So I had my daughter at 26 weeks on 10-11-12.. shes about a week and 4 days old.. I had her at a hospital that hasn't delivered in 10 years!! but thankfully neonatal life flight was their before they broke the water.. when she arrived she was a tad bit cold. Shes been on a jet vent her settings are going down slowly,nitric is almost all the way off shes at .5 atm... they took the uvc line out and put a PIC line in today.. uva line is still in... shes gave us a lot of scares!! so hasn't the hospital that we are at needless to say a few nurses has gotten in trouble for their attempt to have us withdraw our daughter from life support...her docs werent happy at all with those nurses cause they were FAR from that convo with us.. Her kidneys had a slow start but they are finally starting to show some improvements, they also thought their was gonna be something wrong with the GI track but they did a xray today and it looked good thankfully she has been having her up days but i heard this whole ride is one huge roller coaster. she started out with a grade 4 bleed on the left and a grade 3 on the right eventually the grade 3 moved to a grade 4.. so she has a high chance of having a disability But i will love my daughter just as much if she did or didn't have a disability... Scares me that shes having really good days cause everyone keeps telling me the bad ones are gonna follow behind.. I found this website on google I Joined because i am a first time mother and a first time preemie mother at that! I am overly scared and just need support from people whom have been through this.. I figured I would give everyone some back ground info of my daughter seeing as how i am new to the forum! I also thank anyone and everyone whom takes time out to read this and to comment back on it.
first time mother with a 26 weeker
My DD was born at 27 weeks. She is my first and only and I totally understand what you mean about being scared. I was scared and overwhelmed and depressed and angry and etc etc etc. It is a roller coaster. My best advice? Focus on her, but don't forget to take care of yourself. Take it day by day. Find some nurses that you like and ask if they will be your primary (if your hospital does that). Ask the doctors all sorts of questions and write down the answers. Keep a journal. Find someone to talk to, a nurse, a chaplain, a friend.
We spent 75 days in the NICU. We had ups and downs. We were grateful for the good days and we were right there with her battling through the bad days. Life in the NICU is never easy, but it does get easier. My DD is currently sitting next to me as an almost 3 year old sucking her thumb and asking me for toast
Hang in there Momma and keep us posted.
Her PDA finally closed itself But her brain bleed has gotten slightly worse we talked to a neurologist surgeon today about it.. and also talked about whats gonna happen if her skull expands to much to fast. They are gonna keep daily measurements of her skull and keep feeling around it to make sure the soft spots haven't became hard. Also took some cultures because her white blood cell count has amped up again for some reasons and shes keep forgetting to breath a little but i heard her that young is typically normal to forget sometimes.. so they think she may have a infection some where. She was on a cpap with no rate just continuous air flow but now shes on a different cpap with a rate of 10 and a pep of 6 cause they think she is getting a little tired of doing all the work. so we took a few steps forward but a little back. shes only two weeks old and this roller coaster ride is just so frustrating and heart breaking. she is on a feeding tube now with no retaining fluid remaining in her stomach after each feeding so thats atleast going good.
you're very welcome, they started her on antibiotics today cause her hemoglobin was 9.5 and her platelet count was down. They are thinking infection somewhere.Is it true that all preemies go through these stages especially the forgetting to breath and dropping their heart rate stage? Cause that just really scares me..
Our daughter was on monitors for her heart rate and breathing until the day before she left the hospital, at 80 days old. So essentially once the problem of not breathing goes away they are ready to go home- you will get used to lots of alarms through your whole stay. It's a long slow process, except when it moves fast and is scary, but it does end...