After Adeline was born, was in the NICU and I was discharged from the hospital, the week in the NICU got much busier. I talked about the first half of the week here.
After I being discharged from the hospital, we went to go check-in at our hotel. We decided to stay very close to the hospital just in case something happened. Adeline was doing so well, but we were so nervous that she wasn’t. Again, so much of this stuff was foreign to us, and a lot of it is learning as you go.
After checking into our hotel, we headed back to the hospital to spend time with Adeline. She was still attached to so many lines and even had a feeding tube down her nose. I was petrified to hold her. With all of those lines, I was sure I would break something, and that wouldn’t be goo. I felt like a little kid in a glass shop.
For the rest of the day, I spend my time pumping, watching her, and holding her. It was amazing! I was so grateful that she was safe now that she was here. By Thursday, the doctors were discussing how well she was doing; they mentioned a potential discharge over the weekend. Already!!
Whoa, WHAT?! Shut the front door!!
The cardiologist came around later to see us and tell us they were very happy with the way things were looking. They were all thinking that Adeline should go home for a few weeks, get bigger and come back for the Pulmonary Artery Banding surgery. They were thinking about the timing for the surgery would be about Mid-April, which seemed like forever away.
I was ecstatic!
But that meant a lot had to be done in such a short time. When bringing home a heart baby, and I am sure all medically fragile babies, there are many more things to be on the lookout for. The nurse we had was so great and got on top of it. She started setting up our class for CPR as well as meeting with the cardiology nurse coordinator. Even though it didn’t seem like a ton to do, when you are recovering from giving birth as well as all the emotion of what is going on, it was a lot!
Thursday was over before we knew it, especially since our emotions were running high.
On Friday, we showed up at the hospital by 8:15ish so we could be there for rounds. Never miss the rounds, it is one of the best pieces of advice I can give you. The doctors didn’t really have any new information, just that things were looking good and they were hoping for a discharge over the weekend if Adeline was eating well.
Like many heart babies or any babies in the NICU, the learning to eat part is the WORST process of the all! It goes so slow. Prepare yourself.
That morning Adeline had gotten some lines removed (!!!), and we were able to give her the first bath. It was great in the NICU because they had a baby bath for us to take home, and she got to take a bath under a heat lamp! Adeline still hated every minute of it, but at least the setup was excellent. It was hard to give her the bath when she was so darn mad. But we got through it without breaking her.
After bath time, I had to pump, and it was time to head to our CPR class. We had to go to the clinic, which is a little away from the hospital. We had to catch a shuttle that goes between the hospitals, so we had to leave early to be there in plenty of time.
It was nice because the class was just Jeremy, me and the instructor. When we got there, we had the baby dummies to practice on. I remember while the lady was talking, I was having such a hard time listening. The first reason being was that this was all review for me. The second was that I kept asking myself if I would really need this stuff when I got home? I mean, I know my kid had a heart problem, but was her heart really going to stop beating? It was just getting to surreal for me. But, when the class came to an end, the instructor was happy with our progress, and we “passed.”
After our CPR class, it was time to head to meet with our cardiology nurse coordinator. We went to this appointment not really knowing what to expect. We meet with the coordinator and had some small talk to get to know her a little bit. After our small talk was over, it was time to get into the presentation of what our new world would look like. In all honesty, I hardly remembered the meeting, but there were a few things I had taken away from it.
Our coordinator went over a presentation with us about different things we would have to watch for with Adeline. With the heart anatomy Adeline has, her oxygen saturations were going to run lower than most children. During our NICU stay, Adeline’s saturations were running about 93-91, which is low for most “normal” kids. We talked about the importance of watching Adeline for signs that something was wrong, and we needed to contact them, such as her having more blue lips or fingers, her body temperature limits and weight loss limits and goals.
Again, this was all new to us, so we just tried to take it all in.
