call and know that they know who I am. He is not just another patient, he's a child. I know they love him...and that makes all the difference in the world!!

Since the transplant, Malakai has done well. He's had a few bumps, one major. A bowel obstruction that led to a major surgery. All in all though, I can't complain. He is alive, he is thriving, and best of all, he has a healthy liver. One year ago, I would've never imagined that I would have had the strength to endure the year that I have had. I do know, there's nothing I can't handle. God has given Josh and I both the strength and endurance to take whatever came our way.

I am the mother to two of the most beautiful children in the world. Everytime I look at Malakai, and he smiles, it is all worth it. I would do anything for him to be healthy. I pray that his life is full of normal kid stuff. When Makena says "Mommy, will you play with me?" or "It's a sunny day!!!" when she wakes up in the morning, I am reminded at how blessed my life has become. My wish is for both of my kids to be happy, successful, compassionate, faithful, God-loving individuals.

Malakai got a little bug sometime before his party and he became severly dehydrated throughout the week. We ended up in the ER on Friday and it's now Monday. We thought we were going to the ER for IV fluids and here we sit waiting to be discharged. I guess I am just reminded that he is immunosuppressed and he will require a little more medical attention when he gets a sick. I think it has also taught me to be a little more cautious about washing both mine and Makena's hands often, to wash tables and high chairs down at restaurants and not to put him in a shopping cart. I also need to keep Makena as healthy as can be, so she won't give him anything.

I realized the other day, he's had at least 8 hospitalizations. He's been in the hospital every month since he was born except for December, April and July. He has stayed roughly 80 nights (I have definatly lost count) in the hospital. And still, he is all smiles. What an inspiration and role model he has become to me and many others!

My little baby, who is quickly turning into a little boy, is growing up entirely too fast. I was watching him play yesterday and he is starting to move cars as though they are driving. He's also learned to throw a ball. He's learned to "fake" a laugh and also a cry. I am just beyond delighted to see him growing up and learning new things. He's taught me so much in the year he's been here and I am blessed and honored to be his mommy.

Happy Birthday, Malakai!

2009-09-24T19:30:00.000-07:00

I literally just spent the last hour writing out the thoughts and fears and events of Malakai's first year and how I felt about all we have been through, and it erased. Just like that, its gone! I am honestly in tears right now. I will have to do this again tomorrow. I want to remember his first year and I know further out we get, the memories will fade. Ugh!

Today, my baby turned one! I have much more to say about it, but this will have to wait. It's getting late and he's not feeling very well. So I know he may be up early and tomorrow will be a long day. I just have to say how thankful I am that he is here and alive. One year ago today I fell in love all over again, and I think I've done it everyday since then. Malakai is the light of my life and I am so proud to be his mommy. He has been through far more than any child should have to endure and he's done it with a smile on his face.

Happy Birthday, Malakai. You are TRULY A MIRACLE! Thank you, donor family, for giving our little boy the chance to grow up and live a normal life!

Big birthday celebration!

2009-09-20T19:33:00.000-07:00

Malakai's party turned out great! He woke up not feeling really well, and actually threw up. I told him he wasn't allowed to be sick on the day of his party. After a few things went wrong, things finally started to settle down. Josh built a big bonfire to light at the end of the party when it started to get cold and someone threw a cigerette in it and it caught on fire. The smoke combined with the wind blowing super strong made it almost unbearable to be outside! But eventually, the party I had been planning for a month finally started to feel like it was going to have a great turnout. The bouncy house and pony (yes, the pony DID show up) were a hit and everyone had a great time! Malakai's appetite has been almost non-existent the last couple days so he didn't get to smash his birthday cake like at most 1st birthday parties. I was afraid the amount of sugar would make him sick. So we will be doing that on his actual birthday. He loved the pony and actually like riding! He was making horse sounds and bouncing as if to make the horse go! It was too cute! All in all, it was a great party. Worth the time I spent planning it, but I am glad it is over! He got alot of great gifts and it was wonderful to see everyone. Thanks again to all that showed up and celebrated his life with us!

My computer is acting up, I was trying to upload pictures but for whatever reason I can't get them to load. So I will try again tomorrow!

Trying to play catch up...

2009-09-17T19:27:00.000-07:00

I haven't been too great at keeping my blog updated! I have had so much going on these last few weeks, I haven't had time to sit down and write! Malakai's party is quickly approaching, less than 2 days away! I have been working daily to get things done. We decided on a taco bar theme and hopefully we bought enough food...it's so hard to tell how many people to expect! I had a pony rented and we've had a serious mix-up with it. So we may have a pony, we may not. I was NOT happy with the pony-guy. I said "You don't understand how important this party is. I spoke with you a month ago and you said it wasn't a problem, then I get an email 5 days before the party and you don't know if you're going to be able to 'work it in?!" We shall see! We will have a bouncy house and plenty of tacos and cake :) I am really looking forward to seeing people I haven't seen in awhile, and alot of people who haven't had the pleasure of meeting Malakai!

I weighed him this morning, he was 17 pounds 2 ounces. I wrote a few weeks ago and said he learned how to throw toys from the stroller, now he's learned to throw food from his highchair. I will put 5 Cheerios or Goldfish, and he will pick each one up individually and throw them off. It's cute, but messy! He's really starting to jabber. He's trying hard to talk, and saying "sssss" Like sissy...So he's said "dada" and now "sisss" but no Momma...It will come, someday before he's 5 :)

Makena has successfully learned how to ride her tricycle. It's so cute! I think she would've learned a long time ago, but we have no where to let her ride...she's learned how to ride around the hot tub on the deck and there is very little room. If she misses the turn, she's off in the grass, 12 inches down! So I am very proud :)

Josh and I will be celebrating 6 (yes, SIX) years of marriage on Sunday. That makes me feel so old!! We have been through so much together. My dad passed away 9 days after we got married, we had a miscarriage, then an ectopic pregnancy that nearly took my life, then Makena was born with some issues that had us terrified and all that has gone on with Malakai. I do know it has made us stronger as a couple and I am so thankful he chose me as his soulmate. Remembering back 7 years ago when his dad introduced us and I was so embarassed I turned around and left, to now...2 beautiful kids later. All I can say is, I am truly blessed. Happy Anniversary, Josh. I love you!

Ah, poop in the tub!

2009-09-08T18:19:00.000-07:00

After a very messy dinner of spaghetti, I put both kids in the tub. They were both enjoying themselves and playing well...I was going to let them play as long as they liked because they were content. Then I looked in the tub and Malakai had just pooped! I yelled for Josh and we grabbed both kids out...Makena thought it was hilarious!

On a lighter note, Malakai has started to "crawl"!! He's not up on his hands and knees, but he draws his legs up under his body and pushes off. He definatly gets where he wants to go and is starting to get into everything!! The joys of a baby on-the-go! It won't be long before he's crawling out of the room I put him in!

He's doing very well, no issues to report! He's gaining weight and is happy as can be. He's also sleeping through the night!! I couldn't be any more excited about this!

I have been working daily to get his party planned. It's Saturday, September 19th from 3:00 - 8:00pm. It will be an open house style party. We'd love for everyone to stop by and celebrate with us, even if you can only stay a little while. Gifts are not necessary, celebrating his life with us is enough! It will be out at our family farm and will be complete with food, cake, a bouncy house, pony rides and lots of fun! For directions, please email me. Carah117@yahoo.com. If it's raining, it will be at our home...but we're praying for beautiful weather that day! I can't believe he is going to be one! This has been one very long (yet short) year for us...I am just so thankful that Malakai is here, alive, and thriving! What more could a mother ask for on their child's birthday?

Another trip to the ER

2009-09-01T18:05:00.000-07:00

After a day of quite a bit of bleeding, I called up to St. Louis and had the on-call GI doc paged. I told him he'd been bleeding where his Broviac was removed and he started to develope a knot under his skin. He said he would feel better about him being seen. Rita and I took him up to Riley around 5 pm on Saturday. It really got pretty gross and I was glad we took him up there. They drew a blood level and his CBC was slightly elevated but nothing to be concerned about. We went home around 10:30 pm and were told to just watch it. Thankfully, the bleeding stopped and he is doing just fine now. We gave him his first Broviac free bath; he and Makena both loved it! He just splashed and splashed. He looked so different after because his hair got really clean! Sponge baths just don't do the same! So all in all, he's doing great and I couldn't be happier. He's really starting to babble and just seem grown up! Makena is really starting to calm down alot. She seems to be behaving more as well. She's potty-trained and having very few accidents! I am so happy about this! I really hoped that she would be by the time she was 3, and we're just a few months shy! That's about all on this update. I have a ton to do for Malakai's birthday party!!

Last night was terrible, today was GREAT!

2009-08-26T18:55:00.000-07:00

We arrived in St. Louis around 8 pm...Josh took Makena swimming, which she loved! After about 30 minutes we headed up to our room to get settled for the night...that took about an hour and a half and finally around 11:30 pm, I layed down. Malakai wasn't allowed to breastfeed past midnight, water only until 5:30 am, nothing after that. So he woke up at 2:20 am and cried and cried and cried until about 4:30...then I woke up at 6:15 to shower and get ready for the day. So he was exhausted (and so was everyone else!!) He cried the entire time I was getting ready...broke my heart because he didn't understand why he wasn't getting to eat. His appointment was at 9 am, we were told it would be about an hour. At 9:10 the surgeon came in and said he was all done and did great! 10 minutes!!! He took forever to come out of the anesthetic. We've never been allowed in the recovery room before, but he was OUT! We'd pick up his arm or leg and it would just flop on the bed. It took him about 1 1/2 hours to finally wake up. He just completly snapped out of it! He started to cry, I nursed him, and got him up to dress him and he just started to babble and smile! It was great :) He's a little bruised and is still bleeding a bit but otherwise...THE BROVIAC IS GONE!!!!! He's allowed to take a bath on Friday! I've never been so excited to give my baby a bath! He ate like a champ at both lunch and dinner and is now sleeping soundly. Hopefully he sleeps well tonight!

New pictures

2009-08-25T11:19:00.000-07:00

My sisters, mom, and I took the kids to Brown County a few weeks ago for Mom's birthday. It's a big state park in Indiana. We got a cabin and the lodge had a big indoor water park. The kids had a blast. We decided to take their pictures before we did anything, while they were all in good spirits and before they could get dirty :) They turned out GREAT! I don't know why they are so small...all of them are small except for the one of Makena...Anyways, here's an idea of what we were able to get!

Here's the three older kiddos: Emma, Clay and Makena

Beautiful picture of Makena and Malakai

All 6: Emma, Makena, Jack, Malakai, Addison and Clay

Our little miracle, Malakai :)

Our beautiful princess, Makena :)

Broviac removal tomorrow!!!

