NICU series part 1

Shortly after we were home with Lua, I thought how it would be such a good idea for someone to write a book on all the nicu stories and being in the nicu. It is a life you cannot comprehend unless you are living in it! The NICU is such a stressful, scary, some times joyous place and you would not believe all the up's and down's there are when you are there. I read a lot of books about how to cope or how to live the NICU life, and I am sure there are books out there about NICU stories, but I was thinking if there were limited books about it I should write what we saw. I don't think I'll ever have time to write a book, or even be able to write a book, yet I still wanted to write down some of the stories we saw go by, especially before all the details leave my memory. They will all be with different names and some details changed a bit since I don't really have permission to write about everyone since I haven't seen them in a long time!
Part one, I will start with the story I know the best, and the one everyone who has read Lua's caring bridge and this blog know the most about, but there may be some things that were never mentioned. Forgive me if any information gets repeated!

Lua. Part 1

If you haven't read her birth story on caring bridge, you can read it here, I won't cover everything I did when I first wrote the story.
http://www.caringbridge.org/visit/luasouza/journal/view/id/53420714a589b4d332437e4d

Lua's labor was not what I expected, I truly believed I would go late with her like I did with May. Surprisingly, though, I was 2 weeks early going into labor. My contractions started around 3 am friday morning, nothing serious and I figured it was indigestion or braxton hicks but as the day went on they got stronger and all the nurses at the hospital were positive we would have a baby on friday evening. She wasn't able to push herself down, and I wasn't getting to 10cm but after a little bit of time on pitocin, waters broke and she was heading her way down! My water seemed to break 2 times and another gush of water out slid Lua landing right on the bed. That was the only second I saw her, this white, gray, blue, jumble of a baby laying on the table before they swept her away. They worked on her and worked on her and worked on her, I thought she was just having some breathing problems and had inhaled too much fluids. No one was really saying everything that was going on, I think because no one really knew what was going on. I had no idea until months later that her heart had slowed waay down and she ended up getting a shot to jump start it. After they were able to get her intubated, my husband had taken a picture of her and that was the only thing I saw of her until 6 hours later when I went to the NICU. My husband told me, something looks weird right? I didn't know, it was a picture, she just came out of the womb, babies always look a little like a mess? Besides the fact that she was very purple and blue and white. I haven't slept since 3am friday morning and she was born saturday at 5:21 am (or something like that) I was exhausted. My husband left to go be with Lua and I had to stay at the hospital. I truly thought there wasn't very much wrong with her, I really thought that her lungs might need a little help because she was 2 weeks early and we may need to be in the NICU for a couple days, but the doctor who delivered her did come and talk to me and tell me he jaw was very small, and very stiff, and if I needed to talk to him to call him any time. I still didn't think things could be that bad, but I didn't see anything that they did with her after they took her to the table.
I was was there at the hospital with my sister, and I was getting things arranged for when I could be discharged. I had just gotten her birth certificate, and we had talked about naming her Lua M Souza, and as I was filling out the birth certificate I got a call from my husband. The doctor at the childrens hospital told him some updates on Lua. She said she had skeletal dysplasia. she was clubbed foot, had a cleft palate, one of her ribs were missing, on the other side she had two fused together. Her one foot was dead and detached and not working. Her organs weren't working, they weren't sure how much damaged was done to her brain, and her heart might not be working either. The doctor told my husband that they will be thinking of taking her off support with in 24 hours and I needed to get there as soon as possible.
I haven't slept in 24 hours, I haven't gotten to see my baby, I just went through labor!!! And now I hear that my baby isn't going to live. I felt like I was hyperventilating. I looked at her name and I knew we couldn't just do Lua M, she had to have something more, so the best I could come up with was Lua March. I felt like it worked well because May Luzia Lua March. Anyway. I walked out to the nurse and told her I needed to be discharged now! My sister came back in and I told her what my husband had said and we needed to get going. So the nurse came in, made me get on a wheel chair and 6 hours after I gave birth, I was discharged from the hospital.
I was able to sleep on the hour drive to the first NIUC Lua went to, and it felt really great, even though I was dying inside. I was terrified of seeing her. They told me all these things that were wrong with her, and as stupid as this sounds (remember I haven't had much sleep yet!) I was so scared that, what if I wouldn't like what I was going to see? How would she look? will it scare me to look at her? I was so worried what would happen when I got there and if I could be a mother to this baby, who according to the doctors was going to pass away with in hours.
We finally got to the NICU, I don't remember much after this, but feeling like I was walking to my own death. Everything was in a fog, the halls, the different floors we went to, I don't even think I washed my hands the first time I went in. They only allowed 4 people at a time in this NICU and when I arrived my parents were already back by her. I briefly saw my husband before heading back to see her. I was so scared, my heart was pounding, you could probably see it through my shirt. I walked up to where she was in the incubator and the second I saw her, I melted for her! My heart hit the floor, my stomach too, I was stuck between trying to sob to pieces and being able to breathe. I couldn't catch my breath, and I couldn't believe that this little beauty was my baby! She was absolutely gorgeous, the prettiest thing I have seen since having May. She was a true angel, and when I saw her I knew there was nothing I wouldn't do to save her. I was NOT letting her go unless she gave up completely. I wish so badly I could have switched places with her right then and there, I wish I could have taken all of her pain and suffering. I was so in love with her, I couldn't even believe it. What was I so worried about?
