The NICU can be a depressing place to spend a lot of time in. I can't even tell you how many babies were in there. The NICU is broke down into clusters. If I'm remembering right there was 12 clusters. Each cluster held between 6-10 babies. At any given time each cluster was full.
Lilyana started in cluster 2. I believe there were 5 other babies in there with her. With the amount of time I spend in there, it's hard to not notice what others are going through. It's also hard not to compare your situation to others. There was a little boy there for maybe 3 days, before he went home. I'm not sure why he was there or how long but I remembering getting really depressed watching him get his car seat test. This meant he was going home. Don't get me wrong, I was happy that he was healthy and for his parents to take there baby home, but it's also hard to watch a baby leave and know yours has to stay. We watched this happen to every baby that Lily shared this cluster with. Some babies were there before her and others came after her and left shortly there after. I started to feel like she was never going to leave and it got depressing.
Her first few days, I was still in the hospital, which made life easy because I could go visit and stay as long as I wanted everyday. It was great in the middle of the night as well, I could just walk down the hall and visit. Once I got discharged things changed. I wasn't suppose to drive for 2 weeks. Bryan was home for the first week which was great.
When we went to visit for the first time since I was discharged, things started to get real. Her first Neonatalogist was great. I really liked her. She was honest without being brutal. She had mentioned that she wanted to order an MRI of Lily's head because her forehead was sloped. She didn't want to worry us to much, especially since Lily was our first. She told us that She wanted to make sure nothing else was going on considering the shape of her head. She decided to throw in that it could just be the way she was. Like I mentioned before in an earlier post, I already knew something was wrong but those few words gave Bryan so much hope. Lily just had this look to her that wasn't right. She looked like an under developed baby that was born way earlier then 35 weeks gestation.
The next few days were the same. We would get up every morning and go visit with her all day. She was still being fed by NG tube at this point. She was still on the IV and all her monitors as well. We would sit in fear while holding her. This was especially hard for me, considering she stopped breathing the first time I held her. We would stare at her monitor screen to make sure she was breathing. I don't even think I moved an inch while holding her in fear of hurting this tiny person. Within a few days she started photo therapy for her jaundice. She had severe jaundice and stayed under those lights for I believe 2 weeks. It felt like an eternity considering she stayed under those lights 23 hours a day. So we got to hold her for a total of an hour a day. We would just sit next to her incubator and touch her and stare at her. It wasn't enough though.
That following Thursday, which happened to be Thanksgiving, was not such a great day. If you have read my first post you know what happens here and I'm not going to go into detail, as it is too hard to write again. Lily had a new doctor at this point. Every week they were switched out. I didn't like this doctor at all. She was cold. She just told use Lilyana had Lissencephaly and here's a piece of paper with some info, like we knew what the hell she was talking about. This is when things became more real with her apnea, swallowing issues and such. She started on caffeine for her apnea the next week. It made her agitated big time. She was a different baby, and not in a good way. She had a hard time sleeping as well. Her apnea episodes didn't go away completely but they happened less often. She started oral feeds this week as well. It wasn't every feed, but one every 12 hours or so for the first few days. She had bradycardia's every time. Nobody could figure out why. Maybe she was just tired or wasn't getting the coordination to suck swallow breath down. I know all you other SN Mommas who's kids have swallowing issues know what I'm talking about. They brought in a speech therapist to evaluate her while she fed. She tried different nipples and nothing seemed to help to much. She did start to do well with a slow flow nipple. She also had a blood transfusion due to severe anemia. They did hold out on this hoping she would get better without it but after long it happened. Seeing that she was so tiny, it wasn't really that much blood but it was still scary. She handled it well. She is a strong little girl.
After about 2 weeks she was transferred to another cluster. This cluster was for babies doing really well, were stable and getting ready to go home very soon. This was an exciting thing! She still had her NG tube for about 2 days while in this cluster. She was getting more feeds orally and was handling them pretty well. She only had a Brady once a feed and it was never to serious. She loved to pull out that NG tube and once she did in this cluster they left it out seeing that she wasn't using it at all. This gave us so much hope. Don't get me wrong we knew she was going home soon and were terrified of the fact of feeding her at home with nobody around god forbid she stopped breathing! But all the same exciting. We got to bring her car seat in for her car seat test. This involves the baby sitting in the car seat for an hour with no breathing issues or anything else. While I was there it was feeding time. So I did the routine. Took her temperature, changed her diaper, then feed. Well we didn't make it to the feeding part because while I was changing her diaper, Bryan mentioned her belly looking huge and bloated. We mentioned it to the nurse and she agreed. Next thing I know she is having an X ray done on her belly and learning her belly was full of air.