2009-08-25T10:47:00.000-07:00

First of all, we're heading to St. Louis tonight to have his Broviac removed tomorrow! I am so excited!! One more step in the direction to make him normal! Makena will be so excited to get to take a bath with him. She asks almost every time she gets in the tub if Malakai can get in with her. And hopefully it will make bathtime easier for me, although I realize it could make it more difficult! I can totally see her trying to take him under (being sweet about it though! LOL)

Secondly, Malakai is doing FANTASTIC! He's back to being his normal self and is babbling like crazy. He's really starting to act older and it's so awesome to see! He's starting to push his knees up underneath himself and trying to scoot forward. It's hard to give him much time on the floor because Makena will run all over him if I'm not in the room. So, I think if he was allowed a long amount of time on the floor he'd be crawling alot sooner than he is. He's eating great, and starting to sleep better. Hopefully going into the hospital tomorrow won't mess him up!

I've started to plan his birthday party...It is going to be September 19th (he turns 1 on the 24th!). Everyone is invited. I know alot of people prayed for him and us during his transplant experience and I would like anyone and everyone who prayed for us to be a part of his big day. We're going to have a bouncy house and a miniature pony for the kids. Lots of fun and celebration to be had that day :) Please comment or email me if you think you'll be able to make it. I am going to try and get an estimate of how many people will be there! We sure have alot to celebrate!

We've updated KenaddiesBowtique.blogspot.com. My sisters and I pulled an all-nighter a few nights ago and stayed up until nearly 4:30 am making hairbows, only to be woke up at 7:30 by the kiddos. We made some extremely adorable Christmas and Halloween hairbows. Remember, we can customize bows to match specific outfits. We're also now selling hairbow holders, stay tuned for pictures of them...they're so cute! Please check it out!!

We are home!!

2009-08-13T19:30:00.000-07:00

I will do my best to sum up the events of the last few weeks without writing a book!

After my post about his slight fever I took Malakai to his pediatrician Monday (August 3rd) and after looking in his ears she determined they weren't red enough to warrant a fever and just to be safe sent us to Riley. They ran some blood cultures and swabbed his nose to check for anything viral. Nothing showed up and it looked like we'd go home on Thursday (we had to wait 48 hours for the cultures). Then Wednesday he decided he was going to stop eating anything. He'd stopped eating real food Monday, then stopped breastfeeding on Wednesday mid-day. By Wednesday night, his stools were very loose and a greenish color. Thursday he started to spit-up. It wasn't a large amount, but he's start to gag a little bit, then throw up. So I was concerned about what could be causing this. Then he started to have high blood pressure. He'd never had a problem with this before so they had to figure out what was causing it. They said it was high, even for an adult. It was in the 130's-140's/90's-100's. It's supposed to be under 110/70. So that was concerning and the docs in St. Louis asked for a liver scan. Then early, early Friday morning he started vomitting bright green. And I mean, BRIGHT green. So they ordered X-rays and a full abdominal ultrasound at 9 am. About 10:15, after talking to Penny (his transplant coordinator) she said worst case scenario, he had a blockage in his bowel and would need surgery. Sure enough, after reading the ultrasound and Xray, they decided he would indeed need surgery.

They lifelined Malakai out to St. Louis at about 2:15 pm, only four hours after finding out he'd need surgery. His blood pressure was pretty high at this point and he was acting really lethargic. Not really moving much and not caring when they were messing with him. That scared me pretty bad...knowing he was getting ready to get on a flight and wasn't looking good. I was supposed to fly with him and once again, they got into his room with the stretcher only to find out I couldn't go because I didn't have my driver's license! This happened when he was airlifted to STL the first time. I couldn't go that time because there wasn't room. So I had it in my mind that I was flying with him until the transport team arrived. I guess lesson learned, grab my purse ANYTIME I leave the house. That was the only time I broke down during all of this. I haven't cried in awhile. But them telling me my son needed an emergency surgery and then taking him from me was more than I could handle! I kissed him on the forehead and he was straining his neck to see me as I walked away. I had his stroller in his room and literally pushed past the nurses to leave his room with an empty stroller. I was crying and didn't want to see him being taken away. I am feeling the same emotions all over again!!

So he got to STL and they did their own scans to look at there. He was taken into surgery around 10 pm and it took a few hours to complete. He did very well. They said after his old liver was taken out, his diaphram was left a little thin due to cutting it away from his body and because his new liver was a little too big it had to be put in a different place than his first liver. Over time, his diaphram got a little hole in it. So his intestine was able to move up into the small hole, creating a hernia and therefore creating the obstruction. That's why he'd stopped eating, starting having diarrhea, and eventually throwing up bright green bile. They put a small skin graft over the hole. He stayed two nights in the PICU and was sent to the regular floor on Sunday afternoon.

He had a chest tube in and as soon as they took it out, he was so much more comfortable. The surgeon (Dr. Earl) that came in to remove the tube said that he was the toughest kid he'd ever removed a chest tube from. He didn't even flinch!! He said "I would've been screaming if that were me!" So needless to say, I have one tough little guy :) He also had an NG tube to suction the contents of his stomach out, but he decided to remove that on his own :) He started to breastfeed again and was pooping again so they sent him home!

I was reminded again how much I LOVE the team at St. Louis Children's Hospital. We are so blessed to have found them and I can't say enough wonderful things. Anyone looking for a liver transplant team, I would HIGHLY recommend this facility and team! We trust them all with our son's life, with no questions about why they do what they do. I feel like each and every person on their liver team truly cares about Malakai. I feel like they do their job to save lives and they truly care about their patients on a personal level. And the nursing staff is wonderful as well. Everyone was so excited to see him!(Don't get me wrong, I love the Riley nurses as well! Just not thrilled with the doctor staff...) Dr. Lowell, his transplant surgeon, couldn't get over how great he looked! He just went on and on about how much weight he'd gained and how he didn't even look like the same baby!! He said he wanted a before and after picture because he just looks that GREAT!

Ok, before I make this a book like I promised I wouldn't do...Thanks to everyone who prayed for us. This 10 day hospital stay was the first I did mostly by myself, so that was a challenge but now I know I can do it! He's getting older and realized more than he ever has about what was going on. So please continue to pray for health over Malakai and that he is over this stage and can go on to live a normal, healthy life!

Surgery was a success! (via Rita again)

2009-08-09T10:07:00.000-07:00

Malakai's surgery to remove the obstruction occurred on Friday night. It took around 2 hours. They were able to go back in through the scar from his transplant, and they discovered that the obstruction was from a spot where his original liver was attached to the inside of his abdomen. When they removed his liver, this created a small hole, and his intestines worked themselves into this hole. In essence, the hole squeezed shut his intestine. (I'm sorry if these details aren't 100% accurate, I'm going by what Josh and Carah have told me in our brief conversations). They also discovered a small hernia and fixed that during surgery as well. He went to ICU after the surgery, and has been on a high amount of pain meds. They have begun to reduce what he is taking, and because of this, he's beginning to act a bit more like himself. He will be leaving the ICU today!! Yea!! Carah will be able to use her cell phone in his room once they have left the ICU, so she'll be more able to be in touch with us back home. Continue praying that he recovers quickly!

Obstructed bowel--to St. Louis again.

2009-08-07T14:24:00.000-07:00

After a second rough night of vomiting, Malakai's belly began looking swollen again. Riley decided to do an ultra sound and x-ray, and noticed what they thought was an obstructed bowel from surgery related scar tissue. Once this was confirmed, Josh and Carah decided to have Malakai transferred out to St. Louis to do the surgery necessary to fix this. Malakai was life-lined, and Josh and Carah drove to meet him. The surgery will take place this evening. More to come...

Malakai's update via Rita

2009-08-06T12:57:00.000-07:00

Carah and Malakai were sent up to Riley on Monday due to Malakai running a temperature. Initially it was thought he might have an ear infection, but that was quickly ruled out. After blood and urine tests, nothing of real significance was found, but he was still experiencing some not so wonderful symptoms...ie, vomiting, diarrhea, lack of appetite, etc. The doctors have indicated that they believe he has some sort of a stomach bug, but that it has hit him harder than it would most babies due to his compromised immune system. They are treating the symptoms right now, hoping that he will regain his appetite soon. They are waiting for him to remain fever free, and resume breastfeeding/table foods before he will be discharged. So, like always, we wait...

Had our first post-transplant scare...

2009-08-02T19:39:00.000-07:00

Malakais appetite lately has been down. He's not been really interested in eating and he's been drooling alot. I chalked it up to teething and didn't think much of it. Yesterday he was crabby and wanted to be held as much as I would hold him! We had a showing on the house at 2:30 and so I had to clean and couldn't hold him as much as he wanted. He was cranky, but was managable. I put him to bed early and he woke up around 2:00 am to nurse. When I picked him up I noticed he was really warm. I asked Josh to get the some Tylenol and the thermometer. It was 100.2 F (37.9 C) I called the doc on call and he said if it reached 38 we'd need to take him to the ER but to watch him overnight and as long as he was able to sleep we could wait until morning. Long story short, all day today he's been off and on with a low-grade fever. When he was discharged from the hospital after transplant, we were told to call if his temp reached 38 Celcius (100.4 F). With his Broviac still in, a fever could be a sign of an infection, so they always want to double check to make sure this isn't the cause of his fever. His temp never got that high, thankfully...but it hung out around 37.9 C (100.2 F) alot today. I spoke with the on-call GI doc about four times and he told me to get him into his peditrician tomorrow and as long as he doesn't reach 38 it'll be fine to wait. He's been tugging at his ears and drooling like crazy so Josh and I think maybe it's teething or ear infection. Either way, we don't believe it has anything to do with his liver. We've been giving him Tylenol every 4-6 hours as needed. As soon as it kicks in, you can see a huge change. He'll start to babble and smile. Then a few hours later, he's back to being fussy and irritable. Hopefully by morning he'll feel alot better. He didn't really eat much at all today. Drank about 4-6 ounces of juice and breastfed, but really didn't eat anything solid. Again, hopefully tomorrow will be a better day. Having a simple childhood illness will be totally different with Malakai than with Makena or any other healthy child. I guess we saw a glimpse of that today. I'm sure with time it will get easier, but I kept thinking the worst all day. Say a prayer for Malakai if you read this.

Dada

2009-07-30T12:30:00.000-07:00

He's now saying "Dada" new as of about 10 minutes ago! It is so sweet to hear :) We have been working with him, saying all kinds of noises over and over again trying to get him to repeat us. He said Nana the other day (which is what we call Josh's mom) but it was one time and not again since. Today, in his swing, he was just babbling...Dada, dada, dada, dada...over and over again! Sooo cute :)

We've scheduled his Broviac removal for August 12th...three months to the day from his transplant. I'm ready to get rid of it and give him a normal bath! That means no more weekly labs...but now he'll have to go once a month to actually have blood drawn, something he hasn't had done since beginning of May :( Not looking forward to that, but definatly looking forward to getting rid of the Broviac and not having to flush it daily and worry about him yanking it out or getting an infection because of it.

Makena had her first gymnastics class yesterday with her cousin, Emma. She's still a little young I think to truly get the idea, but she had a good time. I think once she gets used to the structure, it will be alot more fun. They had a long trampoline that I think was her favorite part. Each of the kids got a turn jumping from one end to the other. She was definatly the most outgoing and energetic one there! Here are a few pics of her first class.