Shortly after arriving the doctor brought my whole family to a room and told us the same thing my husband had told me while I was at the other hospital. At that moment, I hated that doctor. You can't stand there and tell me my baby is going to die and expect me to like you. I couldn't look at her, and I felt like it was her fault Lua was in the situation she was in. They did give us a room to be able to lay down in, so after the little informational meeting, I went in and slept for a couple of hours.
After waking up and I'm sure I had started pumping already, some of Lua's tests were coming back. Her ultra sound on her heart looked very good, she had a good strong heart. Her brain ultra sound also looked good and very unexciting so they even canceled the other tests they had to look at her brain. Her xrays came back and they located the 'missing rib' the other rib wasn't fused, they thought it was cracked but it wasn't even that. She did have a break in her arm, but her leg was not detached and dead, where she was delivered they took blood from her foot so that is why she was so black and blue there. Later we learned because of her condition of the arthrogryposis and underlying condition, her leg was so floppy because of the contractures and lack of muscle, but she still ended up moving both her leggies!!!
She also didnt have a cleft palate. She had a high palate but it wasn't cleft. All her organs started kicking in too and she gobbled down the breast milk and digested it fully right away. She was making a huge turn around. In fact her lungs were looking great, she was taken off the oscillator with in 24 hours after being put on it.
We needed to go home because we were not expecting to be staying in a NICU and all the problems that came up so on sunday night we went home to get stuff. That was the worst thing in the world to come back to a house that was all prepared for a baby, everything was still laying the way it was when I was laboring, food that I was able to keep down was still laying out, and we had no baby. It hurt so bad to come back to a house that was ready for a baby and have no baby there. I spent all night, pumping, crying, and looking up what could possibly be wrong with our baby. I came across a word called Arthrogryposis, and I thought, hmmm maybe??? the prognosis wasn't terrible, although there was still the statistic of 20%-30% of infants don't make it to one year old. It still seemed some what hopeful.
It was the next day that we were told she doesn't have skeletal dysplasia but her joints were contracted and they gave us the word arthrogryposis. My jaw dropped! I had told my dad and husband and sister about what I read with arthrogryposis and when the doctor said it, I just couldn't believe it. Anyway, she told us we would have to go to milwaukee because they have orthopedics and she will need surgeries for her joints and then she should start moving and things were starting to look up! The doctor was so impressed with Lua, she wanted to extubate her, but because of Lua needed to be looked at she decided to keep her intubated, but she felt pretty confident that Lua could breathe on her own, she was on such little support by this point. It seemed like our first doctor made a total turn around. She told us how Lua was really a miracle! And such a fighter!
Lua was 4 days old when we were transferred to what would become our home for the next 3 months. We went into this believing they had some good answers for us to help her get better quickly. We planned on staying down there for maybe a month! Ha! Lua was transferred by ambulance, me and my husband followed by car. When we got there, Lua had every specialist under the sun come look at her. Then we were brought in. It was like the first day all over again. The geneticist said she has a severe disease that we will be lucky if she lives to be 6 months old. They aren't sure what disease it is yet but we shouldn't even bother looking anything up online. My husband protested a little by telling them how much she has improved. The argued and said that she is only recovering from her birth trauma, but she will never recover from whatever disease it is that she has. She can't even move, she was in the worst situation ever.
We were moved into the Ronald house, where I cried, and cried. My husband was much more optimistic than I was. When we went back to the NICU, I had the best surprise waiting for me! The nurses were setting up for me to be able to hold my baby, for the first time ever! it had been 4 days!!!
I could have held her for forever!!! Except my husband wanted his turn. But it was the best experience in the world! She was so sweet, so adorable. Then later the genetics team returned to tell us the two diseases they were expecting her to have. Spinal muscular atrophy, or myotonic dystrophy. But again, don't go online and look anything up, but just expect her to live for maybe 6 months.
After the first worst day at the NICU, along with the best moment of my life, it was all about test after test after test for her trying to figure out what she had. The day came for her extubation as well... I couldn't watch! When the extubated her she wasn't able to breathe, but then the neonatologist propped up her tongue and she was doing it! she was able to breathe on her own for about an hour. But she wasn't getting better at it and she was also not getting any worse at it. She was a mystery, and keeping her tongue propped up wasn't secure enough to take her home. I should have mentioned earlier, that they have 3 requirements before a baby can leave. They have to be able to breathe on their own, eat on their own... and I think the last was to be gaining weight? She couldn't practice eating because she had the breathing tube in, and she couldn't get the breathing tube out until she can breathe on her own.
Unfortunately, after her failed extubation, we had a conversation about what to do next. She couldn't breathe on her own, all the other options were going out the window to make this possible for her, so we were given 2 options. We either get a trach put in and learn all the cares and do this the rest of her life, or we take everything out and let her go. Let her go. Let her suffocate... My husband was so mad, I knew if these were our two options it wasn't going to be to let her go, or else we would have already done that.

Part 2 coming soon.