Our new schedule with Adeline would include some tasks that you do not normally have to do with a newborn. First, I had to download an App on my phone so I could record information in an area that it could be available to the doctors. Secondly, we had to get a small pulse oximeter machine so we could track Adeline’s oxygen saturation numbers. We would take it once a day and report it through the App along with her heart rate. Third, we would take her weight once day, around the same time, to make sure she wasn’t losing too much weight. Lastly, we would have to record how much milk volume Adeline had ate.
We took the scale, pulse oximeter machine, and handouts and headed out of the meeting.
I felt a little overwhelmed, nervous and ready to get home already.
We headed back to the NICU, eager, and excited about how we would soon head home. This stay wasn’t near as bad as we had anticipated! We finished up our Friday flying high; we would be going home on Saturday!
On Saturday morning we showed up before rounds to see how Adeline’s night was. She had done ok eating overnight, but she hadn’t gained any weight. The nurse wasn’t sure, but this kind of problem could put a snag in things! We didn’t like hearing this kind of news, but we tried to stay optimistic.
That morning at rounds, the doctors discussed Adeline not gaining weight and the concerns they had around it. They were not sure that it was the right time to send Adeline home, but they would talk about it further and give us an answer later that morning.
Why wouldn’t they let her go home!? From what we could see, she looked fine. The cardiologists had also told us that from their perspective, everything was also looking alright. I was panicking.
After rounds, we decided that to do our car seat trial. I am not sure how this works at most hospitals, but in our NICU, we had to do a 2-hour car seat trial to make sure that Adeline could handle being in a car seat for that amount of time. She passed with flying colors.
Now we really were ready to go home! Just waiting on the doctors to give us the ok.
Around lunch time, the doctors stopped by again. The doctor knelt by me and started telling us how they just didn’t feel confident enough to let Adeline go home. Adeline hadn’t lost any weight overnight, but she hadn’t gained any, which worried them. They just wanted another 24 hours to observe and make sure she was doing ok. They promised they would start rounds at Adeline the next day so we could get home if she was ready.
I WAS DEVASTATED.
Then, I started crying, and Jeremy wanted to go home for the night to see our other girls. I just couldn’t, though! I couldn’t leave my baby behind! It was shattering enough to have your hopes up so much and then for them to come crashing down.
I pulled myself together within an hour and tried to focus on Adeline. The rest of the day, I remember feeding her and always thinking, “Just eat little baby girl! We must get home! You can do this!” It is hard when you want your baby to eat, but they just won’t.
I was told, working on feeding is the worst part. IT IS. For many adults, it is not hard for us to overeat or make ourselves eat. Why can’t these babies just do it too?!
That night when we left the NICU, I was so worried about what the night would bring. Would Adeline eat enough? How much weight could she put on? Would we be able to go home the next day? How long would we still be here?
On Sunday morning when I showed up, I was anxious to hear what the nurse was going to tell us. Had Adeline had a good night? Did she eat the minimum amount needed? Was she up in weight? I was so scared of what her answers might be.
Our nurse for the day told us how Adeline had drunk more than the bare minimum amount the day before. Win!
Adeline had gained more than enough weigh in 24 hours, almost equivalent enough for two days. Win!
These were the things they had wanted from her, so they had to let her go home!! But, given the day before, I was nervous that they would change their mind or find another reason she shouldn’t go home.
Finally, the doctors came to do rounds. Just as they had promised, they started at Adeline. They discussed how her night was and that they were happy to report on how much weight she gained overnight.
Most importantly, they said she was ready for discharge! Yahoo!
I was so excited; I didn’t listen to another word that they said. Home. NOW, please?
Then, we played the waiting game. The other thing almost as brutal as the feeding process? Waiting to get discharged from the hospital. We had a new nurse that day, and she promised us that as soon as she had our paperwork, we would be gone. Time started ticking on, and then on more. It had been HOURS since they told us we were going home. We couldn’t find our nurse to ask, so we just continued to wait impatiently. FINALLY, several hours after the discharge papers had been writing up, the nurse was getting us ready to go.
We packed up our belongs and Adeline and got out of there as quick as we could!
The whole drive home was nerve-wracking. I kept checking her to be sure she was breathing! But we arrived home safely and just in time to surprise the girls.
Home at last!