New mom of a preemie

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.
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danielsmom
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Re: New mom of a preemie

Postby danielsmom » Fri Nov 05, 2010 09:11 am

ch3lsea, any update?

Wish I could just hug you... you sound just like me when Daniel was born. It's shocking, breath-taking, that sight... he was 1 pound and almost 1 ounce at 27 weeks. I couldn't believe a human could be that tiny and LIVE. I've seen bull frogs bigger. His skin was a roadmap and his chest moved in odd ways from the vent and I think his heart beating. That image is burned into my brain. I actually passed out just trying to take in the reality of him the first time I saw him. I was overjoyed (an understatement) that he was there, really, but I know... nothing can prepare you for that image. I kept wondering what we'd be doing in a month, two months, three... would he live? Would he have complications? Then you try to absorb and analyze everything that the doctors and nurses tell you. And yes, in an odd way, we feel guilty that our bodies don't work ideally, and you try not to be cynical when women pop out full term healthy babies without any prenatal care and complain about it. I did better when I finally settled into my "new normal" and focused on each day, not too much ahead. I wrote in a journal each day while I pumped. Sometimes that even helped to look back on to see if Daniel was showing a negative trend in something.

Our scariest moments included when Daniel fought a pneumonia infection, and recovered with antibiotics fully in a few weeks, showing major improvement after just a few days. He turned up with stage 2 retinopathy in his eyes which really scared me, but later it disappeared and he didn't need surgery. He had a bilateral inguinal hernia surgery right before he went home. We got so used to fighting the hurdles and staring at the monitors each day that it was a strange thing when the day came to unplug him from the monitor and take him home.

20 months later, he's perfect. He went from being below the growth charts to the 60th percentile. He has no vision, hearing, developmental, or other medical complications. He's had 2 stuffy noses since being home. Not even an ear infection. He's ahead in his speech with like 50 words and counting. It baffles me... really and truly, miracles happen.

I owe it 100% to God, though I think He gave me some tools to help my little man. The biggest are probably, mommy's milk (liquid gold for so many preemie systems), early physical therapy monitoring, Synagis vaccine for RSV (maybe that's why he's so healthy?), baby wearing, and my co-sleeper bassinet. The co-sleeper might have been more for my peace of mind than Daniel's benefit. :-) We had a few scary reflux nights early on, but he grew out of that later.

Hold that precious baby and know that things really can turn out to be all right. Anything is possible.
Miscarriage Feb 05 & Dec 07
Daniel born Feb 09 at 27w5d, 1 lb 1 oz/12 inches (severe IUGR) due to Severe Pre-E & HELLP. Now tall for age and no complications.
Diagnosed with MTHFR
Cornual Ectopic miscarriage Mar 11
Natalie born 6-5-12 at full term, 7 lb 11 oz & 21.5 inches, progesterone 2-8 weeks (for suspected luteal phase defect), lovenox 6-29 weeks, lda 0-36 weeks, folic.

ch3lsea
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Re : New mom of a preemie

Postby ch3lsea » Wed Oct 06, 2010 11:25 am

Kayleigh decided to extubate herself the other night (she's always hate that tube down her throat)...so the doctors decided to try her on the CPAP. She's been on it for 3 days so far and doing better each day. I heard her cry for the first time since she was born when they put the CPAP on her! Yesterday the nurse put her in her first outfit :)

jenmatt1
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Re : New mom of a preemie

Postby jenmatt1 » Fri Oct 01, 2010 10:58 am

glad surgery went well- hopefully it is all uphill from here

miamibunnie
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Re : New mom of a preemie

Postby miamibunnie » Thu Sep 30, 2010 10:37 pm

Glad surgery went well. She is a strong little girl.

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patty
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Re : New mom of a preemie

Postby patty » Thu Sep 30, 2010 12:16 am

Glad the surgery went well and she is proving to be such a fighter. Hang in there still praying for you and Kayleigh.

trish
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Re : New mom of a preemie

Postby trish » Thu Sep 30, 2010 11:43 am

Glad the surgery went well. Still thinking of you & your wee one!! (((HUGS)))

ch3lsea
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Re : New mom of a preemie

Postby ch3lsea » Wed Sep 29, 2010 11:40 pm

Thanks! The surgery went good...her nurse was very impressed how well she did, they didn't need to use any extra blood or medication on her. She was completely sedated when I left her tonight, a little scary seeing her SO still (she's usually VERY wiggly) but the nurse said she will slowly start coming out of it and hopefully they will be able to slowly lower her vent settings a little bit. So now we're just hoping for a speedy recovery and hopefully, with her PDA closed, she will start improving each day :) Thank you all for thinking about us during this time...means a lot to me :)

jenmatt1
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Re : New mom of a preemie

Postby jenmatt1 » Wed Sep 29, 2010 02:41 pm

It is completely normal for you to be nervous for something like this, especially after what you have been through- that's what moms are supposed to do. My mom once said to me that if you worry about your kids, you are likely doing your job right as a mom. I think from your posts you have already shown what a tremendous mom you are and how much you love her already. Praying that everything goes smoothly today- let us know and know our thoughts are with you.

ch3lsea
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Re : New mom of a preemie

Postby ch3lsea » Wed Sep 29, 2010 10:13 am

Thanks. She is getting surgery today to close her PDA...I'm nervous, but I know it's the best thing for her. Wish us luck!

aundapenner
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Re : New mom of a preemie

Postby aundapenner » Tue Sep 28, 2010 01:21 pm

(((hug))) prayers for both of you for strength and courage.

I think as moms we forget to give ourselves credit and tend to dismiss our emotions.

It is OK to feel afraid, worried, sad, angry, and in love with your daughter. Her birth came so much sooner than expected. It is a huge burden to deal with the comings and goings in the NICU, to see our little ones so helpless and feel so unneeded.

But trust me - you are needed. She needs you. And she loves you, with all of your fears and flaws and imperfections, your daughter loves you.

This board is an amazing source of strength and wisdom. And mostly, in my experience, is a wonderful resource of shoulders to lean on.

Thinking of you ...


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