Happy 10 Months, Malakai!

2009-07-24T19:08:00.001-07:00

I can't believe he is already 10 months old! It's been a very long, and very exciting 10 months. We have one very handsome, very healthy baby. We couldn't be any happier! To think where he was a few months ago, and where he is now...it's amazing. Every month is a milestone. We will have something GREAT to celebrate on his first birthday.

Speaking of milestones, he started clapping today. All those hours of "patty-cake" have payed off :) and he's very proud of himself. He's also starting to "inch" across the floor. He'll reach as far as he can with one arm, then switch...reaching as far as he can with the other. He doesn't get very far but it's so cute to see him moving! It won't be long and he'll be all over the house!

And I'm proud to say, his menu has finally expanded to include something other than lasagna and spaghetti! I'm starting to get tired of people asking me if "he's still a little jaundiced" His face and hands have an orange tinge to them because the base of the meals he was eating twice a day is carrots! Haha! It was actually starting to turn his skin orange because he was eating it so much! He's now liking sweet potatoes with turkey and peas! Hopefully soon he'll be moving off baby food and starting to eat table foods more.

Having a great summer!

2009-07-21T14:51:00.000-07:00

We are having a blast getting out of the house and enjoying Malakai as a healthy baby! We got some good pictures this weekend at a family reunion. It was freezing for July...we were all dressed in sweatshirts and jeans! Is it seriously July?? A good break from the heat, but glad it's warming up again.

A normal person looking at him may think he's small for his age, but I think he's a chunky little guy! I love watching him grow! Looking back at where he was just 2 months ago, it's amazing how much he's grown! I can't believe he's almost 16 pounds!! Here's a few pictures from this weekend!

Mommy, Makena and Malakai

Makena being Makena...Sassy but sweet!
Aw, shucks!

Look at how chunky he is!

I talked to his transplant coordinator (Penny) and she said they're going to schedule his Broviac removal for the 10-14th of August..I CAN'T WAIT!! I changed the dressing on it today and his skin is so sensitive, it's all red under the tape and looks so irritated. We are going up to Michigan, just the kids and I with my mom, sisters, nieces, and nephews the following week and I'm excited he'll be able to get wet!

We went to the zoo today and I forgot my camera. Thankfully, my sisters brought theirs so hopefully I can get some pictures posted later! Makena rode a horse for the first time. She loved it, wanted to go again as soon as she got off! LOL They have a little water park where water squirts out of the ground...not big at all but the kids all had a blast!

No more steroid!!!

2009-07-16T09:28:00.000-07:00

Penny (his transplant coordinator) called today and said all of his levels were GREAT and he no longer needs his Prednisone!!!! He HATED his prednisone, it went down super hard and was very hard for him to swallow! So that's exciting, plus it is one less medication each day and one step closer to being a "normal baby" He can now go in public places, which is something I took for granted before. Although, I have saved alot of money because I can't just run to the store!! Great news :)

Another good appointment!!

2009-07-15T15:42:00.000-07:00

A few things to update, but nothing bad! He's doing FANTASTIC!! We had First Steps out yesterday to do an evalution to see if he was eligible for physical therapy. After watching him and asking a ton of questions, they determined....He didn't need their services!!!!!! He's doing THAT well! He's only behind because of his hospitalizations, and they said he's technically not behind. He's only not doing things because he hasn't had enough time to. So they're going to come back out and re-evaluate if we want them to in 3 months!

Today we went out to St. Louis for his first check up since leaving. They were all impressed with his progress. His Tacro level on Monday was 9, I'm assuming it isn't much different now, but we haven't heard back yet. He weighed in at a whooping 15 pounds, 11 ounces! He is a chunky, chunky baby! He loves to eat and it shows :) They want to see him again in a month and then they'll take out his Broviac (central line). They've decreased his steroids to a very small dose and it looks like his next appointment, they will get rid of all but three of his meds!! I am so very pleased with him and how well he's doing. I couldn't be any more proud!!!

Super Cute Hairbows!

2009-07-11T19:09:00.000-07:00

Hi friends!! My sister and I have recently started making hairbows for our little girls. After several requests from friends and family, we have decided to start making them and selling them to others. If you have any little girls, or know anyone who might be interested, please feel free to forward our information along. These hairbows are perfect for newborns, as well as toddlers, and even older girls. All of the bows come on non-slip alligator clips that can be attached to one of our crochet headbands (perfect for infants and toddlers), or directly into her hair.

Prices for our current inventory are:
$2.00 for crochet headbands (when purchased with a bow)

$3.50 for large bows and flowers (or 3 for $10)

$2.00 for small bows (or 3 for $5)

We can arrange local pickup, or will ship for an additional $2.50.

Here is a link, these are only samples; hairbows can be made in any color combination/size you would like. If there is something specific you are looking for, feel free to ask. We can probably come up with something to meet your needs.

Check out our blog at Kenaddiesbowtique.blogspot.com!

Carah (and my sis Rita)

Happy Birthday, Josh!

2009-07-10T14:49:00.000-07:00

It's Josh's 30th Birthday! Happy Birthday!!! I took Makena to the store with me and let her pick out Daddy's cake. What does she pick? Cupcakes with Princess rings on top. I let her get them and she was so excited to show him. He was equally excited, I think :)

Malakai had his lab draw yesterday, everything looks good except his GGT was alittle high. They're waiting until they get his Tacro level to make any sort of changes. I went to flush his Broviac (central line) this morning and it wouldn't. It kind of had me scared but thankfully after his home health nurse came out she was able to get it to go through. We would've ended up at Riley's ER tonight..not a fun place to be on a Friday night! Praise the Lord!!

Makena has become such a cute little kid! She's also become quite the little dancer. It's so sweet to watch her. She's been watching So You Think You Can Dance with me a little before bed and she tries to do what they're doing. The other night it was on, and she insisted on getting her ballerina dress on and stood in front of the TV trying to do what the girls were. Then she said "I have to go get Daddy!" because she needed a partner. So sweet!!!

I taught her a tough life lesson yesterday. We were driving home from Walmart with the windows down. I've told her multiple times not to throw anything out her window...well she threw her little toy purse out the window and screamed "MY PURSE!!!!" and immediately started to cry. My sister was driving behind me and said "Oh, no..she threw her purse out the window!" So I told Makena that was why we didn't throw anything out the window and now it was going to be gone forever. Her response? "It's ok, Mommy...we'll just buy a new one!" Priceless!

More pics...

2009-07-08T10:23:00.000-07:00

He just keeps looking better and better! I would've never thought less than 2 months post-transplant he would look this amazing! What a miracle he is!

I really need to do a better job blogging! The summer is flying by and I am enjoying it being so nice out! Malakai is doing terrific. He's really growing and getting stronger by the day. He's sitting up well and just the other day starting taking small steps when he was holding onto my hands. I really had to help him out but he was getting the idea. And he's napping very well during the day, something we've been working on since his transplant. He's also sleeping alot better during the night. I'm only getting up 1-2 times, compared to 4-6 right after.

Josh's birthday is Friday, and we're planning a cookout/bonfire on Saturday night. That should be fun and nice to see some friends! Let's just say, this is a birthday he's not looking forward to and it ends in a 0 (wink, wink!)

I've been thinking about what I'm thankful for lately, and to be honest, I have more to be thankful now than I ever have in my life! I have two beautiful, healthy, children whom I love more than the world! I have a terrific husband, who's also my best friend...we've been through a lot together, more than alot of couples ever have to go through. He supports me and encourages me when things are tough. I have wonderful sisters... I honestly don't think I could ask for better :) I have a great mom who's had to endure alot in the last 6 years. She's stronger than she thinks she is and I admire her. My in-laws are terrific! They love my kids and my kids love them! They have a relationship I hope continues the way that it is going now :) I have great friends and family. I am truly thankful for everyone who loves me and my family! I'm thankful to live in a time and place where Malakai's life was able to be saved and organ donation is possible. I will forever be thankful to our donor angel and their family. I'm thankful we found Children's Hospital in St. Louis. We were blessed to have such an awesome team of doctors, nurses, and a terrific transplant coordinator.

Nothing really new to report, I guess that's a good thing! Things have calmed down and I'm enjoying trying to get back to "normal!"

New pics

2009-06-29T09:21:00.000-07:00

Malakai and his new cousins, Jack and Addison, keeping cool under a shade tent at the fireworksMy two beautiful children...He absolutly adores his sister!

My all time favorite picture of them together

She had a blast dancing to the musicLook at those chubby cheeks :)

Fun filled weekend!

2009-06-29T09:01:00.000-07:00

We had such a fun weekend! We spent some time at Aunt Rita's house on Thursday and Friday. Makena loves spending time with her cousins, and I love spending time with my sisters, so it all works out. Then Saturday we had a showing on our house (Praying it sells soon!!) and went to the Greenwood fireworks. It's a tradition in our family, something we've gone to every year since I was little! It was so hot out, we had a small tent for the babies and brought plenty of cold drinks! We saw a few people we knew, and everyone was amazed at how great Malakai looked :) I agree, he looks amazing! You'd never guess that he had a liver transplant less than 2 months ago! Both kids did great during the fireworks. He was very sleepy so he was wanting to be rocked, and Makena was amazed by them...it didn't last long though, she fell asleep during them! HAHA! She pulled the shade of the stroller over her and was out! Yesterday was Emma's 3rd birthday party. I got her a goldfish...anyone looking for a great gift for a birthday? A goldfish was a great idea! She loved it and so did all the other kids!

The local newspaper had an article in it the other day about Malakai. It was so weird reading about our story from a third party perspective. I felt emotional reading it...it pulled on my heart strings, and it was about my family! I am just so relieved he is doing so well and that we are home. All of this is behind us and we can move on and be a normal family!

Malakai's blood test showed he was having a slight case of rejection, which is normal. They've reduced his anti-rejections medication again. Other than that, he has nothing new medically to report. He's physically getting stronger which is GREAT to see! I am so thankful to see him progressing as quickly as he is. It's amazing :)

Finally an update!

2009-06-22T18:33:00.000-07:00

Sorry it's been sooo long since an update! We got home and our home phone and internet were both shut off since we were gone so long. We couldn't get the internet back up until we had a running phone line, and they couldn't make it out here until today!

Other than running to the store once, and out to ice cream with my family I haven't left the house. I really haven't minded too much though. We've had alot of visitors, which has been very nice. If you're thinking about visiting, we'd love to see you :) Malakai can't be in public for another month or so to keep the risk of him getting an infection low. After he's off his steroids, he'll be normal and able to go out. Thankfully he can go outside...hopefully we'll be planning a trip to the zoo or something fun soon!

Malakai is doing AWESOME! He is doing things I wouldn't have thought he'd be doing until a month from now. He's rolling over, sitting up for a minute or two unassisted, he's standing with support, he's still eating like a pro, he's waving bye-bye (my personal favorite) and new today...he's drinking juice from a bottle! And last night he slept a 4 1/2 hour stretch...that's the longest he's gone in months! I am just tickled with how well he's doing. He has a few appointments coming up, one with his primary pediatrician, and one with the team at Riley. His docs in STL wanted him to be seen close to home so the docs here would know his "baseline" Then we will have a home health nurse come out once a week and draw his blood levels. Other than that, we won't have to go back to STL until next month!

