Jaxson is a three year old, blonde haired blue eyed mama’s boy. He is so vivacious, and full of life.. And oh yeah let’s not forget incredibly stubborn-he gets that from his mama :). To know him is to love him. His short life hasn’t been an easy one by any means, and I wish being his mama was as simple as kissing away the booboos. But unfortunately it isn’t that easy. He has gone through 10+ surgeries to date, and has spent countless nights in the hospital. A diagnosis does not determine my love for him and I will be there every step of the way, he is my anchor. He has taught me how to be strong, patient, and so so loving. He is the most courageous person I know as he has gone through more in 3 years than most people have gone through in a lifetime, yet he still continues to laugh and smile.
Let me start from the beginning; Jaxson was born prematurely at 30 weeks on April 25th, 2013. He was taken via c section, and weighed 4 pounds 3 ounces. I don’t know if it was the medicine I was given for surgery, or if it was the adrenaline but everything in the operating room was a blur. The only thing I remember was briefly seeing him, then he was whisked off to surgery. Little did I know this was only the beginning of a tough journey….
When I was around 16 weeks pregnant, I went in for my anatomy scan. This was the in depth ultrasound that checked for any problems with baby and his organs. During the scan, my doctor informed me Jaxson had something called gastroschisis. I had never heard of this before, in fact it is such a rare complication that even when I googled it, nothing came up. Gastroschisis is a birth defect where the intestines are exposed in utero. In a regular pregnancy the intestines are exposed until about 12 weeks gestation when the abdominal wall closes, forming your belly button. Doctors aren’t sure why it happens, and they can’t tell the severity of it until the baby is born. In a less severe case, when the baby is born they are able to slowly put the intestines back in using a silo, which pushes the intestines in day by day and eventually are able to close the abdominal wall. In jaxsons case, all but 12 centimeters of his small intestine were dead, which lead to his first surgery at just minutes old. Surgeons had to cut away the dead intestine and close up his abdominal wall. Since he wasn’t left with very much of his small intestine, he now suffers from Short Bowel Syndrome and relies on TPN for nutrition. Your small intestine is where the food travels through & how your body gets the nutrients it needs. Since his bowel isn’t big enough to do that, he gets nutrition intravenously through TPN (total parenteral nutrition.)
In addition to the complications that come from his short bowel syndrome, he was also going through the complications of being born premature & spent his first 62 days of life in the NICU. In that month he battled weight loss/gain, heart rate issues, short term oxygen/breathing issues, temperature regulation issues- all of these are “normal” preemie problems and he soon overcame all of them & was able to come home. Before he left the NICU, he had another surgery to place a G-tube, this was placed in case he was unable to eat by mouth in the future. When he came home, he was limited to 5mls (a teaspoon) of breast milk every three hours. This was such a small amount, and was basically for comfort since he was unable to digest anything. Our hopes were to bump the amount up as he tolerated it to stimulate the intestine in hopes that eventually he could get a percentage of his nutrition through enteral feeds. He came home with a PICC line, which is just like a regular IV except it goes straight to a main artery and it is how his TPN was administered. Since he was on TPN, he got weekly labs drawn to check all of his levels and the PICC line made it so they wouldn’t have to poke him every time they drew labs. In August of 2013, he had the PICC line removed and a broviac placed. From my understanding, a broviac is essentially the same thing as a PICC, but the catheter is bigger & the broviac is a more long term IV. We needed to place the broviac because the PICC kept clotting everytime labs were drawn, so his weekly lab draws also turned into weekly ER visits to get the line working again. This problem was solved when the broviac was placed. There are risks with having a central line placed as well as being on TPN long term. The risks with the central line are infection, and he’s had a lot. Sometimes the infection is treated and cleared with antibiotics, other times the line needs to come out in order to clear the infection. So he’s had numerous surgeries to remove and replace infected lines, and also fix broken lines. The risk that comes with TPN is liver damage.
In March 2014, he had a surgery called a STEPP procedure to try and lengthen what bowel he had in hopes to take even more by mouth. And lessen (or prolong) his need for a transplant. At this time he was getting 26ml every Three hours. (26 mls is just 4 mls shy of being an ounce.) They were able to lengthen his Intestine from 12 centimeters to 52 centimeters, which still isn’t a lot and definitely not enough to absorb all the nutrients he needs in order to gain weight solely from food. So he was still on TPN for 24 hours a day. The staples they used during the STEPP procedure caused ulcers in his small bowel, which resulted in two GI bleeds.
Since he has liver damage that is only getting worse, in addition to his short bowel syndrome, his GI Doctor talked about placing him on the transplant list. We flew to Pittsburgh in February 2014 and he was inpatient at children’s hospital of Pittsburgh for one week while they performed tests to help them determine where to place him on the list. When they were done, they decided he needed to be placed as status IA, which basically means he was at the top of the list and needed the transplant asap. So, we came home and began the waiting game. On December 1st 2015, we got a call for transplant but unfortunately he was fighting a cold and was unable to go.