Calling All Mom's of Micro Preemies

[maxs mom]

I hate to be exclusive, but I would really like to get to know some of you out there with micro preemies. I had a 25 weeker on 1/20/03 due to severe PE. He was IUGR weighing 1lb 3ozs. He had what I feel was a typical micro preemie NICU stay with 12 blood transfusions, 3 staph infections, intubated for 10 weeks (maybe a little long), CLD, endocriditis (not common at all), pulmunary stenosis (probaly not that common), jaundice, Stage 3 ROP (now resolved, yeah!) the list goes on.

Max is coming up on his first birthday and I feel we have challenges that not all other preemies have, but probably what a lot of other micro-preemies have. He is still small, his motor skills are delayed (just hitting 6 month milestones), and he HATES his bottle (ok with pureed foods though). On the positive side, he is health, his pulmonary stenosis has improved, he loves his naps and sleeping (always has) and he is an extremly good natured happy baby (all of the NICU nurses told us micro-preemies are very tempremental, so we brought him home and waited for him to change, but he never did [:D])

I would love to hear some of your stories and especially some of your challenges and how you managed through them.
Thanks!



Kara
Mom to Max, 25 weeker, 1/20/03

[aimeejane]

Kara, your experience sounds right on to me! Nicky (28 weeks, 1 lb 10oz) was 6-and-a-half months developmentally at his first birthday. Thankfully, getting into the state therapy programs 5 months later (MUCH too late - we should've started before he turned one!) helped him immensely in catching up.

Differences: He gave up baby foods at about 10 mos., after 6 months of chowing down on them...that's when he gave up sleeping through the night, too, which he didn't begin again until after his third birthday. The one long-term effect we think we're seeing is a possibility of ADHD. He'll be 4 in March, so it may be impossible to know for sure for awhile, but my instincts are pretty strong on this issue.

Hmm...how we managed through the challenges. One day at a time? I didn't know any differently, since he was my first child. However, I had one or two panic attacks during Kalen's pregnancy, since it's rather daunting from the front end. Sometimes I look back and wonder how we did do it without any long-lasting scars, but think we were given exactly what we could handle.

Gotta run...boy #2 is wanting some dinner! Take care!

Aimee - 28
Dh - 30
Ds Nicky - 3/24/00 (28 wks - eclampsia)
Ds Kalen - 7/10/03 (36 weeks - preeclampsia)

[bhargavidd]

Hi! My daughter, Karuna Sindhu, was born on December 15, 2003 at 25w6d. She weighed 1 pound 3 ounces and was 12 inches long. She is currently in NICU but is doing well! I look forward to interacting with you!

Bhargavi.

Mommy to Karuna Sindhu, born 1 pound 3 ounces at 25w6d.

[maxs mom]

Bhargavi,
Congratulations on your little girl! Hang in there. The NICU can be a harrowing experience, but try and take the good and forget the bad.

Please let me know if there is anything I can do to help. If you ever have even the slightest question, feel free to write here.

I also want to recommend a book to you. I got it later when Max was in the NICU and I wish I had it sooner. It's called "Preemies, The Essential Guide for Parents of Premature Babies". Order it on Amazon, it should arrive in 4 or 5 days.

Again, Congratulations and good luck! I am glad to hear Karuna is doing well!

Kara (33)
DH, John (35)
Max, 1/20/03, 25 wks, 534g. (IUGR), severe PE
http://www.babiesonline.com/babies/m/mightymax/

[angelical]

quote:

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Originally posted by Maxs Mom
I also want to recommend a book to you. I got it later when Max was in the NICU and I wish I had it sooner. It's called "Preemies, The Essential Guide for Parents of Premature Babies".

---

I agree! The NICU had a copy that they let us borrow. I read it from cover to cover.

Good luck to you all!

Sharel

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Sharel & Kevin
Aaron - 28 weeker
Born 5/2/02 due to preeclampsia & HELLP

Our miracle boy is doing great!!

[wenndii]

Hi My name is Wendy and Iam 10 weeks pregnant already Hypertensive bp on meds 156/104 very scared this is my third child.
My first child Zac was born at 24 weeks went down to 1 lb 10 onces due to PE unaware until my second pregnancy. Zac is my miracle baby. He has mild Cerebal Palsey that effects the muscles on his right side. He is so brillant and we are so fortunate. Please pray for me Iam very scared this time . With blurred vision already and terrible headaches aswell as last week I went in with severe bleeding that no one can seem to give me any answers .I had great doctors in MI for the first two pregnancys but have since moved glad I found this forum thanx for listening my emotions are so wacked I just need somebody that understands ( my husband is still after twice is still clueless but tries)

[angelical]

Hi, Wendy. Welcome to the Preeclampsia Foundation. Congratulations on your miracle baby. We in the "Parents of Preemies" section really understand what that means!

I'm sure you will find lots of support and information from this site/forum. Be sure to read and post about any concerns you have.

Sharel

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Sharel & Kevin
Aaron - 28 weeker
Born 5/2/02 due to preeclampsia & HELLP

Our miracle boy is doing great!!

[teresa m]

Hi Everyone

My name is Teresa and our baby, Emma Rose, was born 9/25/02. She was a 25 weeker and her weight was 1 lb 1 1/2 oz and 11 1/2 inches long. (She went under a pound at one point) Emma was in the NICU for 117 days, on the vent for 7 weeks, 9 transfusions, 3 head US, infections, ROP-Stage 2, Zone 2, etc. Emma Rose is nearsited and needs to wear glasses, but I have a hard time keeping them on her.

Emma Rose is now 16 months old (12 1/2 months adjusted)and doing great. She is walking and making vowel sounds. She says Da-Da,
Na-Na, etc. She is still small (17 lbs).

My husband and I would love to have another child but I am too scared. The fear holds me back. After Emma Rose was born, I was tested for blood disorders and I found out I have Factor 5 and MTHFR.

I just wanted to say that I know exactly what you went through. I still do not think I am over what happen. I worry everyday about something.....RSV, Talking, Seeing, etc.

If you need to talk, I am here.



Teresa M
Mom to Emma Rose
Born 9/25/02 at 25 weeks
Weighing 1 lb 1 oz

[raetay]

Hi!

My baby, Ethan, was born at 28 weeks two years ago in May. I had pre-eclampsia and was hospitalized for five weeks prior to his birth. He ended up being on oxygen for his first year of life. He is doing pretty well now, but still weighs just 17 pounds. His weight and feeding issues seem to be our biggest struggles. I have an inner conflict about how grateful I am for his life and how much I wish he was a "normal" two-year-old.
I am unexpectedly pregnant again (while using birth control) and terrified. I cried for three days straight after I found out. I had hoped that I wouldn't get pre-e again, but after looking in this forum, I realize that my chances are good that I will. We have three older children (including Ethan) and I have no idea how we'll take care of them if I am hospitalized again. Sigh.
It's wonderful to find women out there who truly understand my daily struggles!

Rachel

[angelical]

Good luck to you, Rachel. Feel free to post anytime about your struggles and joys of preemie parenting.

My son was also born in May 02 at 28 weeks. [8)]

sharel

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Sharel O'Connell
Local coordinator for Pittsburgh area
'Parents of Preemies' co-moderator
Survivor of Preeclampsia, HELLP Syndome, & preemie parenting
Future adoptive mom

Aaron (28 weeker, 5/2/02)
Kevin - DH