Join Date: Jan 2009
Location: Philadelphia, PA
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I'm new to this board, and also to the NICU. My daughter was born 10/21 due to my IC. I was admitted to the hospital on 10/12 for some bleeding, they put me on strict bedrest in trendellonberg (not comfy at all). I lasted 6 days like that until my water broke at 3am on the 20th. Amelia came at 8:34 am on the 21st. I was in labor from 5pm on the 20th until 8am when I was fully dilated. The nurses did not believe that i was in labor because my contractions weren't showing on the monitor- but i sure felt them!
I was 24 weeks & 3 days when Amelia arrived into this world, she weighed 1lb 7 oz and was 12 inches long. She came out flailing her arms and legs (which i didn't see because i was crying my heart out in fear). She also was breathing on her own, but they did put on her on the oscillator. She was on that for the first 2 days, then cpap for 13 days, then back to the oscillator for another 6 days, then she was back on the vent and was then transferred to a different hospital because she came down with NEC. I have never been so scared in my life- she looked HORRIBLE. She was as white as a piece of paper and had dark blue rings around her eyes, and her tummy was blue. After a couple days she started looking better, then she swelled up really bad, like twice her size, that was also scary, her eyes were basically swollen shut it was so bad.
After almost a month on antibiotics and numerous xrays to watch if she perforated, she got better on her own. They performed a barium enema 3 weeks ago and that went fine, right through. 2 weeks ago they did an upper GI and that didn’t go so well, she had a blockage somewhere so they wanted to schedule her for exploratory surgery. They scheduled her for Monday 1/5- but right before surgery, the opthamologist examined her eyes as she had been following her, and said that she needed laser surgery right away, she had Stage 3 ROP with plus disease. Yet another crazy/scary moment. So they rescheduled the bowel surgery until Friday. She had the ROP surgery on Wed, and turns out the ROP was very close to the center of vision and we were told she would have tunnel vision the rest of her life, I’m getting choked up now just thinking about it all. The exploratory surgery was more extensive than they had expected. Apparently she had perforated in 2 places and they hadn’t caught it. So they had to remove a good amount of her small intestine and we aren’t quite sure how she will do with feedings when they try in a week or so.
My fiancé just told me she now has an infection in her belly and a blood clot in her neck from her first broviak (they saw the clot 2 weeks ago but it was apparently dissipating on its own). They say its in the wall but getting flow around it. She is on antibiotics again for this new infection. My poor girl, I feel so helpless, I just want to hold her and tell her everything is going to be okay. Its been a week since I’ve been able to hold her and its killing me. With everything that’s happened I’ve only been able to hold her about maybe 10-15 times, not enough at all.
I know I’m not to blame for all of this, but I cant help but blame myself. I was playing softball while pregnant, it wasn’t very strenuous and only 1x/week, but still. I wasn’t able to give her breastmilk because pumping wasn’t working. The most I ever got out of one session was ½ an ounce and only that one fluke time. I tried fenugreek and reglan, but that only increased droplets. I feel like such a failure, I have wanted a baby so much, but was told it would be difficult or maybe even impossible because I have a condition called PCOS, but then Amelia came as a surprise, she is truly my miracle baby but I feel so guilty that she is going through all of this. I have always wanted 2 children, but I don’t want to put another baby through this because there is no guarantee that it wont happen again.
I just want my baby home and healthy.
Sorry for the novel, i dont vent often to people because i dont want them to feel awkward because they dont know what its like..