We had a work day at the house on Saturday. THANK YOU to everyone who came out and helped. It was such a blessing to us to have the help. We got the outside of our home almost completely done (landscaping, power washing, weeding, etc)! Then Sunday, with the help of some great people, we cleaned out our basement. That was an accumulation of about 6 years of stuff! So glad it's done! Those were the things we'd wanted to do for awhile now, but with Malakai being ill, it just didn't happen. I want to say a special thank you to Derek and Candy. They stepped up and helped us out like family would do. We are so grateful to have you as friends! God bless you and your family!! I also want to thank everyone who's given us financial help. We thank you from the bottom of our hearts. God bless you all!

We had a reporter come out today to do a piece in the local paper about Malakai. It'll be interesting to see how that turns out! It was difficult to tell his story, start to finish, to someone who knew nothing about him...I mean where exactly do you start and what information is important? Hopefully I portrayed his story accurately!

That's all I can think of right now. I have a lot of cleaning to do while the kids are sleeping. Now that our internet is up and running, hopefully I can keep this updated a little better!

Our journey in St. Louis is almost over...

2009-06-16T08:35:00.000-07:00

These pictures are in reverse order newest pictures first...Blogger does that for some reason...I could fix it, but trying to nurse a baby and keep a toddler from going crazy is more important :)

Here's a picture of his beautiful scar...Thanks Dr. Anderson and Dr. Lowell, it looks awesome!

Can you see the chub on his legs? Awesome !!

My beautiful little boy...ice cream on his face and all!

It's getting harder and harder to get a decent picture of Makena. She's on-the-go all the time!

Makena pushing Malakai in her doll stroller, doesn't he look thrilled?

Riding Kena's bike

Eating Lasagna, his absolute favorite food!

This one was taken while he was still in the hospital, notice his feet crossed??

Meeting his cousin Addison for the first time, I think he loves her already :)

Munching on a bagel

We are going home TOMORROW! It's been a long 8 months, but I am so excited to be bringing home a healthy baby boy! His ultrasound on Friday came back completely normal. I totally expected it would. He's still having a few issues with his Tacro levels being a little low. When we left the hospital, his dosage was 0.4, they increased it to 1.0, 1.6, 2.0, 2.4 and now it's to 3.0. He lost a few ounces when we went in yesterday, but he hadn't eaten breakfast yet and he's no longer on the tube feeds at night. So I can only guess that is normal. He was 13 lb 6.8 oz.

Cindy (Josh's mom) came in last night and she was amazed at how he looks. Pictures don't do him any justice. You have to SEE him to see the big difference. He's starting to sit up on his own, and he's able to stand with support. It's incredible!

Josh's friend, Derek, is putting together a work day at our house for those who want to help out, but can't financially. We've had our home on the market for 6 months now. We've had a lot of showings, but no offers yet. We've had so much going on in our lives, fixing up the house has been the last thing on our minds. I think they're doing it this Saturday for anyone who would like to help out. Anyone interested can contact him at Derek@petermanhvac.com.

One month ago today...celebrated with a GREAT appointment

2009-06-12T11:13:00.000-07:00

Happy one month Transplant day, Malakai!! I can't believe it's already been one month!

First of all...Malakai weighed in at 13 lbs 9 oz! He gained 1 lb 3 oz in one week!!! That's unreal :) So we are happy to announce, we have kissed his feeding tube GOODBYE!!! We couldn't be any happier. We actually took it out as soon as they said we could...didn't want to leave it in any longer than we had to! Praise God, he looks like a normal baby! Michelle, his nurse practitioner, couldn't stop squeezing his chubby legs. I think she was floored that he'd gained so much weight and chub!

We haven't heard back about his ultrasound or his blood levels yet. I'm assuming there will be no surprises there. It's all about tinkering with his levels right now. But I am pretty sure we will be getting to go home on Wednesday. It almost sounded like they may have been ready to send us home today, but the doc said he wanted to see us one more time. It will be so refreshing to get out of here! We love our apartment here, it's been so nice to just be together as a family. But I can't wait to get back to our normal life. Emma turned 3 yesterday (my oldest niece) and we weren't there to celebrate. Thankfully the party has been delayed so Makena can be there :)

We are heading to the park later this afternoon. Makena has gotten into quite a routine. She'll say "We're going to eat lunch, then we go to the park." Maybe I'll bring the camera along and try to get some pics of Makena playing and Malakai without that horrible tube taped to his face!!

It's been a great day. I am so thankful for my son's life and what a precious baby he is! If you've never met him, I want you to know he can light up a room with his smile. He's just a terrific baby! Thank you donor family...You will always have a special place in my heart!

Before and After

2009-06-11T15:33:00.000-07:00

It's amazing what a new liver has done for Malakai. Check out the difference!

These were taken the night before his transplant:This was taken mid-April, he was basically skin and bones!

And after!!! Look how AWESOME he looks!!
If you're not already an organ donor, sign up to be one. If it hadn't been for an organ donor, Malakai may not have made it! I think about our donor family often and their angel that saved his life. I hope they know how much they mean to us! God bless them!

P.S. I'm happy to report the little girl at St. Louis Children's Hospital who was waiting for her liver recieved her "Gift of Life" on Sunday. She's doing well and recovering quickly! Praise God!

Thanks AT&T...Internet is BACK!!!

2009-06-09T15:13:00.000-07:00

So we've been at this apartment for a month now, and I just figured out how to hook our computer to their internet! I'm so used to having wireless, I didn't even SEE the modem to hook it to the landline phone! lol

Malakai is doing well. He had a follow-up appointment this morning to have his labs drawn. He's showing slight signs of rejection, which is normal. All his liver numbers were a little elevated from his last labs on Friday. They've increased his Prograf (Tacro) and his Prednisone (his anti-rejection and steroid). His incision has been "oozing" from a little place since we were discharged last week and they're going to do an ultrasound Friday morning before his appointment. I'm not really concerned, it's really started to slow down and it's not red at all. I change the dressing on it twice a day and I've seen improvement. It looks like we'll be here in St. Louis until June 19th. That's 10 more days! I will be so excited to be home and for everyone to see how GREAT he's doing! He's a completely different baby than he was when we left.

We're allowed to take Malakai anywhere outside. I'm so thanksful for that! We all get stir crazy being in the apartment too long! So we decided to go to the St. Louis Zoo today. We forgot the camera, so we didn't get any pictures :( But I do have a few from my phone. Not the greatest quality, but at least you can see how GREAT he looks!!! Enjoy :)

Malakai and Mommy at the hospital the day before we left...He got a lot of looks in his sling!

Makena in her pool on our balcony. Great idea!

Doesn't he look AWESOME???

It's so good to be home!

2009-06-06T16:51:00.000-07:00

We don't have internet at our St. Louis apartment, which is not fun! I have my phone that has internet, but for some reason it won't let me write on here! Larry (Josh's friend) came out today and brought his wireless internet adapter, so I am finally able to update!

It is soooo good to be all together as a family. Makena was a little confused when we got home I think. She asked a few times when we were going back to the hospital. He's doing great! He had an appointment yesterday and they said he was "perfect!" It is so good to be told your baby is perfect. Josh's aunt said "We always knew he was perfect, he just needed a little help from God along the way." I totally think that's the way to look at it. He's finally the healthy baby he is supposed to be!

They're still trying to figure out his Tacro (anti-rejection medicine) levels out. As he gains weight and his body changes, they'll have to increase/decrease the amount he gets. But other than that, all his levels are completely normal!!!

We've been going to the park every day. Good for Makena to run off steam, good for Malakai to get some fresh air. We've been taking our lunch and feeding him there. He's eating about 5 jars of baby food a day!! It's incredible to see how much he's eating. His weight was 12 lbs 6 oz at his appointment yesterday. I expected to see him weigh a little more, but I guess it will come. They've said a week or two more of the tube feeds at night and if he continues to eat like he is, we'll be able to get rid of it! I can't wait for that!

Well, hopefully I can update again soon. A few more weeks and we'll be home to Indiana. Pray that it's sooner than later :) God bless!

Home sweet home!! But my phone won't let me post anything! Details to come! We are home and all very very happy!!!!!!!

2009-06-03T19:29:00.000-07:00

Going home tomorrow!!!

2009-06-02T15:07:00.000-07:00

Tomorrow is the long awaited day! I am beyond excited :) He is doing fantastic! He's eating baby food from a jar, something he wouldn't even act like he was interested in last week. Our hope is a few more weeks on the pump and we can kiss that thing goodbye forever! He's defiantly showing that he's gained some strength and feels good. He's not wanting to sleep...at all! He's up more than he's asleep!

Rita and Brent came this weekend and I enjoyed having them here every minute! Josh and Brent took the older kiddos to the zoo Sunday and to the arch Monday and Rita stayed here in the hospital with Malakai and I. Today, Rita and i took them to the Science Center and Josh stayed here with him. The Science Center had an exhibit about transplant that was so interesting. I wish I could have paid more attention to it. Makena and Clay were running aroudn so it was difficult, but it had all the organs and a video of an actual transplant. Lung and liver were the two I watched (because of my history with dad and Malakai) and it was amazing to see. The liver is so much bigger than I'd thought!! And to watch the lungs inflate after they were in...it was so neat! And they had an interactive thing that kind of showed the steps to how they match an organ once it is ready for donation. That was pretty cool, too. It was kind of weird watching it, thinking, "My son JUST went through all of that!" It was so nice to feel normal again, and meeting Addison was GREAT! She's adorable, and such a sweet natured baby!

I am so in love with my baby boy. I am so thankful to God that he chose Josh and I to be his parents. He has been such a blessing to us and I pray that he makes a huge impact on others lives. He is our miracle, and he has forever changed our lives. I appreciate so much more than I did before. I don't get nearly as frustrated with the little things. I don't judge others like I did before. I am just so thankful that he is alive and well. Thank you for your prayers for my son. Without them, it's hard to say where we would be. I can't wait to come home so everyone can see how AWESOME he looks!

We don't have internet at our apartment, so I may not get to update as often as I'd like. I'm sure I could find a Starbucks or something :) But I will try to get on my iPhone or have one of my sisters update when we know more. Two weeks and we'll be home in Indiana!

Welcome Jack Owen Bradley...

2009-05-30T15:44:00.000-07:00

Congrats Sarah and Dan...I can't wait to meet your new little guy. Jack Owen Bradley was born earlier this afternoon, weighing in at a whopping 8 pounds 7.5 ounces and 21.5 inches long....and he was 3 1/2 weeks earlier! That's a BIG baby. Love you guys!!!

Here are some pictures we took this morning when we went out to the garden.

