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**3rd update 6/11- had our level II done today, please say some prayers for us

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HelenZ
So worth the wait :)

Member since 10/07

2862 total posts

Name:
Helen

**3rd update 6/11- had our level II done today, please say some prayers for us

So we had our Level II today and we got a bit of bad news. I thought everything was going well until the sono tech brought the head sono doctor in.....it turns out we have two problems. 1) the aorta valve is on the wrong side of the heart (the right side instead of the left) and 2) they didn't see a gall bladder. Normally they wouldn't be so concerned about not seeing the gall bladder (since our LO was not cooperating today anyway), but coupled with the heart problem, they are concerned it's a sign of a greater underlying issue. I am having an amnio done tomorrow, I really REALLY didn't want to have one since I know there's a very slight chance of miscarriage associated with them (and especially since I have 1 miscarriage behind me)....but, being faced with these issues, I feel like I need more information and/or the peace of mind (hopefully the latter). My doctor is also sending me to Columbia tomorrow to see a pediatric cardiologist, by doing a fetal echocardiogram they should be able to identify the exact heart defect and determine if it's repairable (and if it is I suppose heart surgery takes place right after delivery).

We should have preliminary results on the amnio by Friday, I hope! The gall bladder issue is secondary to the heart issue at this point, but I am hoping we don't have more than 1 issue going on or a major defect. The genetic testing results done at 12w & 16w were very good, 1 in 250,000 chance of downs or other trisomies.....so I am hoping the amnio is just cautionary considering what's going on.

Please keep me and LO in your prayers, I am keeping it together right now in front of DH, I cried in the bathroom at the doctor's office, but I don't want to show him how scared I am.

Here's our "little bean" who is already giving us grey hairs!

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**UPDATE 6/6
Thank you so much for all of your prayers thus far!! I had the amnio done at 9am today, went fine other than the uncomfortable pressure. They told me to have a glass of wine tonight to relax the uterus (it helps w/ cramping), but hopefully that will also help with my nerves! They still didn't see a gall bladder when they did the sono before the amnio, but they also drew extra fluid to do some GI tests in addition to genetic testing, so hopefully that gives us some answers....after the amnio was done I burst into tears, I finally just let go and the doctor consoled me and told me now's the time to let someone else be the strong one. DH was so good throughout the whole thing, he held my hand and said he wished he could switch places with me so I didn't have to go through all this.

As far as the heart issue, I couldn't get an appt with Columbia today, so my doctor sent me to a pediatric cardiologist at St. Francis Hospital. So I went there at 11am today, of course our LO wasn't cooperating much so it was hard to get a good glimpse at the heart and we were there a while, but he said that he doesn't necessarily see the aorta being on the wrong side, he sees the pulmonary artery and aorta separately, so that is a good thing!! The bad news is that he sees a hole in the heart between the two lower chambers (a VSD or ventricular septal defect). The hole could get bigger or smaller throughout my pregnancy and in the best case scenario it could heal on its own after birth. In the worst case scenario if it requires surgery it IS repairable, so that is the good news. The cardiologist said the best news is that nothing is missing, he said there are patients that are missing a chamber or missing the aorta entirely and in that case there's nothing you can do. So, I have to look on the bright side and realize plenty of people have it worse than us. Even if our LO will require surgery hopefully he or she can go on to lead a normal life otherwise.

We have to go to Northshore Manhasset tomorrow (we'd go today but they won't see us without the report from the fetal echocardiogram and apparently the cardiologist told my OB it won't be ready until end of day today or tomorrow morning! UGH!). So, perhaps we will have more answers tomorrow after the more in depth exam at Northshore.....and hopefully LO cooperates so they get a good clear view of the heart!!

Thanks again for all the prayers, I'll update everyone once I know more! Chat Icon

***2nd update, 6/8:
Today was another good news bad news sort of day. We basically spent the last 8 hours or so in hospitals. First we went to North Shore Manhasset at 8am for the detailed anatomy scan. The doctor there reconfirmed what she saw with the heart- the VSD/hole in the heart and that she didn't like that the aorta outflow looked thin. She also brought up a new concern, she saw a problem with the communication between the left and right side of the brain (an absent corpus callosum)....so she wants us to go for a fetal MRI of the brain in addition to another fetal echocardiogram. I think this was the first time anyone saw it b/c their sono images were so clear it was a better detailed view vs. the Level II at my OB's office.

