DownSyn Forum

LaLouve · Posted: March 28 2011, 7:44 AM Post subject: Premature

I am now 33 weeks pregnant with my boy (confirmed DS at 16 weeks), and today I am so scared and worried.
I go to regular, almost weekly, ultra sounds at the hospital and the last couple of months they have registered a little high resistance in the umbilical cord. This is a sign of failing placenta. Today the numbers had increased even more. The numbers are not critical, but the doctors are not happy. It is very possible that they need to take him out before long. This worries me. I know that I am close to the "magical" 34 weeks when the chances are good he is "ready" to be in the outside world, but I can't help thinking that the DS and his heart condition (AVDS) might make it harder for him than for other babies. Besides, I am wondering if the chances of nursing him (I have asked about this before in this forum - I am to put it mildly very eager to nurse him) will fall to zero if he is born more than a month before due date. I was also told that they might need to do a c-section because with this resistance in the umbilical cord, he might not tolerate the contractions too well. I am not scared of much in this world, but c-section is one of them....

So, my question goes out there - have any of you experienced a failing placenta and/or any of the above mentioned scenarios (premature, c-section etc with DS)? Knowing nothing (nobody can of course know anything about something that has not yet happened) about this and talking to doctors who are afraid to say anything for sure (understandably), I am in sore need of hearing from somebody who has been through something like this.

Momof6 · Posted: March 28 2011, 8:21 AM Post subject:

I have no advice or experance, but will say prayers for you and your little one.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 19, Chelsea 16, Connor 14, Logan 9, Cody 6 & Austin 4 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy, 12/16/11 dx with seizure disorder, neurogentic bladder...Monti Cath 11/9/12
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

Googsmom · Posted: March 28 2011, 9:19 AM Post subject:

I had to have emergency c~section w/ Brook. She was breach, cord wrapped around her neck twice and then her foot in which was coming out pulling on the cord. Oh jeeze, this kid of mine. Just can't do it a little. Ohhh no, she has to always make a grand enterance LOL. I, too, was scared of the actual surgery. My Sis~in~Law came w/ me. (My Hubby is a chicken s*#t) It was quick and easy. Just make sure you set up some help when you get home b/c it is a little hard to move around Wink

_________________
Jennifer, Momma to The Brookster 4 yrs old

www.specialneedsinmolalla.blogspot.com
www.foundalongthejourneythroughholland.blogspot.com

lespring · Posted: March 28 2011, 2:22 PM Post subject:

I had a placental abruption at 16 weeks with Angela. We never knew she had DS. Her small size was 100% attributed to the fact the placenta was not functioning well. It finally STOPPED functioning at 35 weeks.

I'm sure the doctors have told you to do kick counts once a day. If they haven't start doing it. It was Angela's lack of movement that clued me into the fact it was time to get her OUT! She was delivered emergency c-section at 35 weeks. However, she only measured 30 weeks in development. That's when the placenta had started shutting down so her development didn't pass that point. So, while chronologically she was a 35 week premie, the counted her at 30 weeks due to her lack of physical development.

She stayed in the NICU for 6 weeks, and came home with a nasal feeding tube. Not a big deal, really. She thrived more once she came home than she did in the hospital.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

ghs73 · Posted: March 28 2011, 4:36 PM Post subject:

I had monthly ultrasounds, and at week 34, my little guy showed signs of significant Intra uterine growth retardation. (I didn't have an amnio, but blood work and ultrasounds showed a 1 in 9 risk for DS, but no heart issues).

I immediately went on hospital bed rest. Had twice-daily vitals and heartbeat checks. I was allowed up to use the bathroom only; showers were every other day.

I had an amnio a week later to determine little one's lung strength. Then, right after the results showed he would be OK, I had a C-section that afternoon (for me, it was a repeat C-section). Henry came out healthy and never had to spend a day in the NICU, though he was well-studied by a host of doctors.

Hope your little one is doing OK!

_________________
Gwen
Mom to 3 unique kids - one has Down syndrome, one was adopted, and one has really curly hair!

lespring · Posted: March 28 2011, 4:42 PM Post subject:

Gwen, your pregnancy sounds a lot like mine! When I had the abruption at 16 weeks I was in the hospital on Mag. Sulfate for 4 weeks to stop me from going into labor. Then I came home on 100% bedrest. No stairs allowed so our upstairs bedroom was moved to the living room, I was not allowed to walk more than 15 steps before needing to lay back down. That barely got me to the bathroom! LOL No cooking for the 4 other kids allowed, and not getting breakfast for them either. It was a very long 15 weeks on my back. I had just been taken off bedrest the day before Angela was delivered.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Aimee · Posted: March 28 2011, 7:01 PM Post subject:

Piper was a crash c-section at 32 weeks (we had a routine NST at the hospital and had a baby born less than 10 minutes later). I wasn't even going to have an epidural, so the c-section under general anesthesia was NOT in my plan (go figure). It was NOT fun, but keep in mind that ANYTHING is worth not losing the baby! Our experience is a little different because of the anesthesia part, but it is doable! Smile

We knew she had duodenal atresia, and we had been told that they would try to prevent labor as long as possible to get her as big as possible (our surgeon even said that LATE was best), so as they were running me upstairs on the stretcher, I was horrified. I just knew she was too little to handle it all! But, surprise, surprise, she showed us wrong...