The turtle she named "Pokie"

She has slipped one time, got her foot wet and didn't like it very much! She's much more careful now :)

The loves of my life :)

Josh took Makena to the apartment for a nap so I decided to take Malakai out to the garden to get some fresh air. We were sitting there, enjoying the beautiful weather and I see Malakai staring behind me. So I look and there was a man talking to him. This is what he was saying, "Look at you, you little flirt. You're so pretty!" So then a few minutes later he walks up to me and says "You've got one pretty princess" I almost laughed. I've never thought he looked like a girl! I said, "He's a boy..." LOL I felt bad that I hadn't corrected him before...oops! He was in a shirt that said "Mr. Popular," had blue socks and a blue blanket. LOL

Not much to add today, he's doing great! He did poop on me once though...Love being a mom :)

Eating the other day...still not too thrilled with eating real food...

Checking out the card from the Sibling Playroom...

The tube is gone!

2009-05-30T09:01:00.000-07:00

They came and pulled his chest tube this morning. He didn't drain much last night and they decided he didn't need it anymore. They warned us it may have to go back, but he's doing great. I don't think it will come to that! They will do another x ray tomorrow morning to check his lungs, but hopefully it will show clear lungs and no fluid! He is so much happier now and can breathe alot better. We will be here through Wednesday so he can finish his antibiotics and we will be able to go home to our apartment.

And...Sarah (my twin sister) is having baby Jack! She called me at 4 am and told me her water broke and they were heading to the hospital. He'll be considered premature because he'll be born before 37 weeks (she would've been on Tuesday) We can't wait to welcome him into our family! Our family has had alot this month...Rita (my older sister) had her baby, Addison and Malakai had his transplant on the 12th and Sarah's going to have Jack today! How wonderful :)

I took some pictures of the kiddos today in the garden. Great place to take pics. I will upload them as soon as I find my camera cord. We moved rooms (Yes, this is room #5 for us!) and I cant seem to find it! Check back soon!

Good day today

2009-05-29T20:37:00.001-07:00

Malakai had a good day today! His X ray from this morning showed clear lungs...Praise the Lord! He has been put on the nasty formula, called Portegen, that is supposed to be the best for the milky discharge, which now has a name :) It's called chylous ascites. Still don't fully understand it. I even Googled it, still confused! The CT Surgery team wanted him to be solely on the Portegen formula, no breastfeeding. The liver team had a different opinion. So they're going to give him the weekend to see what he does. The CT team thinks his ascites won't dry up if he's continuing to get milk. But he LOVES to breastfeed, and to take away the one thing he loves....the liver team said they weren't ready to do that yet. (Thanks guys!)

We took Malakai and Makena out to the garden today. It was beautiful. The sun was setting, it was warm still, but the air was cool. Just perfect. I think he loves being outside. It was a little difficult getting him out there with his chest tube and his IV pole, but worth it. He just looked around and coo'ed. I am so amazed by him. He's such a strong little guy!

Rita and Brent are coming out this weekend. I get to meet my new little niece, Addison! She was born the day Malakai had his surgery. I can't wait to meet her!!!! Hopefully we can spend some quailty time together and it won't be too crazy with all the kids!

We found out today that the little boy I mentioned last night didn't make it. My heart aches for his family. His name was Elijah. Please keep his family in your prayers. I pray that God blankets them in peace. Rest in peace, little Elijah! I am just reminded how thankful I am for my babies. It was a rough road getting pregnant and I feel so blessed to have my two kids. Even after all that Malakai has gone through in his life, I am just so lucky to be his mom! Parents, hug your kids a little tighter tonight!

Good news from today!

2009-05-28T19:25:00.000-07:00

Well, there seems to be NO INFECTION. At least they couldn't find it. So that's good news! The not so good news, they had to put a drain tube in his chest. He had a moderate amount of fluid. They put the drain in and he's breathing much easier now. The fluid coming out of his chest isn't exactly what they thought it would be. It's sort of milky, and they said it's from having too much fat (from milk) in his diet that he's not processing. I think. His doctor tried explaining it to me three times and it still didn't sink in. I will probably understand it better tomorrow when they decide what to do. They said to do exactly what we've been doing tonight with breastfeeding and continuous feeds on the pump and see if it's still cloudy in the morning. The formula they would have to put him on is a low calorie and he needs all the calories he can get right now! So we wait. He'll have another chest x ray tomorrow to check everything. And then hopefully after he's finished his antibiotics Sunday, he'll be discharged on Monday!

Josh talked with a dad tonight who is here with his 2 1/2 year old son who is waiting for a new heart. He's not doing very well, and had to be resuscitated three times last night. They had put a "do not resuscitate" status on him today. Josh met their entire family and prayed with him. I think he was glad to be of encouragement to him in this horrific time. After praying with him and meeting their family and the little boy, he called Josh and said they removed the DNR status. Please pray for this family. I don't know the little boys name, only the dad's name is Shane from Kansas. I can only imagine what they are going through right now.

I also ran into the little baby girl who is waiting on a liver, with the same nasty disease that Malakai had. She's 6 months old and soooo cute. Please pray she gets her new liver very soon. She's here at Children's until her transplant. They sent her home but she had to come back because she had fluid on her lungs! Her mom seemed very worn-out...I totally feel for her. Pray for God's grace to cover her as well! Her name is Shawnteona. (I think that's how you spell it!)

So today was very long, Malakai has been sleeping since coming up from recovery. I don't like when he's been put under anesthetic. Although he's seems to be more comfortable...I'm grateful for that. Hopefully he sleeps well tonight. We have visitors coming this weekend. It will be good to see some familiar faces and get a break from the same stuff, different day routine.

I can't wait to wrap my little boy in my arms and walk out of the hospital! I can't wait for life to settle down and become normal. Thank you to everyone who's helped us out and donated. We really, really appriciate it! Keep praying he stays strong and continues to heal beautifully.

He is in the CT Scan now

2009-05-28T13:17:00.000-07:00

Another bump in the road...

2009-05-28T08:45:00.001-07:00

So the CT scan is now going to include a chest scan. His O2 level dropped last night to 88 and they saw some fluid around his lung. So they're going to scan his chest while they look for the infection. He is most likely get a chest tube to drain out the fluid. Basically the fluid is ascites that has traveled up from his belly. She also said it looks like he has a little pnuemonia. But they won't treat that any differently. He's got enough coverage with the antibiotics and once the fluid is gone, his lung will recover. They're going to give him another blood transfusion later this afternoon because his red blood count was a little low. She said it most likely is due to the amount of blood they've been taking. Big picture, he looks great. His liver is working perfectly and there are no concerns on that end. Once his nutrition picks up some and we get rid of the ascites, he should take off! They're still saying we'll probably go home on Monday, I sure hope so. I think he'll do so much better. When you're here, the nurses come in for vitals at 12:00, 4, 6 and 8 am. Then they draw blood at 6 and weigh him. I seriously don't know why they have to strip a baby down to a diaper at 6 in the morning to weigh him. That bugs me! Let him sleep!! So I think once we're home he will have a better shot at recovering. Continue to pray for all of us. Pray that his CT scan goes well and best case scenario, he gets the tube, drains the fluid, and we never have another problem.

CT scan tomorrow...

2009-05-27T20:08:00.000-07:00

He's scheduled for a CT scan tomorrow at 2, which means no food after 6 am! It will probably be a long day! He normally does OK without food, but that was pre-transplant. Hopefully he'll do just as well. The docs said that if they do find something on the scan, he'll go in Friday to have the fluid drained. If not, then he'll just finish the antibiotics and we'll go home. Monday is our discharge day, and it couldn't come soon enough. We took both of the kids to the playroom this afternoon, and it was so nice to get out of his room. There's a really nice garden on the roof of the 8th floor where we can take him. That's nice to get fresh air! It's beautiful and peaceful. I think he enjoys it, too!

Well, tonight is my first night at the hospital alone! Josh took Makena back to the apartment because she woke up at 6 am and didn't have a nap. We figured it would be a looooong night if she didn't get a good nights sleep. Hopefully she's refreshed and ready to go in the morning!

We have a new website coming soon! I will put up the address as soon as it's ready!! It's more of a donation website to help with the absolutly overwhelming bills and expenses we have right now.

Continue to pray for strength for all of us! God bless all that are praying for our little guy!

We've been pushed back another week!

2009-05-26T16:14:00.000-07:00

So the surgeons/transplant team wants to keep him here another week to finish his antibiotics. They said they're going to schedule a CT Scan for Friday to check for any pockets of fluid that could be causing his fevers on Friday/Saturday and his cultures to grow. They've said it could be nothing, or it could have come from a number of places. They don't believe it's an infection in his Central Line though. The reason they've waited to go searching for an exact location of the bug is so that he could fight it with the antibiotics and be strong enough to get rid of it. She said there's a possibility of having to be put under anesthetic and have a drain tube put in. It's all very confusing, I had a very hard time understanding/comprehending all that she was telling me. Bottom line, we'll be here until at least Monday and a CT scan is going to be done on Friday. What we don't want to happen is have the antibiotics kill off the bug, then come back because it wasn't treated right.

I just feel like the wind has been taken out of my sail! I thought we'd be home by now and we've been told another week! The most important thing is that we're in the right place and they're able to treat him. I'm so thankful for him and his recovery! Please say a prayer for us, it's getting harder by the day!

Makena

2009-05-26T11:55:00.000-07:00

I feel like I don't talk about Makena as much as I should. She has done so well with adjusting and adapting to our "new life." I couldn't be more proud of her. She has sooo much energy, and thankfully they have kind of a daycare type setting for her to let some of it out. During their breaks, she comes up to his room and eats lunch/dinner, then goes back. She loves it in there and they all love her. Yesterday, being Memorial Day, they weren't open during one of their normal sessions, and Makena went to the nurse's station and "helped" then for about an hour. She just loves having the attention on her. She's been sleeping here as well, which I wouldn't have ever thought would have even been a possibility. But she goes right down (later than normal, but what can you expect?) and sleeps til about 8! Her little personality is just blossoming and I love watching her grow! I dream about taking her to Disney (somewhere I've never been) and the beach, and amusement parks, and just watching her experience new things. I love that she's learned so much from me already, and I can't wait to teach her more! I think that's the best part about being a Mom :)

I'm happy to say...

2009-05-26T08:03:00.000-07:00

His cultures are NEGATIVE!! They will continue to run his three antibiotics because they're 10 day courses, but she mentioned possibly letting us go home and run them ourselves. We'll be here a few more days I'm sure, just to watch him. But I'm hopeful by the end of the week we'll be home (well, St. Louis home). We've stopped his bolus feeds during the day, so he's just breastfeeding and eating table foods. I truly believe we are on our way to being tube-less!!! He's been steady around 5.8 kg ( 12 1/2 lbs) for the last 3 days.

New pics

2009-05-25T19:53:00.001-07:00

I decided to put some new pictures up for your viewing pleasure. He's really starting to look great! We can SEE the difference just a pound or two can make on such a tiny body!

This is seriously what we ordered him from the "Dining On Call" This was HIS food...LOL We weren't sure what he would eat so we got a variety...his favorite? The spaghetti and mashed potatoes!

