I’m going to warn you, this post may be a little long because i’m just reminiscing and writing and I will update at the end.
You know that feeling of excitement when you first find out you’re pregnant? Excited to know what you’re having, excited to see what he/she will look like and excited for the future? I think those are all pretty normal thoughts. I had a gut feeling Jaxson was a boy before the ultrasound even told me, so I often found myself daydreaming about being a boy mom & what life would be like after he is born. I’d meet mom friends and talk about our life while we watched our babies play. I’d chase him around and watched fearfully as he climbed all over everything. I wondered what nights would be like as a newborn, and actually looked forward to being up at all hours of the night rocking him & feeding him. Little did I know, that wasn’t how motherhood would be for me. Even after finding out he had gastroschisis at 16 weeks, I still felt I was able to hold onto some hope because everything I read about the condition never really told me otherwise. “They’d be able to slowly put the intestines back in & close the abdominal wall…” I don’t remember ever hearing or seeing the words “Short Bowel Syndrome.” The doctors only told me that we couldn’t tell the severity of it until he was born and never elaborated on the worst case scenario. Nothing prepared me for what was about to come. Maybe that was my fault, I could have asked questions, but this was all still new to me and I was very overwhelmed.
Fast forward to the day Jaxson was born; I was a newly single mother starting this journey alone, with the exception of my family and my mother who has been my rock. I was full of emotion, but somehow remained calm. I was in full blown labor at 30 weeks and nothing could stop it. I was airlifted from one hospital to another, and going in for a c-section later that night. My adrenaline was rushing, I was very nervous & I don’t remember much of what happened in the operating room. I vaguely remember hearing him cry, then they brought him over to see me for a split second and he was taken away to under go his first surgery at just minutes old. I went to my recovery room and my mom went to see him in his recovery. She took pictures and that was the first time I saw my baby. I wasn’t able to physically see him until the next morning. We spent the first night of his brand new life separated.
The above photo is the first picture ever taken of Jaxson, and the first time I “saw” him.
Two days later I was discharged, and for the next 62 days, I would have to walk out of that hosptal every night empty handed; without my baby. For the first week of his life, I was only able to touch his tiny four pound body through the armholes of the incubator, so I’m sure you can imagine how ecstatic I was when I finally got to hold him. The world stopped spinning and all I could do was stare at him in awe. I remember being so scared, because he was so fragile and hooked up to all kinds of wires and tubes. Every time a monitor beeped or an alarm sounded, I’d always panic and look at the screen. For awhile he had what is called bradycardia- which is common in premature babies. They forget to breathe and their heart rate drops, but it corrects itself seconds later. Those took some getting use to, it was hard for the first few weeks to see his heart rate drop so low so frequently. A few weeks went by; my daily routine was going up to the hospital, listening to the doctors round, and spending time with Jaxson. I was extremely observant and asked questions frequently. I knew what our near future looked like- there was almost always one NICU milestone to look forward to getting over and getting him healthy enough to go home was all we were worried about at the time. I still had no idea what our distant future looked like. I knew that he would need a transplant, or different surgeries to try and utilize what small intestine he did have. I just didn’t know what our day to day life would be like. I didn’t know that i’d have to be extra careful and basically keep him in a bubble the first couple years of his life, because an ordinary cold for a healthy child meant a hospital admission for Jaxson. I didn’t know that we would have to rush to the ER every time he had a fever of 100.4 or greater, and I didn’t know how often that was actually going to happen. I didn’t know that I would be mixing and hooking up his TPN every night. Or that I would change his dressing every week. I didn’t know that his labs had to be closely monitored and drawn every week. I didn’t know he’d spend so many nights in the hospital and go through multiple medical procedures & surgeries in such a short period of time. I just went with the flow every day and because Jaxson was my first child, this all felt normal to me- I didn’t know motherhood any other way. To be honest, I don’t even think about what being his mother would have been like if he were healthy, I don’t like to dwell on the fact that my version of motherhood isn’t what I thought it would be- because he is who he is, and that has made me who I was suppose to be. I have learned that our life is spontaneous & to accept what I cannot change. I have learned how to be the best advocate for my child. And even though i’m more educated today than I was the day he was born, I still don’t know what to expect for our future, but I do know that I’m raising a warrior and he’s worth every second of this crazy life.
Okay now for some updates. Jaxsons had labs drawn Monday- The results showed his liver enzymes are high, so his GI doctor ordered a stat abdominal ultrasound, which can be done outpatient, to check for something called portal hypertension. Which is high blood pressure in the portal vein. The portal vein helps drain from the intestines to the liver. Most common causes are cirrhosis (liver failure)- which he has, so it won’t be surprising if the abdominal ultrasound does show that he has portal hypertension, though i’m not yet sure how it is treated. His lab results also showed that he is still anemic, and despite frequent transfusions, his red blood cell count continues to drop. His white blood cell count is also low. His hematologist wants to see him next week and check those counts again, if they continue to drop we will go forward with the bone marrow biopsy.
Our insurance continued to deny our claim to be seen at Lucile Packard for transplant because they are not a center of excellence like Childrens Pittsburgh is. So after some serious thought, I decided to stop trying to appeal it and I am now looking at Nebraska Med, because they are a center of excellence and also have an intestinal rehab center that we could possibly try. I’m not sure if Jaxson would qualify for it because of the extent of his condition, transplant may be the only option. Through research and talking to our doctors at Pittsburgh, I have found that with small bowel transplants, most of the time, rejection isn’t an issue of “if”, but “when.” So if possible, i’d like to explore the intestinal rehab option as well. We have only been evaluated in Pittsburgh, so it would be nice to get a second opinion from another transplant center. According to UNOS, there aren’t as many hospitals performing pediatric transplants, more specifically liver & intestine, in Nebraskas region & there aren’t nearly as many patients awaiting the same transplant as Jaxson- so that alone may give us a better chance at getting the organs he needs sooner than Pittsburgh. I talked to someone in Nebraska yesterday and had our doctor send a letter of medical necessity to our insurance, so the ball is already rolling. Now it’s just a waiting game again, and i’ll probably have to appeal this one as well. But I will do anything to make sure my baby gets the best care possible.
Thank you all for taking the time to read this, and for your continued thoughts and prayers. We appreciate it so much.
Jaxsons transplant fund: