Days 7 and 8 were pretty uneventful, but still terribly hard to get through. The doctors’ plans for both days were to do nothing and wait. She was done with her course of antibiotics at least. On day 8 her nose cannula fell out of her nose and she desaturated again, they considered this her test off of oxygen and decided they would try again on Wednesday (3 days later) at the earliest. I needed my husband so bad at this point, it was nice that my mom was there, but it wasn’t the same as having my husband with me. That night my mom heard me crying in bed and asked what was wrong, I replied with “nothing,” but really at that point what wasn’t wrong? I just wanted to be home with my husband, healthy daughter, and dog, like we should have been for almost a week at this point. I don’t think anyone ever plans to have a child born with health problems, and it really puts motherhood to the test early. I knew being a mom would be hard, but I never thought I would deal with a situation like this, and definitely not this early on.
On the 9th day my mom left, when seeing her off I missed most of rounds (the nurse wasn’t smart enough to tell the doctor’s to go to the other families first). I was all on my own at that point. I went for lunch and to take a nap, when I got back the nurses were acting like something really bad was happening to Aliceana. They were talking to the doctor’s about the situation, but never did they update me on what was going on. After an hour of holding my sleeping daughter trying not to cry I finally talked to the good nurse (it was shift change) about what in the heck was going on. Apparently they heard a weird noise in her lungs, and had 3 doctors look at her. If she had any trouble at all during the night they’d have to move her back upstairs. I had to go back to the house, I couldn’t handle being in the NICU anymore. After a while I got my emotions together and called my husband with the news. I might have enjoyed a bottle of wine by myself that night, oh boy did I need it at that point.
The next day I got to the hospital expecting the worst and they were acting like nothing happened the previous night. Today my husband was coming back thank God, even if that meant his mom was bringing him to the hospital. I’m not a fan of her after a lot of things she’s done and said about me, but I was being the bigger person. At rounds I had to talk to the doctors and tell them what was happening the night before and what the other doctors were suggesting. Thanks to my advocating I got the doctors to start bringing in the specialists. They were going to start with another review of the ECHO and talk with the cardiologist, possibly a repeat ECHO and a visit with pulmonologists. If those come back inconclusive they would have the Ears Nose Throat team check her out. So we were back to waiting again, but at least they were getting specialists to take a look at her so we could figure out why she wasn’t getting better anymore. In a big hospital you have to do a lot of advocating for your child since there are so many doctors and they don’t always fill each other in. Often times the parents know more about their child’s case than some of the doctors.
On our 11th day in the NICU we were there when the pulmonologists came to see her. We were there when they came in. After reviewing X-rays and examining Aliceana they decide that they want to order a CT scan to see if she has a rare lung disease called NEHI. All day we were waiting to hear back from the pulmonologists after the CT scan. We were a complete mess. That day when I was using the restroom in the main lobby of the hospital when coming back from lunch I ran into my grandma in my bathroom. I normally wouldn’t have minded seeing her there, but it wasn’t a good day, and she came without even asking us. I was pretty upset that she was there, I just wanted to be with my little girl and find out what was wrong with her.
It was early the next day when we found out that she did have NEHI and would be coming home on oxygen, so we got to start the long discharge process. We didn’t know if she was going to come home that weekend or not, it was Thursday and we couldn’t get a hold of the oxygen company. We needed them to be at our house on Friday or we’d have to wait until Monday to get her home. We went through some paperwork, had to go through some CPR training, and some other things to get her discharge moving. I think the nurse we had that day was just as excited as we were, she was definitely one of my favorite nurses. We finally got a hold of the oxygen company at 7:00 PM and they said they would have someone at our house the following day.
Day 13 in the NICU and Aliceana was 2 weeks old. She was coming home! Even though she was full term they had us do a car seat test, I was nervous the whole time, I knew she’d do fine but I was still terrified of any setbacks. We also learned how to use the oxygen tanks and all of those fun things. The ride home wasn’t bad, Aliceana slept the whole way with me sitting next to her.
It’s so great to have her home, even if it means we have to deal with having her on oxygen. She’s 2 months old and we still have no clue when she’ll be able to be without the added oxygen. It’s a little bit of a pain in the butt, but not too bad. We also have to go back to Madison for visits at the Children’s Hospital to see the Pulmonologist and Cardiologist. We use it as an excuse to check out some of the great restaurants that Madison has to offer. It definitely makes the trip less annoying, especially since my husband and I are such foodies.
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| Aliceana the first week she was home |
Written by, Brittany, the geek behind the blog. I share lots of recipes, my thoughts on the latest tech gadgets, my favorite geeky games, and snippets of life as a Work-at-home mom.