So after leaving there midday we went to LIJ, had another fetal echocardiogram and met with Dr. Angela Romano at the Children's Heart Center (LOVED her). We spent almost 4 hours there, but it was worth it b/c they finally got some decent pictures of the heart. The cardiologist the other day was wrong (but to his credit, the baby cooperated a little bit more today), the baby's aorta does favor the right side- he or she has what's called a double outlet right ventricle and the VSD/hole is right in the same region. The hole is bigger than expected, so Dr. Romano's point of view is it's not a question of IF we need surgery, but when. The good news is both issues can be repaired at the same time- they can patch the hole and redirect the aorta's flow. If the baby is otherwise healthy, they would opt for surgery at 3-4 months, otherwise at birth if it's necessary. She recommends delivering at LIJ if I decide to go with their heart surgeons and stay with her practice. I feel like I am in good hands with Dr. Romano and I've heard good things about the heart surgeons at LIJ, so I most likely would decide to have it done there.

The one bit of good news we got today was the preliminary results from the Amnio are OKAY- NO chromosomal defects (i.e. downs etc). So thank GOD we finally got some form of good news. We had also met with a genetic counselor at NSUH Manhasset this morning, and my god was she ever debbie downer, I didn't care for her much, but then again I guess she's not there to deliver positive news. Hopefully we won't have to meet with her again now that the FISH test results of the Amnio indicate no chromosomal defects (although the doctor at NSUH DID say that even if everything seems normal chromosomally, things can be wrong structurally, I suppose that's what she was getting at with what she noticed with the brain issue). So that's next on our list, fetal MRI at LIJ on Monday at 6:30 AM!!!! Please say some prayers that we don't get any more bad news!!! I am hoping what she saw today was a fluke and the corpus callosum or whatever they're looking for magically appears!!! Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Thank you all for your thoughts for my little bean!! He or she is already proving to be a fighter!

***3RD UPDATE, 6/11:
We had the fetal MRI at 7AM today, and I had to wait ALL day for the results. I got the call with the diagnosis around 5 and I haven't stopped crying since. We do not have an absent corpus callosum, but what we DO have is an area of the cerebellum that is under formed- something called "dandy walker variant". From what I have read, the variant kind is not as severe as the "malformation" form of dandy walker, but regardless this has very wide ranging outcomes. I've read things about children who never walk, or just take years & years longer to develop basic motor skills, and then other more mild cases I read about seizures. I don't know what to think, this is something you don't know what card you're dealt until the baby is born. My doctor is concerned because we have several issues not just one isolated problem, and she said there are some syndromes that are not chromosomally linked (so despite the good amnio results something else could still be going on). I have to call a genetic counselor she recommended in the morning and once she reviews the MRI results in full she'll refer me to a pediatric neurologist. I am devastated and every time I feel the baby move I just cry more. DH is not home (we were waiting all day and I got the call about a half hour after he left for his softball game in Central Park), but I think he's heading right home after the game, I hope he gets here quickly I feel so alone....he doesn't see this as direly as I do, I wish I could think more positively right now, but I feel like I am all out of optimism. Please say some prayers for us, I just keep thinking why is this happening to me Chat Icon

here is some basic info on the diagnosis, I can't find much on this that is written in layman's terms....and in fact one of the first things that came up when I googled was "termination for medical reasons" Chat Icon

dandy walker syndrome

**6/12/12
Today was a tough day, the emotional toll is really hitting me. I was proactive and got an appointment with a neurosurgeon at 10am this morning even though I was waiting on a recommendation from my OB's office. We met with Dr. Mark Mittler at LIJ, he seems like a great doctor. He said he sees no reason to be overly concerned with the dandy walker variant issue by itself considering everything else in the brain is normal. However, coupled with the heart defect he said it would definitely seem some genetic disorder is going on. If there is a fluid accumulation at the back of the brain after birth, he can put in a shunt to correct it, but unfortunately brain issues in utero are a "wait & see" type of thing, you just don't know. The genetic counselor we met with is running additional tests, which might pinpoint some type of syndrome, we'll see. Unfortunately we won't have those results until next week most likely. In the meantime I called Columbia earlier today b/c I want to meet with their neurosurgeons in case they've had any experience w/ this rare issue....they said I'd have to meet with their prenatal group first and they'd refer me to them...so I'm waiting on a call back from them too. Waiting, and waiting, nothing else to do Chat Icon I think we'll have a follow up sono in 2 weeks to see if anything has changed. Chat Icon Chat Icon Chat Icon Chat Icon Thanks again to all of you for your thoughts & prayers!

