So, when she started projectile vomiting after every feed, screaming every time even a small amount of milk was put in her mouth, pooping blood, and acting like she was in pain every second of the day, we were all very, very concerned. She was taken off of oral feedings and from that point forward was taking all of her nutrients through IV. Immediately the doctors ordered x-rays to look for signs of NEC (Necrotizing Enterocolitis). For those of you fortunate to not know what NEC is, here is the gist of it:
"NEC involves infection and inflammation that causes destruction of the bowel (intestine) or part of the bowel. Although it affects only one in 2,000 to 4,000 births, or between 1% and 5% of neonatal intensive care unit (NICU) admissions, NEC is the most common and serious gastrointestinal disorder among hospitalized preterm infants. Severe cases of NEC may require removal of a segment of intestine. Sometimes after removal of diseased bowel, the healthy areas can be sewn back together. Other times, especially if the baby is very ill or there is spillage of stool in the abdomen, the surgeon will bring an area of the intestine or bowel to an opening on the abdomen (called an ostomy). Despite a significant mortality risk, long-term prognosis for infants undergoing NEC surgery is improving. "Surgical NEC" survivors are at-risk for complications including short-bowel syndrome, and neurodevelopmental disability."
As you can imagine, the more we read about NEC, the more terrified we became. We were thrilled when each and every x-ray came back negative. Yeah! No signs of NEC! We still don't know what's making her sick, but thank goodness that she doesn't have NEC!
At the same time it was determined that both Sadie and Linus had a congenital heart defect. Great.
In utero, all babies have a connection between the aorta and the pulmonary artery which allows oxygen-rich blood that should go to the body to recirculate through the lungs. But, in some babies this duct remains open and becomes a problem, PDA, which causes very inefficient blood circulation.
Luckily, there is medication to try to fix the open duct. This medication worked great on Linus who took it and after two doses had a closed duct and no further complications. Sadie, however, couldn't take any medication by mouth, but even worse is the effect this medication has on the intestines. The doctors tried one round and we all agreed that there was no way we were putting that medication back into her system.
So, we were horrified when she had to undergo heart surgery in her present condition. We were told this type of operation is very common in preemies, but they had to make a two inch incision in her back and deflate a lung to get at her heart. I don't know about you, but even if this surgery is routinely performed on every person in the northern hemisphere, it doesn't make me feel any better that my poor sick child is going to intentionally have her lung deflated and her heart tinkered with.
I think I was in such a state of shock that the surgery itself seemed to happen quickly. Before I knew it, Sadie was back in the NICU with a bandage on her back, but thankfully with a closed duct too.
Unfortunately, fixing her heart did not fix any of her eating issues. She continued to get sicker and sicker, while retaining so much water that she doubled her weight. She was constantly in pain and unhappy, couldn't eat anything, and had so much stuff pumped in through her IV that it had to be changed daily because of her collapsing veins. For over a month they performed x-rays multiple times a day looking for any sign of NEC since that seemed the only logical explanation, but every x-ray came back negative. She had multiple tests using barium pumped into both ends to see if there were any blockages (which came back inconclusive). Finally, the doctors decided not to put her through any more stress and pain, and decided to withhold any more tests or x-rays for awhile to see if she would improve. The x-ray tech came in to take one last picture,
and there, clear as day, was a huge gas bubble in her abdomen. A sure sign of severe NEC. We were given 50/50 odds for her survival.
Sadie was rushed by ambulance to Children's Hospital where they perform life-saving operations including exploratory surgery for NEC.
Enter Dr. Hilfiker.
After Brian and I ran into the NICU at Children's we met with the surgeon who would be performing one of her many surgeries. Dr. Hilfiker is a perfectionist and she was determined to figure out what was happening to Sadie. For 4 hours Brian and I sat in a small waiting room not knowing if Sadie was going to survive while our other sick child was in a different hospital miles away. This was it. This was NEC - our worst fear realized. And not only NEC, but severe NEC which had an even smaller chance of survival and a greater chance of complications throughout her life.
Finally, we saw a tiny little bundle being wheeled back into the NICU, and Dr. Hilfiker called us into a small conference room. At least she was alive! But now what? Apparently, the surgeon had found a big knotted mass of half-dead swollen bloody intestine when she opened up Sadie. She said it had clearly been there for a long time, probably since the beginning, and she wasn't sure why it was never picked up on any of the tests. She ended up removing a little over a foot of Sadie's intestine leaving both open ends sticking outside (an ostomy) so that her poor abdomen could heal.
I don't know how an ostomy is for an adult, but having a huge piece of sticky tape with a plastic bag covering Sadie's exposed intestines on such a little baby was even worse than it sounds. It leaked constantly, the sticky tape gave her a huge rash that started to peel and give her sores, and she screamed every time they had to change it (which was often). But this little fighter dealt with her ostomy for an entire month before she was well enough to undergo another surgery to stitch it back together. And only then was she allowed to eat by mouth. (Yes, for over 2 months she received all of her nutrition by IV. Not only that, for some time she had to keep a large tube running through her mouth into her stomach with a constant vacuum to suck up any stomach acid that would leak into her open intestines which gagged her constantly and occasionally ripped her stomach lining).
After her surgery to repair her intestine, Sadie had a short recovery in the NICU and was released home. Hurray! What a long road - only three and a half months old and she already had three serious surgeries, but that little fighter was as feisty as ever. When she got home she was quite a bit smaller than Linus, fluorescent yellow from her severe jaundice, and absolutely ravenous from not eating for almost 3 months. (Here she is trying to eat Linus' forehead:)
After many months and a ton of specialists and medication, we were able to control her jaundice, put a little weight back on her and stabilize her feedings. (That is a story in itself, but will have to wait until later). But this was not the last we were to see of Dr. Hilfiker.
When Sadie was 8 months old, her huge hernia she developed at her incision site had started to get in the way of her development. She wasn't able to sit up properly and no amount of intervention from physical therapy could help her. So, another appointment was made, and another surgery was scheduled to repair her abdomen.
By the next day, Sadie was trying to sit up. She was rolling around. She was frantically moving herself from place to place. She most definitely was not acting like she just had surgery the day before. Well, lo and behold, her hernia reappeared just days after her surgery. And it got bigger. And bigger.
After talking with Dr. Hilfiker, we agreed that Sadie needed to get a little bigger and give her abdomen some more time to heal. Her muscles were basically mush when the surgeon went in to repair her hernia the first time because of all of the trauma so there was no point going in again soon. We agreed to wait.
Then about a year later, Sadie went under the knife again for the last time.
And she came home happy as can be, and has been doing great ever since.
Today we had our last appointment with Dr. Hilfiker before we move. What do you say to someone who literally saved your child's life when the odds were not in their favor? Of course you say thanks, but only after repeated exclamations by both Sadie and Linus that "This is my tummy! This is Sadie's tummy! Do you want to see my tummy? Here's my tummy!"
We'll always have to watch Sadie to make sure she doesn't have any further complications from her surgeries. There's a 5% chance that she'll have to go under the knife again for her intestines at some point in her life, but we're taking it day by day. At this point I'm just thrilled that we have both of our children home with us and that they are doing so wonderfully. And a large part of that can be attributed to Dr. Hilfiker.
