This article is a continuation from Premature Distraction – Both Kids Get Sick

It was Saturday morning, and Caitlin was just six days old. It’s hard to explain the effect of being in the NICU on parents, especially if your child has problems. The hours seem like days and the minutes like hours. It always seems like your waiting for the other shoe to drop or the next bit of bad news.

This morning though, we actually got some good news. Our perky nurse told us that the doctor wanted to talk to us about the x-ray results they received from a few hours ago. Even though she seemed like it was going to be good news, Lori and I remained cautious and skeptical. We did notice that Caitlin’s color seemed better, and she wasn’t grimacing as much while sleeping.

A few minutes later, the doctor came over and asked us to follow her to the office, so we could look at the full series of x-rays in chronological order. At this point, it had been about 32 hours since the initial diagnosis of Necrotizing Enterocolitis and treatment began (stopped all feedings, in order to let her intestines rest).

She pulled up the first x-ray, and it showed a widespread presence of air pockets throughout her entire intestinal system. The, second x-ray looked pretty much the same. Then, she pulled up the x-ray from this morning. It was unbelievable. A day earlier it looked like a mass of black tubing, now it looked like clear white tubes with only a few spots of black air pockets remaining. It was a miracle, and the doctor said she was very pleasantly surprised. Normally, it takes at least 48 – 72 hours to see this kind of progress, she said.

It was the first bit of good news we had received since Caitlin was born.

The doctor told us that she wasn’t out of the woods yet; however, she did feel that the risk of perforation of the intestines (which produces an estimated 25% mortality rate) was probably over. Our little girl was going to be OK, and Lori and I could breathe a little easier now too.

The doctor did say that even though the major risk had subsided, there were still many other concerns that needed to be monitored and corrected during the healing process. Her jaundice levels needed to come down; she had developed a slight heart murmur; her white blood cell counts dropped significantly to fight off the infection; and, she was also becoming anemic.

Finally, the doctor said that Caitlin would need to continue taking antibiotics and remain on intravenous nutrition for at least 10 days. She recommended that Lori use the opportunity to stockpile breast milk and freeze it, as this would be more easily tolerated by Caitlin once feedings were reintroduced.

If everything went well, then Caitlin might be able to come home in a few weeks, after her intestines were healed, she was eating normally, gaining weight and free from any of the other issues that had arisen.

And so, we waited. And prayed. And waited. And prayed. And waited some more.

On Monday – Day 8 – I took Ty to the pediatrician’s office to check on his cough, which had worsened over the weekend. He didn’t have a temperature and his ears and chest seemed clear, so they said we’d have to “ride it out.” I hate when they say that, even if it is the right approach. Going to the doctor’s office and not getting a prescription is like going to Starbucks and not getting any coffee.

On Tuesday – Day 9 – The doctor finally said we could hold Cailtin again. It was so nice to snuggle with her! We could only hold her for an hour, but it was an awesome feeling.

On Wednesday – Day 10 – I got a call at 2:00 a.m. from the doctor saying that Caitlin’s PICC line (central catheter line) had punctured a vein and dumped her nutritional supply into her body cavity. He did an x-ray to make sure nothing got into the lungs or heart and, thankfully, it didn’t. It did cause some noticeable swelling that might take a few days to go down. The bad thing about this was that they had to remove the PICC line and put in a regular intravenous line, which meant Caitlin would have to go through the surgical procedure again to get another PICC line reinserted within the next day or so.

On Thursday – Day 11 – The doctor could not get the PICC line to insert properly in either of Caitlin’s arms, so on the third try they finally got it to work on her leg. Ty and I were both sick this day, so I stayed home with him and just drove Lori to-and-from the hospital.

On Sunday – Day 14 – Caitlin took her last dose of antibiotics, and she was reintroduced to minimal bottle feeding (3 cc’s) that evening. We finally got the majority of the finishing touches done on Caitlin’s room, which is pink with a capital P! My mom flew into town to help us with Ty for a few days and see Caitlin. It was really nice to have her here to give Lori’s parents a break, as well as provide an opportunity for Ty to get to know her better. She was great moral support for me and Lori too.

On Monday – Day 15 – as the feedings progressed, Caitlin started having trouble digesting her milk again. Instead dumping from her stomach into her intestines, it was just sitting in her stomach. The doctor decided to switch her over to a partially digested formula, which would be easier for her body to process. At this point in time, we wanted to see two things: 1) no residual formula in her belly after 3 hours of feeding, and 2) a ginormous poop that proved her intestines were working again. Again, we waited patiently.

On Tuesday – Day 16 – Caitlin’s bowels finally started working again, but she did require a suppository in order to get even a tiny bit of poop to come out. Her bilirubin count also came down enough to remove the phototheraphy blanket. One more item checked off her list of problems.

On Thursday – Day 18 – Caitlin was processing the majority of her milk with each feeding, so they decided to start mixing the formula with breast milk. Lori still wasn’t able to breast feed directly yet, as they needed to measure every bit of food intake she had. It was clear that her stomach and intestines were working now, but Lori and I were very nervous – this is about the time frame after starting to feed that the NEC first reared its head (no signs of it coming back yet though). My mom left to go back home this day – we were so thankful for her coming to help!

On Friday – Day 19 – Caitlin was fiesty this day, which was great because it seemed like “normal” baby behavior. I was holding her and started to feel something wet on my leg. At first I thought she peed on me, but then I realized it was blood. After further inspection, Lori and I noticed that she had snapped her PICC line in half and all of the nutritional stuff was seeping out onto me. They tried to repair the line, but no luck. They had to put a normal intravenous line back in her arm. Ty was still sick, and I was continuing to work on less than five hours of sleep each night.

On Sunday – Day 21 – The first real talk about Caitlin coming home happened. Lori didn’t want to get her hopes up, so she said that she would happy if it was in a week. I wanted it to be sooner, but I chose only to express that too Lori. The doctor said that we should bring in the car seat so the nurses could make sure it was OK, and then it would just come down to her feedings, weight gain levels and anemia. Caitlin’s new weight was six pounds six ounces, or one full pound more than at birth.

On Monday – Day 22 – Caitlin passed her car seat test, and the test results for the anemia came back favorable. The only problem was that she lost weight, so the doctors wanted to give her some more time to get back on track. Ty was still coughing like crazy, and overnight he threw up again on me and his bed. The pediatrician said we needed to “ride it out” though, so damned if we weren’t riding ourselves into delirium.

The waiting game was almost over, but no one actually said to us that the NEC was completely gone and would not return. So, I asked the question.

Would the NEC return? Would Caitlin gain weight again? When will Caitlin come home? …..

I’ll post more about our story soon. In the meantime, feel free to get caught-up by reading the Related Posts below and see pictures of our baby girl Caitlin Arielle.

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