Monday, September 28, 2009

Back in the hospital...

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.

Thursday, September 24, 2009

Happy Birthday, Malakai!

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!

Sunday, September 20, 2009

Big birthday celebration!

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!

Thursday, September 17, 2009

Trying to play catch up...

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'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!

Tuesday, September 8, 2009

Ah, poop in the tub!

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. 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?

Tuesday, September 1, 2009

Another trip to the ER

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!!