**6/13/12
Met with a genetic counselor this morning. He was very good, did a lot of research on syndromes that include all 3 of the defects we have. Some of the possibilities- 3C syndrome, 4p- Wolf Hirschhorn, interstitial deletion of chromosome 5 long arm, and opitz oculo-genitolaryngeal (they all seem to have complicated names to match the complicated symptoms). We are waiting on microrae analysis results from the amnio, that is a more detailed look at the chromosomes. He'd also like us to have a 3D sonogram to see whether there are any facial or other disfigurements present (some of these syndromes include eyes very far apart, ears facing down, cleft lip etc.)....so if these are visualized it may be more possible to have a more definitive diagnosis of what syndrome we're dealing with. I also got a call back from Columbia, we are heading there on Tuesday the 19th to meet with their director of perinatology. She will re-run all the tests we've had on the same day (MRI and echocardiogram)...so at least it will save us repeat trips into the city hopefully. I just wish they could see us this week! Just trying to take one day at a time at this point. I will keep praying that something changes by the time we go to Columbia next week!! Chat Icon Chat Icon Chat Icon Chat Icon

Message edited 6/13/2012 3:22:40 PM.

Posted 6/5/12 7:01 PM
 
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Readyornot2under2
LIF Infant

Member since 5/12

214 total posts

Name:
Me

Re: had our level II done today, please say some prayers for us

I'm so sorry you are going thru this. I will be praying that everything is ok! Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

Posted 6/5/12 7:11 PM
 

mooshyboo
So Blessed!

Member since 11/07

6297 total posts

Name:
Christine

Re: had our level II done today, please say some prayers for us

I am sorrrry you are going threw this right now sweetie ~ I will be holding you in my thoughts and prayers!!!! Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

Posted 6/5/12 7:17 PM
 

Atherley
So in Love with my DS

Member since 1/11

1122 total posts

Name:

Re: had our level II done today, please say some prayers for us

I am so sorry you are going through this, keeping you and LO in my prayers Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

Posted 6/5/12 7:23 PM
 

FergieK
Loving my girls

Member since 7/09

2533 total posts

Name:
Fergie

Re: had our level II done today, please say some prayers for us

Sorry you Are going thru this but For my my first level 2 sono they told me heart was too far to the right and possible tear in the diaphragm. I went for a second opinion. LO is ok. I hope you get the same news tomorrow Chat Icon

Posted 6/5/12 7:23 PM
 

missfabulous
#mommyneedswine

Member since 6/09

10031 total posts

Name:
Colleen

Re: had our level II done today, please say some prayers for us

Sending you lots of prayers for your LO Chat Icon Chat Icon Chat Icon

For what its worth, my sister was born with her aorta on the wrong side and she's now sixteen years old and very healthy.

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Posted 6/5/12 7:26 PM
 

evenedan
Need a little sunshine

Member since 9/05

3843 total posts

Name:
D

Re: had our level II done today, please say some prayers for us

I'm so sorry you're going through this. My DH and I just said a prayer for your little bean. I hope you get some good news soon. Chat Icon

Posted 6/5/12 7:36 PM
 

wishing2012
My heart is full

Member since 3/12

1961 total posts

Name:

Re: had our level II done today, please say some prayers for us

Sending all my good thoughts and prayers to you and LO. Chat Icon Chat Icon

Posted 6/5/12 7:39 PM
 

ArmyOfBabies
Growing older but not up

Member since 7/07

4427 total posts

Name:
Jeri

Re: had our level II done today, please say some prayers for us

Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Everything turns out okay. I'm so sorry you have to go through thisChat Icon Chat Icon

Posted 6/5/12 7:48 PM
 

InShock
life is good

Member since 10/06

9258 total posts

Name:

Re: had our level II done today, please say some prayers for us

Sorry you have to deal with this. Lots and lots of prayers for you and your LO! Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

Posted 6/5/12 7:52 PM
 

LIRascal
drama. daily.

