Our time at home with Adeline was wonderful but very stressful. It wasn’t stressful due to Adeline’s health, but rather the fear of the unknown! Every parent is nervous when they first bring home a newborn, probably more so with a firstborn. But, when you have a medically complex child, the fear is the same as that for first-time parents.
When we got home with Adeline that Sunday, we were excited to beat the girl’s home from Sunday School! Even though they saw our vehicle in the driveway, they were happy to see us. We enjoyed lunch with them, and we all admired Adeline. After we enjoyed lunch, it was time to start putting things away, have Adeline nap, spend time with the girls, and of course, pump!
Our 16 days at home with Adeline flew by! We were trying to be extra cautious with Adeline. We were watching for all of these additional signs plus all the routine adjustments of a new baby. Every time Adeline moved, I would watch her and see if she was turning bluer, having more labored breathing, or if she was having discomfort. It is easy to convince yourself that more is going on than what really is.
Our time at home with Adeline looked like what one would expect.
I was tired all the time. When Adeline would get up at night, we would have to feed her, and I would have to pump. Since I had to track what Adeline was eating, it was important to me that I would be able to record the volume. Yes, you could log her eating by the amount of time she was breastfeeding. I am very much a Type-A personality, and I need facts to be able to see on paper what she was eating. For the first few days, we would both get up and feed her. Then, I would send Jeremy to bed, and I would stay up and pump.
That got old…FAST.
After about a week of that rotation, I decided we need to do something different. I couldn’t handle getting up for at least an hour, in the middle of the night, times two. I decided that when we got up, he could feed, and I would pump. Then, after a few days that got old. I needed something more straightforward, something I could do more long term. So, I decided I was only going to get up once in the night and pump. For Adeline’s first feeding in the night, I would get up and feed her and pump. Then, I would leave the second feeding to Jeremy and get some rest. Taking care of me was just as important!
Then, we had some of our additional cares for Adeline. We had to track and submit the volumes of milk she was eating. Then, we also had to track her weight, oxygen saturation and her heart rate once-a-day, around the same time. I will always remember the anxiety that circulated around these once-a-day tasks. Her oxygen saturations were staying consistent, which we liked. If she started falling too quickly, they were going to want to intervein. Luckily, they stayed between 89 to 92, which was a satisfactory range, for now.
The weight was the big stickler here. Congenital Heart Defect babies typically have a hard time with gaining and keeping on weight. If Adeline lost more than .03 kg in a three day stretch, we would also have to bring her in to the doctor sooner. This is the area where we were always borderline. Adeline would finally be putting on weight and then she would lose all of it. We were constantly on the rollercoaster of gaining and dropping.
The weight gaining saga got even worse when they put her on the diuretic, Lasix. Luckily, they did not put her on Lasix until a week before her heart surgery. I remember having a conversation with the nurse coordinator about if Adeline continued to drop in weight, they were going to have to do something. I didn’t know what something was, but I was sure it would involve a hospital stay, which I wasn’t ready for again!
We always knew she was going in for surgery, but obviously we didn’t want to speed the hospital stay up any faster than necessary. Every day, when we took her weight, we would pray that it was at least the same weight. Adeline was the same weight on surgery day as she had been on the day, we left the hospital. So much for her getting bigger!
It was very important to us that we got Adeline baptized before her surgery. We felt as though she would be ok, but you never know. Since we didn’t have much time at home before the surgery, we didn’t have a lot of choice regarding when we would have the baptism. To make it more difficult, one of the two Sunday’s we had to choose from was Palm Sunday, which also happens to be paired with Confirmation in our church. This pretty much only gave us one Sunday and we had less than a week to prepare. Looking back now, I am so thankful we decided to have her baptism earlier rather than later!
Our time home with Adeline also included doctor appointments. There is always doctor’s appointment with your primary doctor within a week or two after you leave the hospital with a newborn. We had to have this scheduled before we even left the NICU.
A few days after we had left the hospital, we had our first appointment with Adeline’s primary doctor. Nothing too excited happened at the appointment, thank goodness. They did the typical things such as her weight, oxygen saturations, length and talk about any concerns we had. At the time, we didn’t have any, we were just trying to enjoy our time home with Adeline.
Then, there were the appointments in Rochester, which also had to be made before we left the NICU. We had appointments two times in Rochester before Adeline’s surgery. The first time Adeline had an appointment in Rochester, I brought her myself. It was a pretty easy, she had a x-ray and an appointment with the cardiologist, which include a quick ECHO. During the cardiology appointment, they found that Adeline’s heart was looking a little enlarged and that is when they decided to start the Lasix. The compared her heart to a balloon, it could handle the stretch, but only for so long.
The next time we had appointments in Rochester, which was a week later, it was all our pre-op appointments. This required Adeline getting labs, x-rays, a pre-op, and meeting with the surgeon. As a parent, it was hard to watch Adeline get a stick for the lab work. I remember one of the lab techs telling me it probably hurt me more than it hurt her…I am not sure. Adeline also hated the x-ray, and just so you know, she still does. Luckily, it is a painless process, she just hates the fact that she must sit still.
The pre-op appointment and meeting with the surgeon were the most painless appointments. At the pre-op appointment they took Adeline’s weight and we talked all things surgery. What to expect regarding how long it would take, what to expect while Adeline was in surgery, and the eating protocol before surgery. This was nerve-wracking for me as well. How do you tell such a small child, yeah, um, you can’t eat after this time or else you can’t have surgery in the morning? Luckily, this was not a problem, nor has it ever been.
After we finished all the pre-op stuff, it was time to meet with the surgeon. The man is in high demand, and we waited for some time. Knowing what we do now, it was well worth the wait! Dr. Dearani told us about the PA Band surgery and what to expect. In a professional and kind way he explained how difficult of a surgery this would be. It is difficult to get the band the correct tightness, it is better to be too loose than too tight. Being too loose meant there could be another surgery to make it tighter. It was somewhat, but not really, a guessing game of how tight the band would be. But he also had a lot of experience, so it wasn’t his first rodeo.
As I have said before, this was all so new to us and it was so much to take in. You just grab what you can from the conversation and go with it. I remember at one-point Dr. Dearani talking about how familiar we would become with all the medical terms and it would all become second nature. I remember telling Jeremy he was nuts, but he was right!
Looking back at our time at home with Adeline, it just brings me back. We were just going in for a quick surgery and would be home before we knew it! Life would continue, I would go back to work, and we would probably have the next operation in about six months.