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Discussion Starter · #1 ·
Some of you may remember that our little girl has a giant omphalocele. There is a greatly increased chance (like 50%) that omphalocele babies have other issues. So she's being monitored very closely.

We had our 20w ultrasound, our 4th or 5th so far (I've lost track), and we have good news, bad news, and "we just don't know yet" news.

Good news: spine is okay, (there had been a question of scoliosis,) kidneys don't show any problems, brain is good. She increasing my meds for the nipple issue (Raynaud's Phenomenon of the Nipples,) so I am experiencing more relief there. She said there was plenty of room to increase, since the dose I've been on was "practically homeopathic" which made me laugh.

I don't have to lie on my left side. She said it's totally unnecessary. I can go get cortisone shots for my hips (bursitis), and it's fine for me to have me regular doc or a PT to get me a TENS unit for my Restless Legs Syndrome, and if that doesn't work, to see a neurologist.

"we just don't know yet" news: the heart. First, may I say that if you ever get to see (like on youtube or something) an echocardiogram, DO IT. It's so cool looking. The heart appeared to be functioning normally and formed okay, but it's still really really early, as I was only 20 weeks. However, her heart is torqued to the left, and tilted backwards. So she wants me to get a special pediatric echo at Children's later in the pregnancy.

Bad news: there was fluid in the abdomen around the bowel. This is called ascites. It's not hydrops, because it only is around the bowel, and not around the heart or under the skin or anywhere else. Apparently, if it occurs in 2 or more places, it's hydrops, but if it only occurs around the bowel, it's a whole different thing with whole different causes. It indicates a serious bowel problem that will have to be identified later, as she's so small still. But she did not sound encouraging. There is an increased chance of stillbirth, and even if she's born alive, the prognosis isn't wonderful, especially combined with the omphalocele.

I'm trying to grab on to the good news, and not think too hard about the bad. But it's not easy.
 

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Thinking good thoughts for you and your sweet girl! Will you be having a c-section, I'd read the link about it and said that they tend to do that sometimes.
 

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Discussion Starter · #4 ·
yes, I will be having a scheduled c/s. With a giant omphalocele, it just isn't safe to have a vaginal birth, as it could rupture the sac or damage the liver, which is out in the sac. Scheduling is the way to go, as we'll need to have at least 3 docs ready, plus the transport for her immediately to Children's, etc.
 

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Since you originally posted about your daughters' condition, you have been, and will continue to be, in my thoughts.
 

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Thanks for the update. You have been, and will be, in my thoughts. You have an amazing outlook, and I am sure it is very difficult to hear the "don't know" and "not good" news. Thankfully you are being monitored and you and your sweet girl are getting the best care you can be.

The echocardiogram would be amazing! I'll have to find one on youtube.

 

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You are an awesome mother to this baby already. She is very lucky to have you.
 

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I couldn't read this without posting. You and your family are in my thoughts and prayers!
 

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I'm glad to see an update. I had seen your story earlier, and I've noticed you posting in other areas (I mostly hang in the Aug DDC), and I am amazed and impressed by your positive outlook. I will continue to hope with you for the best possible outcome.
 

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Continuing to keep you in my thoughts. Thanks for the update! Is delivering at the children's hospital not an option? I know several families who have traveled to the children's hospital (both locally here and in other parts of the country) for a scheduled c-section with the doctors there, which let them avoid the need to transport the baby and insured that the mom would be able to see the baby sooner.
 

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Discussion Starter · #18 ·
No, this Children's Hospital only treats children. But the University hospital is just down the street, and they have a partnership. So I will deliver there, then they will let me go over to Children's every day, even before discharge, as long as I'm stable. And all the docs at Children's will keep me in the loop (my husband will be over there.) They have a bus that goes between Children's, the UW hospital, and one other member of the partnership, and it's mostly for the people who work there, but also for people in my situation.

It's not ideal, but the alternative is the one other hospital that has a high enough level NICU, which is a decent choice, but they just don't have the expertise and resources that Children's does.
 

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Hugs, mama. Thanks for updating us, I'm always wondering how things are going with you and baby.
It sounds like you have a great plan - I think you're in good hands at UWMC, and no question about Children's.
 

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DDCC - I am glad to see the update. I remember reading about this when you first posted of it. You and your family has been in my prayers since that time. I just want to add my voice to the support for you in this difficult situation.
 
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