At this point, Lily was getting breast milk and formula every other feed because of weight gain issues. She wasn't gaining enough on breast milk alone. They even tried "fortifying" it with something like cereal. She was taken off her feeds for I can't remember how long, I think it was till the next morning. She was moved to cluster 1. We were back to not going home anytime soon. They hooked her up to some kind of machine were her stomach could empty out. This was put down her throat. I didn't handle this well and one of the nurses noticed and asked to me to step away. I looked at her like she was crazy and stayed right by my baby. She was given an IV. I have to mentioned I loved her nurse at this point. She got Lily's IV in with the first try. Lily is a HARD stick and every nurse had issues. We had to leave shortly after this because the NICU was closing for shift change. The drive home was horrible. I didn't know what was going on with my baby. I called numerous times that night just to keep checking on her status. She was doing OK, just extremely hungry which made for a cranky girl. She started her feeds back up in the am but wasn't given breast milk just to see what would happen. She did well and was putting on weight, but she was no longer tolerating oral feeds well at all. She was getting about have her feds orally and the other half by NG tube. A few days later she had a swallow study done. This was to she what was going on by X ray while she was being feed. They took her right before the NICU opened so I didn't get to go. While she was away I was trained on how to use her apnea monitor that she would go home with. This was exciting in a way because I knew we were on the path to going home.
When I was done with this, Lily was back in her crib but then came the sad news. She was aspirating her feeds. This means that she was having a hard time coordinating breathing and swallowing. Her milk was going into her lungs. It wasn't a huge amount but enough to make it dangerous. Dangerous being it could lead to aspiration pneumonia. This word is not a nice word in the Liss world. Pneumonia can kill her quickly. This is what takes most Liss babies other then seizures. I was told that she could learn to swallow and maybe be able to feed orally in the next few months since they were sure if it was the Lissencephaly or the prematurity causing her swallowing issue. The doctor gave me the choice A) I learn how to insert the NG tube into Lily's nose, or B) she could have a G-tube placed into her belly. Looking back I should have went with the G-tube, but I didn't. I held out hope that she would swallow and didn't want to put her through surgery. So that afternoon my fave nurse showed me how to insert the tube. I thought getting a c-section was scary well this took the cake big time. I was so nervous I wouldn't do it correctly. I managed to get it in on the first try with no issues. The nurse praised me and said I was a natural. I don't believe I'm a natural but I was a mother who had to suck it up and do what I had to do. She started back on NG tube feeds with nothing by mouth at all.
The next few days went well considering everything else.We were even told we could set up a room-in. This is were the parents get to stay over night in a room with the baby so you can get use to using her feeding pump and apnea monitor on our own but have the nurses right down the hall if anything were to come up. I didn't sleep a wink that night. I was terrified. Lily was feed every 3 hours and I was pumping every three hours. So I would set up her pump wake up Bryan and head back to the NICU to pump. This was a long night. I was terrified I was doing everything wrong and turns out we were using her pump wrong. The guy that "trained" us on how to use it didn't explain everything. It took 5 nurses to figure it out. We even called the company and they were no help because they didn't understand what any of us were telling them the problem was. The problem was he showed us how to set up the dose she was to get but not the rate it was to be given at. At about 5:45 am the nurse came to Bring Lily back to the NICU for all her morning meds and things that needed to be done and we headed home because they were closing. We weren't really sure if she was going to be able to come home that Saturday morning or on Sunday. When we got home I went to bed. I crashed hard but not for long by the time 10 am rolled around they were calling saying she was being discharged. We were so excited and scare at the same time.I was so ready, I forgot her outfit I wanted her to wear. When we got there the nurses loaded us up with supplies formula, bottles ,NG tubes, even a stethoscope. Not the cheap plastic one, but a real one.
The ride home was scary. I always said I'm not gonna be the mom to sit in the back with my baby on the way home but I did. I was afraid she would stop breathing. She did great on the ride home, I think I was the one that didn't breath. I was glad to be home with my baby girl. But now the fun really began!
