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.
This was taken mid-April, he was basically skin and bones!
