New 2 Group, Mom of 25 wkr 1/20/03, working on #2

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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Re : New 2 Group, Mom of 25 wkr 1/20/03, working on #2

Postby lisac » Tue Dec 30, 2003 11:31 am

Hi Kara,
I found the story of your little miracle baby quite inspiring. My little one, unfortunately, did not make it. Yet it's comforting to know that if this terrible disease does strike again, there is hope even at such an early stage.
Many women here are gearing up for (or going through) a subsequent pregnancy. You should also check out the Ask the Experienced section. You can also run a search on various topics. Have you had a panel of tests to determine if there are any underlying conditions? Have you had a consultation with a perinatologist?

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Re : New 2 Group, Mom of 25 wkr 1/20/03, working on #2

Postby sarab » Tue Dec 30, 2003 07:49 am

Hi Kara!

Like Sharel said, I'm sorry for the experience you had to go through to find us, but I'm so glad you are here! Your little Max had a pretty rough start, but it sounds like he's a tropper! I'm glad that he is doing so well.

After being on bedrest for two months, I delivered our daughter in June of this year. We figured that after all that had happened we would wait at least two years before even thinking about trying again. So just last week I suspected I was pregnant and we were so scared that I might be. When the pregnancy test came back negative, I was surprized to find myself disapointed! Even DH was kind of sad. So I think that we will start trying mush sooner, hopefully this next summer, if I can get my Dr. to clear it. He was very adament about not getting pregnant for awhile because I still have lingering high BP and kidney damage from the protein I was spilling.

As for treatments in a second pregnancy (aspirin, different diets, etc)., there is sadly NOTHING that has been conclusively proven to reduce your chances of "it" happening again. What works for some women does nothing for others. Basically, if you're going to get it, you're going to get it. Even bed rest just supresses it for awhile, for some women that's a few days, others can go a few months. Kind of scary, I know. My doctor told me that the ONLY thing he knows of for me to have "better luck" next time is to exercise regularly, to get in the best shape possible before trying again. That way if I do get pree again, at least my body might be able to handle it better or for longer. Makes sense, but I must admit that I ahve not been very good about exercising. [:I]

So for women in our situation, trying for a second is pretty scary. I wish you all the best and would suggest maybe consulting with a specialist. Hopefully we will be trying again soon, too, and I'll be right there with you!

Sara, 23
DH, Scott, 25
Maggie Lylas, 6/9/03, 29 weeks, severe pre-e

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Re : New 2 Group, Mom of 25 wkr 1/20/03, working on #2

Postby angelical » Tue Dec 30, 2003 05:40 am

Hi Kara.

Welcome to the Preeclampsia Foundation, and the preemies section. While it is unfortunate that you have had to join our ranks, we are also glad that you have found us.

It sounds like Max is doing incredibly well, especially considering he was so early!! Congratulations! I know it has been a difficult year for you. Best wishes for a healthy and happy 2004.

Last year, I saw a Ziggy cartoon, which I printed and have on the wall by my desk. He says "Hello, God, it's me, Ziggy. I just want you to know that this past year has been a pretty rough one! And while I know that you only give us as many trials and tribuations as you know we are able to handle... This coming year, it's okay with me if you don't have quite so much faith in me!" That really described how I felt! LOL And, to be honest, this past year has been incredible. When I see my little two-pounder walking and talking, I am just amazed and humbled by our blessings.

As for number two... I can't help you there. We are going to adopt. I personally don't ever want to THINK about experiencing all this again. Good luck to you if you decide to try again.


(PS, did you receive my reply to your email?)

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

Our miracle boy is doing great!!

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New 2 Group, Mom of 25 wkr 1/20/03, working on #2

Postby maxs mom » Mon Dec 29, 2003 09:24 pm

Hi all!
I just signed up after finding this wonderful website. I am so glad it exists. I am planning to get pregnant with #2 this summer, so decided I better get my act in gear and try to do everything I can to have as normal of a pregnancy as possible this time around. Reading your stories is really helpful.

As for my story, Max was born by emergency c at 25 weeks on 1/20/03 because I developed a severe case of pre-e. I started showing slight signs a week before, but nothing too alarming. Up to the time I delivered, I still didn't feel all that bad. Luckily the steroid shots were completed before my body started to slip into HELLP syndrome. When all of this happened, I knew very little about pre-e. Of course I had read about it in my baby books when I started swelling, but how was I supposed to know if I had high blood pressure or protein in my urine? If only the books had stated an important fact that I found out later, that swelling in your face is cause to get yourself to a Dr. ASAP, I would have been there at least 5 days earlier. Anyway, what is done is done. Thankfully, I had the shots, because with no warning, my doctor walked in on Monday morning and said it was time to deliver NOW. Unknown to me, the lab results were bad, so as soon as he saw them it was deliver immediately. Boy, did I feel like a train wreck. Max was delivered in 4 minutes flat, rushed to the NICU and intubated. He was a small 1lb 3 ozs., probably due to lack of nutrition from the high blood pressure, which must have been present for longer than I knew. He was in the hospital for just under 4 months. The biggest issue was lungs. He was intubated for 10 weeks, and even then the doctors didn't want to extubate, but I begged them because he never had a chance to even see if he could do it. Thankfully he flew, and kept doing so right until the time he went home. Besides CLD, he has pulmonary stenosis (heart murmur) that will need to be corrected through balloon valvoplasty when he gets older. He had stage 3 ROP, but it has regressed finally and his eye doctor said it appears he is slightly near sighted, but no need for glasses at this stage. He is a little developmentally delayed, but mostly due to the fact that his body is tight and certain positions are not so easy for him. He went home on oxygen, but got off after 4 months. He is still on an oximeter (recommended for his heart condition) but it will probably be pulled in February because his stenosis improved from discharge to last Drs visit. Also, he has not been sick once since he left the hospital, because I am very careful about his surroundings and visitors (or should I say lack of visitors, by choice). Honestly, I think my biggest challenge with him has been he hates to eat. Partly due to taking months to figure out he had a severe milk allergy and not reflux. He is on Neocate and breast milk now, and mommy eats NO dairy (boy this is tough, I love ice cream) He is OK with solids, but I tell you, a dream for most parents of full termers would be there child sleeping through the night early. We didn't want Max to sleep through the night as soon as he did, but I tell you, he likes to sleep more than eat, so he was sleeping through the night 8 weeks after he got home. He recently went down to just four feedings a day (3x’s with milk and solids) and he seems to be gaining OK, but he still only weighs 15+ lbs and his 1st birthday is just around the corner. I was hoping to get him to at least 17lbs. But I know what is most important is he is happy and healthy.

Sorry to ramble on for so long. What I would love to hear back is how other mommies dealt with pre-e during their 2nd pregnancy. I read a lot of aspirin therapy. Does anyone have experience with Dr. Brewers diet?

Thanks for listening to me go on!

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

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