A pic of him after eating...Mommy hadn't cleaned him up yet! Love those sparkly eyes and sweet smile!!

Love this one!

He loves to play with styrofoam cups! I'm not sure why...not just any cup will do! And his mohawk was back!! Hopefully after he's not laying on his back so much I can keep it that way! I love his little mohawk!

Our lovely accomodations...Makena sleeps in one, Josh in the other, and Malakai and I share his hospital bed. Comfortable? Not in the least!

His cultures are still positive...

2009-05-25T08:05:00.000-07:00

The surgeon just came in and said his cultures from yesterday were still positive. He said this was "strange." He said normally at this point they start to show up negative. They're going to give it until tomorrow and if it still shows up positive they're going to have to decide what path they're going to go down. He said the good thing is, he's not acting sick...he's eating great which is a good sign. The doc also said they're going to test him for c-diff because he's had a lot of runny poops. Please continue to pray that he fights this infection and we get over this bump soon!

Better day today

2009-05-24T14:14:00.000-07:00

Malakai slept so well last night! He woke up alot, but went back to sleep quickly and slept til 10:30 am! He's been itching where his incision is...I can only imagine how much it must itch. The surgeon came into and said his cultures came back with a particular bug...I'm not even going to pretend I know how to spell it. But it's a good thing we know what it is now, they can treat it accordingly. He's on three different antibiotics now, and they're probably going to stop one of them tomorrow. He had a blood transfusion yesterday and his hemoglobin level was normal today, so that's good. He has been acting a lot better today...this morning they came in to flush his NG (feeding) tube and it wouldn't let anything in...they left it alone and tried again a few minutes later, still nothing. So they waited a few hours and it still wouldn't allow anything to go in so we had to take it out. She then tried to push some fluid through it after it was out and still nothing. So it was blocked, which is strange because he hasn't had anything go through it other than formula. So today he has been tube free! We decided to see how he did without the bolus feeds. He's nursed about every 2 hours and ate table food really well. He had spaghetti, mashed potatoes, and applesauce with chocolate pudding. He'll be put back on the tube tonight for the continuous feeds...Hopefully we'll still get to go home on Tuesday. I haven't asked because I'm not sure I really want to hear the awnser! Praying we go home soon, it's really starting to get to me...being here in the hospital and all. I'm sick of it! I wanna be home with Makena and feel normal again! But then I step back, look at the big picture, and thank God that we are where we are!

Another fever...

2009-05-23T09:15:00.001-07:00

He spiked again this morning...exact same time, exact same way. He started to tremble and whine...like an "I don't feel good" whine. Then he started to get a little warm and within 15 minutes his fever was higher than 102. Tylenol helped bring it down. His blood cultures came back positive, meaning they've found infection somewhere...Most probable, and really best case scenario is it's in his central line and IV antibiotics will treat it. He's on three different antibiotics right now and they've stopped one of his anti-rejections meds for a few days. He's not been sleeping well, still, and they said that can be from his meds. Hopefully over time that will go away, once his body is adjusted to the medications. His hemoglobin level was low, 6.8, so they're going to give him a blood transfusion this afternoon. Just a bump in the road, but he's still full speed ahead in my book. I look forward to when all of this is just a distant memory. I'm beginning to feel exhausted!

Bummer...not being discharged today!

2009-05-22T15:28:00.000-07:00

Well, I knew this could happen...just hoped it wouldn't. Malakai had a really long night last night. He cried for over 2 hours and woke up early this morning crying again. Then he started to tremble a little bit and I felt his head and he was warm. Over the next hour, his temp went from 100.6 to 102.9. His heartrate was 216 and he was breathing really fast. So they took some blood for cultures and started an IV. So we're here until Tuesday, because Monday is Memorial Day. Bummer. Oh well. I'm glad we didn't go home and have to come right back. It will be really tough though being here with just Josh and I. We've had help the entire time until tonight. Mom is supposed to come tomorrow and stay through Sunday, but then we'll be alone all next week. A couple of friends had talked about coming the following weekend and then Rita and Brent (my sister and brother-in-law) are coming on the 1st. It'll be at least until tomorrow before we hear anything about his cultures, hopefully they show nothing and they'll tinker with his meds some and hopefully by Tuesday he'll be ready to go! Say a prayer for him...his fever went down after a few hours and he's back to smiling and eating again. He's a tough little guy, that's for sure!

We ARE going home tomorrow!!

2009-05-21T16:26:00.000-07:00

We get outta here tomorrow! A couple more weeks in St Louis and we will be back home again in Indiana! YAY!!

Tomorrow may be "D-Day"!!!!

2009-05-21T08:42:00.000-07:00

We just got the news that he will most likely get to go home tomorrow! Michelle, the nurse practitioner hasn't yet talked to the surgeons to OK discharging him tomorrow. She said from a liver standpoint he doesn't need to be here. She said if they're not ready to send him home tomorrow, that they'll get it all ready for discharge Saturday. So it looks like we'll only be spending one or two more nights here!!! They've started the bolus feeds today and if he does OK with them, there's no reason he needs to stay! He had a little issue last night with leaking from one of his drainage tube sites. He lost alot of fluid. But they've patched him up and he's good to go! His weight is now 4.93 kg which is about 10.8 pounds. That was his weight in December. He was 5.39 kg on Wednesday, so he lost about a pound of fluid overnight! We will be staying in St. Louis for a few weeks...we have our apartment until the first week of June. So we will be here until then. I am so excited that my little boy is doing so well! PRAISE GOD!!!!! He's really starting to act like himself. I can't wait to see him GROW! It's amazing the changes I have seen already, and I am sooo ready to see him be a baby. He's not really had a real chance at life yet. I am so thanksful for his progress!

Hopefully going home soon...

2009-05-20T17:01:00.000-07:00

Today has been a great day...We moved last night into a very quiet room. The only thing I can even complain about is that it's too cold! He slept much better last night. The liver team decided to increase his feeds through the night to 20 ml/hour and I think he was more satisfied. Maybe that's why he's been so cranky...because he's hungry. They're going to start giving him bowlis feeds, meaning 2 ounces at a time, rather than dripped over an hour. The thought there is to get him into the hungry, full, hungry, full cycle. I hope it works.

I met a mom last night, as I was leaving to take Makena home, with a little girl with Biliary Atresia that is waiting for a transplant. It's weird...it's almost exciting to meet someone who has a child with similar circumstances. It makes you feel connected, like they know what you're going through. She was 6 months old, completely adorable, and had the same personality as Malakai. Very mellow and laid back. And her legs were crossed...Malakai's legs are always crossed. Anyways, I've always been on her end. The parent with the child before transplant facing the absolute unknown. I pray this little girl gets her Gift of Life very soon.

Sarah, Jessica and I took the girls to the zoo today. That was nice to get out of the hospital for a little while. Made me feel human again. They had so much fun. I'm glad we went.

The surgeons said we are going on the right track and we're probably going to be heading home soon. He really just needs to get his nutrition back on track. All of his levels were "Perfect"! Can you believe it?? PERFECT!! He has never had perfect levels. And something I realized the other day was he no longer has Biliary Atresia. When he got a new liver, his BA went away. Amazing. I am just so amazed with the work God has done in his short life. Everything has happened just right for him to make such great progress. And the fact that he was so sick and I was given such grace that I didn't even see him as sick! I just look forward to loving my healthy, beautiful little boy. I have such respect for parents with sick kiddos. I realize there are much worse situations. I have learned a whole new outlook on life. For that I am so grateful! I want to plan a HUGE first birthday celebration...complete with a bouncy house and miniature ponies! LOL If you think I'm kidding, I'm not. I want everyone who's prayed for Malakai to be there. Everyone! I think it's important for everyone to see how great he looks and celebrate such a huge milestone with us!

Ok, I am rambling now. Off for tonight. He's doing wonderful. He's starting to smile and play with toys. He's really starting to look like little Malakai again! Thanks for keeping us in your prayers!

Looooong night, early morning

2009-05-19T08:22:00.000-07:00

Another long night with Malakai, but thankfully after a shower I am feeling much better. I don't know what's up with him. I'm not sure what's bothering him, but he doesn't fuss..ever. So I know something has to be upsetting him. He has another tooth coming in, I think that may have something to do with it. And he's probably hungry. He's not eating super well...hopefully as he gets to feeling better his appetite will pick up. They've talked about moving us down the hall to a more quiet room. I hope it helps him sleep better.

Sarah, Emma and Jessica are headed this way this afternoon. It will be good to see them. Sarah is due in a month, so this will be the last time she is able to travel out here. I am really hoping to make it home before Jack is born. I missed Addison's arrival (Rita's little girl). She was born the day of the transplant. What a day, huh?

Headed to bed

2009-05-18T20:35:00.000-07:00

I am heading to bed, hoping for a good night of sleep...or at least better than the last two nights have been. Michelle, our transplant nurse practitioner came in today and told us that as soon as Malakai smiles, she'll sign our discharge paperwork! LOL Everyone knows how smiley he is and so they know he'll be feeling well enough to go home when he smiles! She said "You have to smile at ME, not mommy and daddy and I will send you home!" Now home means St Louis, not Indiana. But I can't wait!!! Hoping in less than a week we will all be together. Keep praying for us!

This pic just makes me smile

2009-05-18T17:29:00.000-07:00

When I'm having a hard time or Malakai is really fussy (like right now) I just look at this pic and it makes me smile! This was taken the night before we got the call. Still smiling and having a good time!

This one is really cute, too!

I couldn't be happier...

2009-05-18T14:42:00.000-07:00

He is doing so well! They haven't technically talked discharge, we're certainly not ready. But they have said he is totally going in the right direction! I asked what he needed to be discharged and he has to have no fever (hasn't had one at all) eating well, and labs stable. His labs continue to get better each day. He's not eating as well today as he did yesterday. He wants to breastfeed alot, but my supply is so low. He actually drank formula out of a little medicine cup earlier. He just does not like the bottle!

Last night was a terrible night of sleep for everyone. He woke up wimpering/fussing every hour! I'm not sure if he was in pain, hungry, irritable, uncomfortable...I'm not sure. But he didn't want to take a bottle. He was given pain medicine about every 2-3 hours. His incision opened a little last night and bled. So the nurse put more of the surgical glue on it. So I'm sure that was affecting him some. They pulled his last drain yesterday and he's a little swollen. The surgeon said he wanted to go ahead and pull it even though he was leaking a ton so he wouldn't "dry up." So now it's just staying in his body. He's continually getting Albumin, which is supposed to help pull fluid out of his body and put it into his vascular system so he'll eventually pee it out.

Makena just fell asleep in the bed with him. It has to be one of the sweetest "Kodak" moments I've seen in awhile. She has so much energy, she never just falls asleep. So to get a picture of the two of them together is something special. He is now sleeping with her, but the pictures I got...he is awake. Here it is...Sweet huh?

He's on the right track...keep it up Malakai!

