first time mother with a 26 weeker

[icy101112]

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.

[katelove]

I'm sorry, I don't have any experience or advice to offer. I just wanted to say welcome to MDC and I hope all your precious little girl's days are good ones from now on.

[rnra]

Congratulations on the birth of your daughter!  I love her bright eyes in your profile picture!  I wish you the best!

[icy101112]

Thanks so much you two!! Also thanks on the compliment Haven't seen her eyes in a few days before this pic and when she started waking up off of the sedatives i just had to catch those beautiful dark eyes!

[pigirl]

Congratulations!  I second the thought that all her days be good days from now on.  What an introduction to parenthood!  I hope things get easier and she's home and thriving before you know it. 

[icy101112]

I wish to think all her days will be good days from now on but i know with preemies they go up and down sometimes. shes off the jet and nitric shes on a conventional vent and they introduced feeding today through a tube so hopefully it goes well in her little tummy.

[icy101112]

I wish to think all her days will be good days from now on but i know with preemies they go up and down sometimes. shes off the jet and nitric shes on a conventional vent and they introduced feeding today through a tube so hopefully it goes well in her little tummy.

[icy101112]

I wish to think all her days will be good days from now on but i know with preemies they go up and down sometimes. shes off the jet and nitric shes on a conventional vent and they introduced feeding today through a tube so hopefully it goes well in her little tummy.

[icy101112]

sorry for the triple post my computer did something weird and i guess it went in 3 times..

[CGsMom]

Icy, I hope things are still progressing and going well with your DD.

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.

[icy101112]

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.
 

[Adaline'sMama]

Congrats on your little bundle! She is beautiful. Hang in there 

[CGsMom]

No residuals in her tummy is great news! That means her little digestive system is doing what it supposed to do. She will get there.

Thanks for the update. Hugs and prayers from Texas.

[icy101112]

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..

[CGsMom]

Yes. It is very common. The bigger she gets the less it will happen. It is unnerving. Ask the nurses how you can help. We were encouraged to give our DD a gentle nudge or two if her Brady alarm sounded. But be sure to ask, every situation is different and there may be things going on with your DD that may make that a bad idea.

[Ratchet]

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...

[CGsMom]

Icy- I was just thinking of you and our little one. I hope you are both doing well.