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#17171 - 05/10/08 01:12 AM Need help with a Birth Plan
Martika Offline
Member

Registered: 04/15/05
Posts: 78
Loc: Southern California
Hi all, I'm trying to make up a birth plan for TJ.

As you know I have EHK, and so does he, meaning a Cesarian Section.

What did you do to insure your baby got the best care possible.

BTW. Mothers with children of similar disorders.. I'd love to hear from you as well.

Cindie
_________________________
Mommy to TJ (EHK, T21, 8/14. VSD/ASD repair 11/4) Wife to WONDERFUL Husband and daddy Carlos, and Baby Mason Born 12/9/09

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#17172 - 05/16/08 12:35 AM Re: Need help with a Birth Plan
AngV3 Offline
Member

Registered: 12/06/06
Posts: 16
Loc: Sartell, MN
Hi Cindie-

I have EHK and my 3rd son has it also. I did get the amnio done at about 32 weeks and found out he would have it. I did not have to do anything different from my other two births, except I had to be in the OR room because it needed to be a sterile environment. I did not have to have a c-section and had no problems in delivery. My son did have an open tear across his chest which I assume came from sqeezing out of the birth canal, but he did great and it healed right up! He did stay in level 2 nursery to be in a sterile environment but he had absolutely no complications and got to come home with me when I was discharged on day 2! To plan I just met with the doctors and had my genetic derm speak to the OB/GYN about EHK, they had everything in my chart when I showed up and we were all prepared, but like I said - luckily all went very smooth and we had no problems. Best of luck to you!
_________________________
Angela

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#17173 - 05/16/08 04:34 AM Re: Need help with a Birth Plan
Martika Offline
Member

Registered: 04/15/05
Posts: 78
Loc: Southern California
Wow, I'd always assumed you shouldn't have a vaginal birth due to skin tears.

How long was he in the Level 2 nursery?

How long was he in the hospital?

Thanks
Cindie
_________________________
Mommy to TJ (EHK, T21, 8/14. VSD/ASD repair 11/4) Wife to WONDERFUL Husband and daddy Carlos, and Baby Mason Born 12/9/09

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#17174 - 05/16/08 03:34 PM Re: Need help with a Birth Plan
snackmom Offline
Member

Registered: 01/29/08
Posts: 39
Loc: mechanicsburg, PA, USA
Hi Cindie! Congratulations to you and your family- your excitement is so obvious in all of your posts! I think the joy might be contagious!

Of our 2 children, the litte one has EHK. We were completely aware of the odds, but never thought much of it. We never had an amnio done so we had no idea that he had EHK until he was born. I did not have a birth plan with either child and just "rolled with the punches". I had a vaginal birth and he seemed to do well through that experience. We knew immediately because he had small, but noticeable blisters on his torso. The big mistake was not opening our mouths faster and so the nurse had already started to rub him clean. It actually rubbed him raw! The following day he was admitted to the NICU because he had difficulty maintaining his temperature. He stayed there for 12 days, but the day we brought him home everything seemed to get so much better. The doctors also monitored his weight and he lost a lot which they attributed to the burning of more calories as the skin healed. So we had to fortify his formula. The only other major concern was his amount of pain. When he left the hospital he was still taking small doses of morphine, but we were able to wean him off once he was home and things were not so busy in his environment.

There are a lot of details that go along with the experience- most of which were emotionally draining. Should we do it again, I will definetly have an amnio just to be more prepared. I already have more knowledge to share with the hospital staff and the experience of caring for a little one with EHK. I am certain that you will do amazingly well considering your own first hand experience!

There are a few things we were very clear about to the hospital staff- absolutely no adhesives and no alcohol wipes. After a few days of research we found that the pampers sensitive wipes were okay- we actually still use them on him now (he is only a year old). The biggest frustration was the hospital pharmacy not being able to comprehend the amount of aquaphor we were going through and they never sent enough!

I hope this is of some help to you. I wish you all the best of luck i will watch for updates.

Take Care,
Christine

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#17175 - 05/16/08 11:04 PM Re: Need help with a Birth Plan
Martika Offline
Member

Registered: 04/15/05
Posts: 78
Loc: Southern California
Christine~ Thank you so much for your advice and experience.

Yes, I'm VERY excited about my little one. it's so funny because I don't even really dwell on the Down Syndrome DX anymore.... just about right after he's born and hoping there are no issues with hospital staff cleaning him after he's born.

I'm gonna basically threaten to sue if they try to wipe him clean and wind up wiping him raw.. Thankfully they've delt with at least 1 other EHK baby that i know of. maybe more.

And I'm gonna be awake during my csection and also have my hubby keep an eye on how they treat him to be sure they don't put any adhesive's on him. (i'm gonna use the allergy bracelet IDEA..)

Basically, today I just had my last visit with my normal OBGYN.. from now on I'll be seeing Loma Linda for my visits.
_________________________
Mommy to TJ (EHK, T21, 8/14. VSD/ASD repair 11/4) Wife to WONDERFUL Husband and daddy Carlos, and Baby Mason Born 12/9/09

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#17176 - 06/06/08 08:36 PM Re: Need help with a Birth Plan
AngV3 Offline
Member

Registered: 12/06/06
Posts: 16
Loc: Sartell, MN
Braden was only in the nursery for two days - he only stayed in the hospital as long as I did - He was born early sunday morning and we left the hospital together on Tuesday afternoon! He had absolutely no complications - I think if you are really involved and get a good group of Dr's and nurses that really listen to you, things will be fine!
_________________________
Angela

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#17177 - 06/18/08 02:29 AM Re: Need help with a Birth Plan
robinlynn9901 Offline
Member

Registered: 12/30/04
Posts: 40
Loc: Scotia, NY, USA
Cindie,

Im just reading all your posts and am happy to hear your spirits are so high. Your child is a blessing and though he will have trials, you will be a good mom and Karen will make a great Grandma.

The birth plan, for me, has been perfected. I am comfortable with a vaginal birth. There is no actual need for a c-section, but if that is what you are comfortable with, go with it. I deliver vaginally and then it is crutial that the Drs know how to care for your little one after.

With my first, they didnt't listen to me. When Austin came out, they wrapped him in gause from head to toe, like a burn victim. When my mom saw it- she ordered them to remove it and fast. What happened was, as you know, ehk skin grows fast. So what happened was his skin started to heal into the gause. When they removed it, it ripped off more skin than he was already missing and he developed sepsis (blood poisoning) from an infection. He then had trouble breathing and we were told he had a 20% chance of living. I was heartbroken. He survived with many loving prayers, but suffers from side effects of the events that went on that day.

With my second- they listened to me completely and Jacob healed well and came home quick & healthy.

The best for the baby is to be layed out in an incubator. no clothes or gause or bandages. Bactraban applied a couple times a day on the bigger sores and lotion too. Air is best till skin is dried up and not seeping anymore. It is important to use "telpha" pads to lay him on. They are the only non stick ones that have worked for us. You want to prevent anything from sticking to him. We got a bunch ordered and we cut them and made a sort of bed to lay on. Its changed 2-3 times a day. Blankets are ok, but not swaddling. Then you are keeping him too warm and harboring bacteria. We gently layed it on top of him if we felt he needed it. Both my boys also had morphin for the first couple days to help them relax. Jacob didnt respond well, so we just used lots of tylenol.

I know my post is long, but hopefully informative. Please feel free to email me anytime. I don't know all, but I know what ive been through and what has worked for us and what has not. I'm happy to share my experiences.

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