We spent 7 weeks in the hospital, but she came home feeding on her own and, although teeny, doing super. And best of all- she DID eventually learn to breastfeed. It DID take a couple months (I think she was about three months old) for her to REALLY get the hang of it, but she nursed very, very well once she got going. Nursing a preemie is a tough road for most, and adding Ds doesn't make it any easier, but don't lose hope! Piper nursed until she was well over a year (when we decided to try having another, lol).

Preemies aren't "fun", but it is awesome to see your little, immature person grow INTO a "newborn". Scary? Yes. But can you handle it? ABSOLUTELY!

Good luck!

_________________
Aimee, Mom to Piper (5/2009) and Adalynn (5/2011)
http://aimeesbowlofcherries.blogspot.com

TheBradyBunch · Posted: March 29 2011, 12:00 AM Post subject:

Hello. Noah was born at 32 weeks. He spent only 10 days in the NICU and was 4lbs 11oz. I was on bedrest for 3 weeks before he was born in the hospital. My water broke at 29 weeks, up until that happened, we didn't even know something was wrong. Once they started doing ultrasounds they told me he could have DS, or be a dwarf, of the two types of dwarfism they said he could have had...one would have killed him. So, I know our situation is totally different...but it just goes to show life doesn't always go quite as we planned! I do wish though that I knew then what I know now. The nurses told me he couldn't breastfeed, and they only let me try once...took him off right away and said well he didn't get any. Anyway....support is here! Don't be scared (I know easier said than done!!) Your son will be just fine, even if he is born before the 34 week mark.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

LaLouve · Posted: March 29 2011, 4:14 AM Post subject:

Thank you all for your encouraging replies! I am very observant to his movements and so far, he is moving about regularly during the day (and even waking me up during the night). If I have not felt him for a while, I drink something cold or sweet and lie down, and usually he “answers” me shortly Smile

.
Lespring: My son is measuring about 32,5 weeks, but he has been a little behind the whole ride and he is gaining weight as he should (so far following his measurement curve). Did they measure the actual resistance in the umbilical cord with Angela?

It is reassuring to know from real people that it can actually work out fine (including the nursing, I am prepared to fight for that one). Having a baby, DS or not, is a ride into the unpredictable and uncontrollable – I guess sometimes one just have to let go and pray/hope for the best. Hard as it is. I am having a new ultrasound on Friday, and I am so hoping that the numbers have not increased….

Ditta · Posted: March 29 2011, 10:11 AM Post subject:

Hi,
My Teddy was born on 33 weeks 5 days (according to his files.) He had apgars of 9 and 10, nad he could breathe on his own from the start... He did amazing. He stayed in hospital for a month, but (according to his consultant who we've spoken to,) that was mostly because his birth parents were surprised by the DS diagnosis and needed time to decide what to do. They decided to relinquish him, and we adopted him when he was 6 months. Physically, he could have gone home from the start.

Do you have other children? I know of 2 mums of babies with DS who managed to breastfeed after WEEKS of trying (one of the babies was premature as well.) And several mums of non-DS babies as well...

If he's likely to be born on the early side, plus the DS diagnosis, plus a heart condition, I would start looking for a lactation consultant/breastfeeding supporter person now. That way you have everything in place when he's born. Think of WHY he might find it more difficult to bf:
1. more floppy - harder for him to keep a good latch and suck
2. More sleepy and easily tired - (this would be also a result of the heart condition)
3. Possibly finding it difficult to coordinate suck-swallow

All of these things would also be present in any premature baby without DS... And any good lactation consultant would be familiar with helping premies breastfeed.

You can also look into using a Supplemental Nursing System (Medela makes a good one, I've used it myself...) It's an annoying contraption if I say so myself *LOL* but after some getting used to it can be very very useful... And there are various tips and tricks to make it easier to use (send me a private message if you do decide to use one, I'll share more...) The great thing about the SNS is that while he would be getting most of his milk through the tube he would still be doing some sucking/stimulating on the breast, so it will make it easier for you to maintain your supply.

I can't help you with the c-section but I wish you and your little guy all the best...

_________________
Matilda (2005,) Philip (2007,) Teddy (DS, 2009) & Ramona (2012)
Blog: http://www.ab8matilda.blogspot.com

LaLouve · Posted: March 29 2011, 2:09 PM Post subject:

I have a 2 year old who I am still breastfeeding a little. I did have some minor starting problems, but nothing out of the ordinary, and the nursing experience with him has been fantastic.

There is actually a nursing "help unit" in the hospital where I am going to give birth, so I think help will be easily available.

Do any of you know whether a DS child is usually behind a normal child developement wise in the womb? I mean, they are often smaller, but does that mean less developed?

Tigger · Posted: April 01 2011, 6:22 PM Post subject:

Talitha had an AVSD and was born by c-section (definitely not my preferred option either but we got through it) at 34 weeks due to the umbilical cord not being efficient enough and her lack of growth. When she was born she was tiny but perfect - as in fully developed. She was in NICU for 3 weeks and I stayed in hospital with her then brought her home on NG tube feeds with me pumping breastmilk for her. Now I know about a system that probably would have enabled me to breast feed her but I wasn't able to then which really distressed me at the time.

Now she is so healthy and happy I wish I had been able to see into the future back then - I would have been much less stressed. Very Happy

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14