2009-05-17T12:02:00.000-07:00

A lot has happened in the last few days, it's incredible. He lost another drainage tube today, his last one! Watching the surgeon pull it out (he did it bedside) was awful. That tube looked 12 inches long! And once it was out, he lost alot of fluid...it just wouldn't stop coming out! He was finally able to put the glue on it and get it to stop. So he has one IV in his wrist, his Broviac, and his feeding tube...that's it! We gave him a little bit of a bath this morning to clean up the obvious spots. He looks so much better today. He's acting very crabby, which I can only imagine how he's feeling. He has every right to be crabby! He's breastfed some, and actually has taken a bottle. As much as I am into breastfeeding, if we can get him to take a bottle, I will almost be relieved. This pumping and storing and only getting 1-2 ounces is getting to be pretty tough on me. Whatever is best for him, I will certainly do. Last night he was given pain medicine orally and threw it up. So she came back with more and he threw that up. So he's back to Morphine, but hopefully he won't need it much longer. It makes him lethargic. Keep praying for us. We're hoping we aren't in the hospital too terribly long. I can't wait to bring him home!

He's doing GREAT!

2009-05-16T11:55:00.000-07:00

The doctors and surgeons couldn't be more pleased with him. So from a medical stand point, he's doing wondeful. From a parental standpoint, I hate to see him so grumpy. He's not in pain, just irritated. He cries whenever he sees a nurse coming in his room. He lost alot of his tubes and drains yesterday. He had a chest tube drain and that's gone! He has lost 3 of his 4 IV's. He still has his Broviac, a central line into his heart...it will stay for a few months. They can draw labs and give him medication without having to stick him. Let's see, he still has a JP drain (that's what it sounds like they're saying...lol I could have that totally wrong) which is draining the fluid out from around his liver. It was bright red, looked like blood, right after the surgery, and it is now pink...which is good. I slept in the bed with him last night. That was uncomfortable, but I loved it! I love that I'm able to comfort him. I missed that connection with him...and drum roll please....He breastfed this morning :) He has been REFUSING a bottle of anything. No formula, no breastmilk, no pedialyte, no apple juice...nothing. So we get the NG feeding tube back :( I kind of assumed with how malnourished he was, that they would put him back on it...just to fatten him up. The surgeon said yesterday that Malakai had the most prominent ribs of any baby he'd transplanted! I was shocked. I mean, I knew Malakai was very skin and sick, but to say he was the most boney of any kid he'd transplanted shocked me. I guess I wasn't really telling people how bad he was because it was scary. Just not knowing what would happen next or how soon things would be happening.

Mom, Brian and Rachel all left today. I was soooo thankful to have them out here during the first few days of transplant. I don't know what we would've done without them! Brian and Rachel kept Makena so we didn't have to worry with who would be keeping her. We knew she was in good hands and she likes them. THANK YOU GUYS SO MUCH!!! Makena has been going to the Siblings Playroom they have on the lower level. I am so thankful for that place. She loves it down there and it's somewhere she can go from 9-12, 1-4, 5-8....they give us a pager and we know she's safe!

The nurse asked me today about how he was with getting his tube put in and I told her it was getting a little more difficult as he got older and she said she wasn't the best at it...so I took that opportunity to say I would do it. I figured with as much practice as I've had, I knew I would do it right. Funny that I am doing the nurses job. I really should go to nursing school after all this is said and done!

Well, it's taken me all day to update this. Hopefully I can get on later and make another update that makes more sense.

He's doing well, not too much to report

2009-05-14T10:55:00.000-07:00

Same thing as last night basically...although he has had Pedialyte from a bottle. We are hoping to break his aversion to bottles and get him to start taking formula or breastmilk from a bottle. He's a little sluggish, I think we are going to start weaning him off some of his pain meds. I can tell he's becoming more aware of his surrondings...he's starting to pull his oxygen out of his nose! He doesn't like it and won't leave it alone.. We may have to restrain his little arms, I'm sure he'll love that! He's doing great though. The docs are very pleased! Here's a pic of our little man from this morning...

What a day!!!

2009-05-13T18:31:00.000-07:00

I am so glad the surgery is over! What a roller coaster of emotions! He is currently sleeping in the PICU and mom is going to get some dinner. We have to eat in the waiting room so I have to wait here until she's done. I thought I'd jump on and give an update.

The doctors are very happy with where he is. His levels are as stable as they expect. He has had a little trouble with pain management, he did at Riley during his Kasai so I sort of expected it. He's on a continuous morphine drip right now so he's staying pretty comfortable, but still gets irritated occassionally. He's going to have a few blood transfusions, I guess that's pretty normal. He's got a lot of drains and IV's right now. A little overwhelming. I am going to try to post some pictures of him soon. I know I would be wondering what he looked like :) We found out the donor was a 10 year old. My heart aches for the family. It's absolutly bittersweet. I can't hardly think about it. I am so grateful for the decision they made to make their loved one an organ donor. I can only imagine the pain they are going through right now. I am praying that God pours out an abundunce of grace and peace on them right now. I hope they know they saved a little boys life! I'm also thankful I didn't have to go through surgery. I can't imagine being in a hospital bed across the street and not being able to see him and talk to him. They are supposed to be getting an actual patient bed in his room so I can lay next to him. He wants to be held and cuddled, but that's kind of an impossibility right now. So the next best thing is for me to lay with him. I hope it comforts him.

I know the road ahead of us is going to be a long one, but I just am looking forward to seeing him well! I can't wait to see him do the things we have been waiting for, like rolling over, sitting up, etc. Those who've been through this before have said they didn't realize their child was as sick as they were until after transplant. I can see how this would be true! I can't wait to see him thrive! He is a fighter and I have a feeling this recovery will be fast for him!

Continue to pray for him and us. We are rotating our sleep schedules right now so that someone is always in the room. But it's still very exhausting! Thank you to all that are continuing to pray for us!

2009-05-13T04:13:00.000-07:00

First of all the surgeon came into his hospital room and said and I quote "he needs a liver transplant" no kidding that is why we are here, man it made me mad. But I quess you can't mouth off to the guy who is getting ready to operate on your kid. Anyway, they took him away at 10pm. They took us off to the waiting room with a phone in it so they could keep us updated. At 11pm they called back and said that they had all of his lines in and they were ready to start the procedure. They called back at 1am and said that he needed a little blood but that was normal and that he was doing well. Everytime the phone rang my heart stopped. I kept running through the day were the doctor came in the room at Carah's dad's (Tom) transplant and said "start praying" one of my biggest fears through this whole process has been reliving that moment. At 2pm they called back and said he needed more blood and that his old liver was out and that is new liver was being worked on. The next hour after that was very mentally exhausting, you really just tried not to think. Then at 4pm the surgeon came in and woke me up and I really thought I was going to pass out. He scared me so bad I embarassed him. He said his new liver was in and it vitalized and he was doing great. He said he was already producing bile flow. So now we are waiting to go see him in the picu.

2009-05-12T14:14:00.000-07:00

2009-05-12T14:03:00.000-07:00

Ah nothing like a hot bath

2009-05-12T13:55:00.000-07:00

2009-05-12T13:44:00.000-07:00

This is what he looked like when he was at Riley Childrens hospital in Indiana. He stayed this way for about 5 weeks. As of today his belly is normal. He had approximately 2 liters of fluid on his belly. God blessed him though he was as happy as a lark the whole time.

We got THE CALL

2009-05-12T08:38:00.000-07:00

We got the call for a donor this morning at 9am. They said there is no rush to get to the hospital. They said the surgery will be around 6pm, hopefully its not a dry run like last time. I don't think my emotions could handle any more suprises. Malakai's mood has changed since we got the call, we know he can feel the emotion in the air, even though you try to fight through the emotions. It's hard to believe that this is were the hard part really start's. Say a prayer

Wow, I have alot to catch up on!!!

2009-05-10T16:53:00.000-07:00

Alot of time has passed since my last post. We are currently sitting in St. Louis waiting for a new liver for Malakai...let me explain.

February 22 I took Malakai into Riley. He was scheduled to go in on the 23rd to give him some albumin and lasix to try to reduce his ascites (fluid on his belly) and insert a feeding tube. He had decided he didn't want to bottle feed anymore at all and had started to turn down the breast. He needed the calories, he didn't have any reserve to not eat. But the day before he started acting lethargic so Cindy and I headed to the ER. He was admitted and his sodium level was dangerously low (112...135-145 is normal) so he was sent to the ICU for three days. This made his ascites worse and at his worst he looked 9 months pregnant. We spent four weeks at Riley trying to get his belly to go down and didn't have much luck. They mentioned that he was probably heading down the transplant road and we needed to look into the hospital we wanted to transfer to. We'd decided on going to Cincinnati Childrens and scheduled for him to be seen 10 days out. The docs at Riley told us that St. Louis Childrens was a great place so we called and they got us out there the very next day. They sent a jet out to get him and Josh, Cindy and I drove out there. We were at St. Louis for 8 days and went home. He was put on the transplant list on March 20 with a PELD score (Pediatric End-Stage Liver Disease) of 5 but they requested a 25 and it was granted.

Fast forward, he got his first call April 24 and we turned it down. We were waiting to see if Cindy (Josh's mom) was a match for living donor. We wanted her to be a "back-up" incase something went wrong during the transplant. She was blood type O, which matches Malakai. To those who don't know...my dad died after a lung transplant and I would feel way better about the surgery if he had a back up. It took them 6 weeks to tell us she wasn't a match. We felt OK about turning a liver down because he was doing so well. We got his second call on May 1st, exactly one week later. We dropped everything, packed what we could and headed to St. Louis. We got to the hospital and they checked his levels. They wanted to have a starting point for post-transplant. His glucose level was really low (27...over 50 is what they want it to be) because his feeds had been shut off too long. So they got him some sugar water and hooked him up to an IV. Within 5 minutes his levels had become normal and he was acting much more alert. I took him down to get a chest X ray to make sure his lungs were clear and we waited...Perry and Cindy got there, and we were told his surgery was scheduled for 9:30 pm. They said they would come get us and take us to the OR around 8:30 - 9...at 8:35 the surgeon came in and said the liver wasn't going to work out. He said the way the "plumbing" was that they would have to take too big of a piece and it would work for Malakai. So we went home and had to come back in 4 days for his clinic appointment. While at clinic the doc expressed her concern about his weight gain and some of his levels. He needed albumin three days in a row, but they gave us the option of staying in town and coming back daily instead of being admitted. So we decided to get an apartment in St Louis. It will cut back on the stress and anxiety of waiting for the call and we would be close. I had a gut feeling that I needed to have my bloodtype checked, just in case. I was SURE that I wasn't O but wanted to check just in case. To be a living donor, you have to first have the same blood type, then they do further testing to check your liver more in depth. Sarah called me from her docs office, she had an appt that day, and told me that we were O...since we're identical twins, her bloodtype is my bloodtype. So I called up the Barnes Hospital where the living donor would be seen and got in that day. All my testing is done and now we wait. They've scheduled our surgery for May 19th if I am indeed a match. They will still take a deceased donor if one becomes available before then. But if not, and I am a match, that will be the day of his transplant.