Member since 3/11

7287 total posts

Name:
Michelle

Re: had our level II done today, please say some prayers for us

Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Praying hard for you and your LO that this is just the doctors scaring the crap out of people once again. Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

Posted 6/5/12 7:56 PM
 

Lillies
Grateful for my babies!

Member since 2/12

4571 total posts

Name:
<3

Re: had our level II done today, please say some prayers for us

At my level II, we were told DS had enlarged areas of the brain with fluid and possible downs/brain problems.. we went to a high risk sonographer for better measurements the following week and nothing was wrong at all. I almost had a heart attack waiting those 7 days. I know how it must feel. Prayers for you guys and try and hang in there Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

Posted 6/5/12 7:57 PM
 

want2beamom
Love my boys soooo much!!!

Member since 8/06

10164 total posts

Name:
True love doesn't end with happily ever after...

Re: had our level II done today, please say some prayers for us

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Posted 6/5/12 7:58 PM
 

Linda1003
love my 2 boys

Member since 8/08

10923 total posts

Name:
Linda

Re: had our level II done today, please say some prayers for us

Oh sweetie I'm so sorry u r going thru this! Many prayers that everything turns out ok!!

Posted 6/5/12 8:02 PM
 

DiamondGirl
You are my I love you

Member since 7/09

18802 total posts

Name:
DiamondMama

Re: had our level II done today, please say some prayers for us

praying everything is okay Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

Posted 6/5/12 8:06 PM
 

Deenintendo
LIF Adolescent

Member since 6/11

847 total posts

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Re: had our level II done today, please say some prayers for us

I'm so sorry your going through this and you and your little bean are in my prayers...i just went through something similair i was told that my little girl could have a neural tube defect (spina bifida) but everythign turned out ok...many Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon to you and your dh and good luck tomorrow

Posted 6/5/12 8:11 PM
 

DreamsofBaby
2 under 2!

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Re: had our level II done today, please say some prayers for us

Lots pf prayers for you and your baby!! Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

Posted 6/5/12 8:13 PM
 

OhBoyorGirl
LIF Adult

Member since 2/12

1788 total posts

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Re: had our level II done today, please say some prayers for us

I am so so sorry to hear. I'm praying that your LO is healthy!!!! Best of luck to you tomorrow, you will be in my thoughts and prayers! Chat Icon

Posted 6/5/12 8:13 PM
 

jerseychick
LIF Adult

Member since 4/09

3923 total posts

Name:

Re: had our level II done today, please say some prayers for us

Many Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon for you and your little one!

Posted 6/5/12 8:21 PM
 

trnity44
I hope you stay beautiful baby

Member since 5/05

8356 total posts

Name:
Liz

Re: had our level II done today, please say some prayers for us

I'm so sorry to hear you are going through this. Sending good thoughts and vibes your way!

Posted 6/5/12 8:22 PM
 

janedoe
3 GIRLS!!!!

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Re: had our level II done today, please say some prayers for us

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Posted 6/5/12 8:22 PM
 

FLS2011
LIF Infant

Member since 8/11

282 total posts

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Re: had our level II done today, please say some prayers for us

Praying for you and your LO! Good luck tomorrow!

Posted 6/5/12 8:23 PM
 

popabubble
I need a clone

Member since 12/09

1143 total posts

Name:
Dianne

Re: had our level II done today, please say some prayers for us

Sending Chat Icon And Chat Icon Your way!

Posted 6/5/12 8:28 PM
 

gina409
TWINS!

Member since 12/09

27635 total posts

Name:
g

Re: had our level II done today, please say some prayers for us

sending lots of prayers and good thoughtsChat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

Posted 6/5/12 8:28 PM
 

readyornot2
LIF Adolescent

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Me

Re: had our level II done today, please say some prayers for us

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Posted 6/5/12 8:32 PM
 
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