My son was born in the National Naval Medical Center in Washington, DC on the fourth of February (Superbowl Sunday) by C-section at 34 weeks. I was stationed in Germany when we found out he had this condition and after a lot of paperwork, my doctor at Landstuhl Regional Medical Center had me sent to NNMC to deliver..
I went in around 9 in the morning because Azriel had not moved in almost 24 hours. Upon monitoring, they found that his heart beat was dropping dangerously during my contractions, and he was not recovering well. I was told it would be better to monitor him outside of the womb and they would be inducing me. They waited a few hours, gave me an epidural that did not reach my left side and had to be redone, and then decided a C-section would be best.
I was expecting not to be able to see my baby until after surgery, but when the surgeon we had met on a tour of the hospital came in to talk me, it was to ask if we wanted to let my little boy live or not.
Sometime during the birth process, the hole in my son’s stomach through which his intestines were protruding closed in on his bowel, cutting off circulation. The bowel itself died, and as a result, the surgeon could either remove his entire lower intestine creating severe short bowel syndrome or just let him die.
My husband and I were both horrified and immediately told him to go save our son and quit asking stupid questions.
After about an hour, I finally got to see Azriel. He was a little 4lb 6oz tube factory with a mop of wet, black hair that covered his whole head. He was beautiful to me and I didn’t even look at all the tubes or the raw-looking cut across my little baby’s abdomen. Me and my husband were both instantly in love.
After my short stay in the hospital, my husband and I “moved” into the hotel/barracks across from the hospital paying $30 a night waiting for paperwork for housing at our new assignment post. We carried all of the flowers and “It’s a Boy” balloons out of the maternity ward and were asked by an innocent passer-by “Oh, where is the baby?”
Walking across the street three and four times a day to watch our baby sleep were the highlights of our days. In talking with our baby’s surgeon, we decided to allow him to reconnect his bowel (which had been turned into an ostomy, basically opening out of a hole in his stomach) to his colon to see if anything would pass through. (Which went well, he pooped within days!)
Sitting down with specialists and surgeons also took up a lot of our time as we listened to our son’s options. Depending on how well he did, he would be considered for a small bowel transplant. We were told that since TPN would be his main source of nutrition for a long period of time, he would also be put on the list to receive a liver as well.
As the weeks went by, my son faced no real problems. He came off the respirator within 24 hours of birth. Maintaining a working central line in his arm or leg were difficult as he often pulled them out. We watched him grown bigger and stronger, passing 5 lbs and working his way on to 6. The breastmilk I pumped and froze tearfully, wondering if he would ever be able to drink it, began to be infused into his stomach through his G-tube, a small feeding device surgically placed in his stomach, and he hit a growth spurt that we were all glad to see.
After about 2 months, everyone (his GI specialists and pediatric surgeon and NICU staff) felt comfortable sending him home on TPN. My husband and I were to be trained on his home pumps and in the mixing of his TPN. Also, we were taught how to replace the dressing on his broviac (central line) and clean around his G-tube. A week before he was to be released to a half-way facility where we would be monitored as we cared for him prior to him returning home, we noticed he was a little less active and seemed very tired. We informed the nurse who said it was normal and not to worry. The next day we were met by all of his doctors, who informed us he had a fungal infection; a fungus had attached itself and was growing on the plastic on his broviac. Also, they had drained large amounts of fluid out of his stomach so they were no longer giving him breastmilk until they could do a study to see if his intestinal track was blocked some way.
This was our first setback. He was treated for the infection, and the nurses began suctioning his stomach with a syringe from his G-tube every 6 hours. After about 2 or 3 weeks, a nurse let it slip that he would be coming straight home, on the antibiotics. We were exstatic and were finally told by the doctor that we would be “rooming in” in the next few days.
For almost a week we stayed with Azriel in a hospital room. Every 6 hours we suctioned his little tummy and turned off his TPN to administer his antibiotic. The nurses came and changed out his TPN every 24 hours. On the last day, a nurse from the company who makes my son’s TPN pumps came and showed us how to program the TPN, Lipid, and medicine pumps. On the 17th of April me and my husband put our little 7lb miracle into the carseat that had been waiting for his homecoming for months and did what we had watched countless other families do-carry our baby down the hall and out of the hospital.
In a blur, a home nurse met us at our home with a huge box of medical supplies which she explained the use of. She watched us to make sure we knew how to change his TPN and then showed us how to add the vitamins to his TPN bag with needles. The first days were hard; Azriel had no sleep pattern from his stay in the NICU. He did not sleep at night. We were up with beeping pumps, we were up draining bile out of his stomach, and we were up with changing out his medicine, but mostly we were up with a crying baby. We got no sleep, and with both of us being active duty military, one of us had to report each morning at 0630. Life was very hard. We got frustrated.
On his first visit to his GI doctor at Walter Reed Army Medical Center, she told us that his G-tube was too small. She did not have another one in the size he needed, so she gave him one that protruded 4 or 5 inches out of the cavity in his stomach while we waited for the one that is flush with his skin to be delivered. He bled and leaked terribly. When we got home, we realized that we could not drain him out of this one, and Azriel’s little tummy was getting full. A call to the home nurse resulted in an ER visit. However, as we were getting him ready to go, my husband caught his broviac on the wheel of the bassinette and pulled it completely out of my son’s chest. In a panic, we packed our very calm, very quiet baby up and rushed him to the hospital.
Azriel stayed at Walter Reed for about a week and was then released. He was only home for a few days when he choked on his own spit while crying and stopped breathing. We performed CPR on him like we were taught in the NICU until the paramedics arrived and gave him oxygen. This resulted in another week-long stay and a swallow study which revealed that he could be fed orally as long as it was thickened with a special honey used to thicken baby formula so that babies do not swallow too fast and choke. FINALLY I was able to watch my son suck down some breastmilk from a bottle.
Azriel is presently 9lbs, 4 months old, and waiting from the comfort of his own home for organs. We will attempt the STEP procedure (hopefully) in the near future to try to avoid the transplant.