I know there is a LOT that I left out. I just don't have the time or energy to remember it all right now. My email is Carah117@yahoo.com if anyone has any questions or comments at any time. I will try to check it daily or at least at have someone else check it for me! Please pray for everything to go smoothly and that Malakai gets his perfect liver!

He's found his voice!

2009-02-16T15:16:00.000-08:00

Malakai has officially found his voice! He has started to scream, because he knows that he can. Not a crying scream, like a "Hey, don't forget I'm over here" kind of scream. At first it was cute, now it's become annoying....all in one day! LOL I'm sad he's growing up. I want him to stay my little baby forever :( I guess it had to happen sometime. Now I'm going to have two kids screaming for my attention, literally!

Happy Valentine's Day!

2009-02-14T15:19:00.000-08:00

Nothing really exciting to update on, which in our case is a blessing! Malakai is doing well. He's happy as ever. I am sure he is the happiest, sweetest baby I have ever been around. He's suddenly gained this new "independence" and has started to reach for my glass, book, anything I have in my hands. He's also begun chewing on a blanket when he is in bed or his carseat. Maybe he'll be one of those cute kids you see toddling around with a blanket, I hope so! We got a call from Riley saying his last blood draw (a week ago yesterday) came back, and his levels had decreased again. Not by alot, but anything is good! His bilirubin level is now 4.o. Praise God, it keeps going down! We are currently trying to sell our house and had a showing yesterday, praying that God does something and we sell soon. It would be a huge weight lifted off our shoulders. Makena is turning into the cutest little girl. Her new favorite game is hide and seek, although she hasn't quite got the concept down yet. She likes for us to hide, and screams when she finds us! When it's her turn to hide, she gets confused...says she's ready, then doesn't hide. It's cute, and so much fun.

What a week!!!

2009-02-01T18:15:00.000-08:00

A LOT has gone on since I updated last! Last weekend, we went to Sarah's house for pizza. Rita and Mom came and we had a pretty good evening. Makena had started to cough around 3 pm or so, but nothing I worried about. It progressively got a little worse through the evening and by the time we got home it was pretty nasty. I asked Josh if he thought we should sleep with her so we could keep an ear on her. We decided not to, and she went to bed. Her voice had gotten hoarse at this point. At about 4 am, she woke up crying our names out and we brought her to bed with us. She tossed and turned, moaned and groaned. We decided to come downstairs and let her watch TV to see if she'd calm down a little bit. We took her temp, it was 99 and decided to call her pediatrician. Her cough had become "barky" and we were wondering what to look for. Malakai woke up, so I went upstairs to feed him. When I was coming back downstairs, Josh was going up to Makena's room. She'd thrown up and he was going to change her pajamas. She was shivering laying on the floor, so I went and put a towel in the dryer to help warm her up. We took her temp after they came back downstairs and it was 102.4.Then the nurse called back and told me to uncover her, it could make her temp go up. So she went through all the symptoms and determined she probably had croup and to put her in a steamy bathroom, turn a humidifier on in her room, etc. Her temp was up to 104.5 at this point, The nurse told me to take my temp to make sure our thermomator was working properly. As I was taking it, Makena went limp in Josh's arms and was basically unresponsive. He told me to call 911 and I hung up on the nurse. Called 911 and then we called Dan. He told us to lay her on the floor and put cool towels on her. So we did just that, and she seemed to "come back" a little more. Slowly, but surely she started to talk to us. It was the scariest thing we've been through with her. Her fever spiking so fast scared me to death! I was trembling, and trying to talk to her like nothing was going on. I didn't want her to see me scared. I was asking her questions I knew she could awnser. Finally, she began talking to me in sentences! The ambulence got to the house and she got a little frightened. There were about 5 strangers in our house, so she didn't know what to think. Her fever was down to 101.5 when we left for the ER. She sat in the ambulence like such a big kid! I was so relieved she was coming back to normal. We got to the ER about 6 am and her fever was almost completely gone! Praise God!! We saw the doc who confirmed it was croup. Her voice was hoarse and her cough was TERRIBLE! It lasted a few days and she is now completely well.

THEN, I started to notice Malakai's belly was getting big. He's never been thin in his belly, but it was definatly getting bigger. I noticed this on Saturday, and he had his 4 month check up with Dr. Bohney on Monday so I decided to wait. Dr. Bohney said he would call up and talk to Riley and let them know what was going on and they would give us a call. Dr. Molleston's office called me and told me they were going to start him on a diuretic. We had a huge snow storm (12 inches) and so we had to wait until Wednesday to get it. On Friday, I took the kids to Perry and Cindy's house and Cindy expressed her concern on how Malakai looked. His belly was bigger, he was pale, you could see the veins in his belly and head like you had never been able to see them before, he was irritable and wasn't taking a bottle. He's been bottle/breast fed since November. He's never refused a bottle until this week. So I decided to make a call to Riley Friday afternoon. (1-30-09) I got a call back at about 4:30 and told to come up to the ER to be evaluated. Two trips to the ER in less than a week!! I hope this never happens again! I took Makena to Rita's and Cindy and I headed up there. Josh and Perry were working about 1 1/2 hours away and were going to meet us up there. We got up there about 7 pm. He had blood drawn at 9 pm and we were told it would be about an hour for the results. It took about 3. They came back and said he was dehydrated and wanted to keep him overnight on fluids and recheck him in the morning. Normal levels were 21-28, dangerous is 15 or under and his was 18. It was so weird to hear he had extra fluid in his belly but was dehydrated! He was on a medication to pull fluid out of his belly, and then put on fluids for dehydration. They just had to find the balance, I guess. The nurse told us they were extremely busy and we may not get put into a room. Our nurse tried to do a cathedar to check him for a urinary tract infection, and when he was unable to get any urine, he removed it and there was a tiny bit of blood in it. The guy DID NOT know what he was doing and it made me so mad. To put him in pain for no reason! UGH!! They put his IV in and we sat in the most uncomfortable chairs until 3:45 am when we were finally moved up into our room in the Infant Unit. He weighed 12 lbs. 7 oz The docs came in and told us we would have an ultrasound to check the fluid in his belly but there wasn't much else they would do. We then waited until 8 pm before they finally gave him the ultrasound. It showed what we expected, a moderate amount of fluid in his belly (called ascites). They drew labs again this morning and his dehydration level went up to 20. He had been on a special formula that he did not like the taste of. They said we could switch him to regular formula and mix it with breastmilk to add calories. They weighed him again and he was up to 13 lbs. 3 oz. I'm not sure how much was the IV fluid, but I was happy he'd gained! His vitamin K level was low so we were sent home with a script for that. They increased his diuretic by 50% and we were told to get his blood drawn at the end of the week. The doc said it would take 1-2 weeks for his belly to go down in size, the medicine is a slow working med. Thank God he doesn't seem to be in any pain because of it. They said his liver is not processing protein as well as it should be, therefore it's being released from the blood and spilling into his belly, causing the swelling of the belly. We are continuing to pray that God heals Malakai's liver and restores it to normal. Please pray the same! Our little miracle has already been through so much, we really want this to be the last time he's in the hospital! I can't believe I almost forgot to add, his bilirubin levels have gone down again!!!! Thank you Lord! They were at 5.6 at his last appointment and it was down to 4.4! All of his levels had decreased! He doesn't have much yellow at all left in his skin or eyes. You'd never know he had liver disease! What a true awnser to all of our prayers! Ok, I'm tired of typing and need some sleep. Thank you to everyone who is praying for us! We appriciate every single one!

God bless,
Carah and Josh

He rolled over!!

2009-01-23T07:11:00.000-08:00

I went into Malakai's room when he woke up at midnight, and he was on his back! He sleeps on his belly and he'd rolled over! He smiled really big when he saw me, and I said "When did you learn to roll over?" And he smiled as if he were proud of himself! Poor little guy barely gets to lay on the floor because Makena will not leave him alone when he is on the floor...she wants to be on top of him, or trying to pick him up. So I was shocked he'd rolled over! We'll see if this continues, I'm going to try to let him be on the floor more. He'll be four months old tomorrow...time goes by way too fast!

Riley update

2009-01-21T05:32:00.000-08:00

Malakai had his appointment Friday the 16th at Riley. He weighed 12 lbs. 3.1 oz and was 23 inches long! He's a growing boy. At his last appointment December 12, he weight 10 lbs. 8 oz. So we're doing something right! The doc said he looked really good, he never really has anything to report. He's never had a fever, never acted like he didn't feel good. He's been such a great baby. Anyways, HIS LEVELS WERE DOWN!! Praise the Lord! Our prayers have been awnsered. The highest they got were 9.8 before the Kasai surgery, they dropped as low as 6.7 but shot back up within a week. Then as of last week, his levels were 5.6! And his direct was 3.5! This is great news! We will continue to pray for healing and trust that his surgery worked. God is so good!

Then on Saturday, my birthday, we went to Stone Creek Dining Company with Mom, Sarah, Dan, Rita and Brent. We all had sitters for the kids. It has been a few years since all of us have been out, to a quiet dinner. It was nice. Then Josh and I went to Starbucks and waited for our movie to start. We saw a terrible movie, but it was nice to have some "adult time."

Last night was a horrible night of sleep. I put him to bed at 10 and was in bed by 10:30, then he was up at 12:45, 2:15, then at 3:15 woke up and I decided I was not going to feed him. I kept getting out of bed to put his binky back in his mouth, then finally at 4:15 decided I had enough, and nursed him. Then he was back up at 5:45 and 7:45. I was nursing him at 7:45 and Makena started yelling "MOMMY, WAKE UP, MOMMMMMY!!!! WAAAAAAKE UPPPPP!!!" Needless to say, I didn't get very good sleep last night. Maybe I'll take a nap when the kids do!

Snowy Day!

2009-01-14T12:59:00.000-08:00

Today it is snowing like crazy, and I love it! Sarah, Dan and Emma are here and we plan to go play in it in a little while. Hopefully I can get some cute pics of the girls playing :)

I had to take Malakai to the hospital yesterday for a blood draw. I think it was the worst one yet. He screamed, and screamed, and screamed some more. It was awful. He cried so hard he has a blood vessel in his eye that looks like it's broken! She had a hard time finding his vein and he didn't like her attempting to find it. I hate it for him. I wish I could go through it for him. Poor baby has had blood drawn more in his short life than Daddy has in his entire life! But last night he was back to his normal, happy self. I said to Josh, "I don't think I could be any more in love with him than I am already!" He is such an easy baby to love. He just loves to cuddle and he smiles all the time. He started to laugh yesterday. It was the first time he's really laughed consistently. I would say "Boo" and he would laugh, I would make a funny face, and he'd laugh. He was just so sweet! Baby giggles are the sweetest sound!

We took the kids to Chuck E Cheese on Saturday. There isn't much else to do on a cold, winter day. They are a little bit too young to really enjoy it. We spent a few hours there, and called it a day! Here's the best pic of the four together.

2009-01-09T10:53:00.000-08:00