Intro: I'm wandering to the preemie board...(longish)

brwneyedbuni · October 2011

I am a chronic lurker, seldom poster at the multiples board. It only now occurred to me to come here.

My babies were born Aug 7, 2011 at 31wks 5 days. My daughter weighed 4lbs 8oz, my son was 4lbs 10 oz. My son has been home for four weeks after a "typical" preemie four week stay in the NICU.Just growing. My daughter has been in the NICU for 58 days and counting. She has had severe reflux with chronic aspiration into her lungs. Last Tuesday she had a Nissen fundoplication, bronchoscopy, and Gtube placement. After surgery, she became septic (had a really bad infection) and was on the High frequency ventilator. She is now a week out and still on a conventional ventilator. She is improving everyday. She has stopped desating as low (into the 20s), and she is finally decreasing her oxygen requirements.

So, today is my due date. Did any of you have the "due date" blues? I can't help but wonder how things would have been if my kids would have been term. This past week has been hell, and I've felt like she will never come home. It seems so crazy to be in the NICU for 8wks and feel like you are starting the entire NICU stay over again! We have to work up the feeds again, ween the respiratory aid again, learn how to PO feed again.

I know that many of you guys probably have had tougher NICU stays, but I just needed to find someone that understands my frustrations. My friends and family are very supportive, but none of them have had preemies or sick kids like this.

Thanks for listening.

haziedaze · October 2011

I haven't reached this milestone yet, but wanted to send virtual (((HUGS))). What you're going through is so hard, esp. having one at home and one still very sick, I really can't imagine. I have blues about different milestones all the time. I was majorly grumpy on the day that was supposed to be the day of my shower, I'm sure my due date will bring up a lot of emotions as well. I'm glad your daughter is doing a little better and am hoping the rollercoaster chills out for you now. Just know you're doing the best you can and take it one day at a time!

JakesBride07 · October 2011

Due date blues are pretty common in the preemie world. I had a lot of mixed feelings about my due date. Sendings you big hugs.

I have b/g twins myself, (born @ 26 weeks). My DD had a Nissin Fundo and G-tube about a month after her due date, had an infection at her Nissin site and they had to reopen the site to drain it. She was miserable. She also spent 2 weeks after surgery on the vent. It was a long rode, so I totally know where you are coming from.

We've been home since July and it's really a lot easier/better then I thought it would be. OT works with DD weekly and we are getting to the point where she will tolerate (and do well) with cereal and drinking from a sippy cup. We do lots of oral stim everyday to keep her organinzed and prevent any aversion.

Good luck, and hang in there. If you have any questions or just need to vent you can PM me if you'd like.

brwneyedbuni · October 2011

Thanks guys. I appreciate the words of encouragement.

hunt2005 · October 2011

One thing the nurses ALWAYS told me was to remember that they may be multiples, but they are their own people first. The hardest part for me in the NICU, I think, was when one baby would be excelling so much (my boy came home at 35 weeks after a short 2 week stay), and another would be struggling. We didn't have anything close to your struggles, but I know how it feels to have one at home thriving and one still there that you're worried about.

I didn't necessarily have due date blues because I knew that they would have been early no matter what, but it's hard when I meet other people with the same due date because I wonder what one or two more days would have done.

Prayers that you've gone through the worst and are on the upside to getting them both home together again!!

OscarQ · October 2011

That stinks about the setback. I feel so bad for your baby and for you. Kevin was on high frequency for three weeks and then moved to a convential vent. Don't feel bad about feeling blue on your due date. I imagine you'd be a bit sunnier if the past week or so hadn't been hell but it was and you have every right to want to kick your due date in the teeth.

I hope that your daughter continues mending well and that she flies through relearning everything. Poor kiddo!

Mrs. Alice · October 2011

Big hugs to you! While my NICU experience wasn't particularly complicated, it was just long and waring. Those last few weeks dragged on and were really hard because it was so close to them coming home. I hope your little girl flies through all her milestones and joins you at home really soon.

brwneyedbuni · October 2011

Mrs. Alice, I have been reading your posts forever on the multiples board. I was in the hospital on bedrest when you delivered. Your boys are so cute!

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Intro: I'm wandering to the preemie board...(longish)

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