Seeing it coming... what can I do to prepare?

[CorasMama]

(x-posted on special needs)

Had my 12 week ultrasound today. Baby has a Giant Omphalocele. This is what we call Not Good News. Best case scenario is multiple surgeries and probably ongoing problems. We'll be getting an amnio next month to determine what, if any, other genetic disorders are present (omphalocele usually occurs in conjunction with other problems.)

We've switched to high-risk OB care, obviously. When I get over the shock, I'm sure I'll process the loss of my crunchy pregnancy and birth care I've dreamed of.

But how I cope is information. I want to know it all, be prepared for every contingency (yes, I know this is something I'll have to just get over, but I'm not there yet), and have as much knowledge as I can cram into my brain.

So what I'd like is this:

What do I need to know about non-preemie NICU care?

How can I prepare?

What do you wish you knew first?

How much of a consideration, in choosing hospitals, is my ability to be at the same hospital (I'll need a c/s)? Does this answer change if it's possible we only get a few days with the baby?

I'm sure I'll be back with more questions as time goes on and as I get more information.

thanks in advance!



(oh, and ps., and I'm not going to say this very well, because I'm in shock, so please don't be offended. I am not currently looking for any alternative medicine treatments or such, or to have a conversation on how I manifested this problem or can manifest other problems or solutions through the LOA. No offense, it's just not what I need right now.)

[sbrinton]

I'm so sorry, that's a lot to face in a pregnancy. From what I've read, I hope you are able to get good information when you do more testing and that this will help you make wise decisions.

With a situation like that, I'd want to be at the hospital that specialized in the most high-risk pregnancies and babies. You might also need to consider what would be involved in a transfer. I know that where I am in Seattle, in a situation like this, the baby would probably be transfered to Children's Hospital. You could give birth at any of the local hospitals with a level III NICU and the ability to transfer.

If the diagnoses does not look good (i.e. baby will most likely only live hours or days), I would probably opt for the hospital that was the most comfortable for you. We recently watched friends go through a still birth at a hospital near us and the staff was incredibly compassionate and tender. They gave our friends lots of time, let them spend 3 days with the baby in the hospital before saying goodbye. Maybe you can speak with a social worker or nurse from the hospital ahead of time to do some care planning?

[CorasMama]

I'm in the Seattle area, too. We're going to have to choose between delivering at UW, transfering to Childrens, or delivering at Swedish, which has a level 4b nicu. Honestly, I think it'll depend on what the prognosis is, once they can do the anatomy scans, the amnio, and the fetal echo.

[DocsNemesis]

I'm another Seattle area mom.

I guess I'd have to talk to the doctors and try to find out which hospital was more well equipped to handle this particular condition, but my first gut instinct would be to deliver at the UW and have baby transferred to Children's. Its literally right down the street and I've dealt with Children's for years, they're wonderful. However, again, I'd have to check into it further...I just like Children's I'm probably biased since my ds has been going there since he was a year old! lol

If they know baby won't live long, I agree with the pp, pick the hospital that will make you most comfortable. I would take into consideration a few things and again, this will take some research and calling and talking to doctors, but...what do you want to be able to do if baby won't make it? Do you want an opportunity to nurse? (I could understand either side of this...obviously making your milk come in with no baby to take home would be painful, both physically and emotionally, but I could also see wanting to comfort baby and having that closeness while you can) I don't even know if baby would be ABLE to nurse...its just something that popped in my head. Is there anything else you really want to be able to do? Maybe find out what hospital policy is about you holding the baby/no interventions (knowing baby wont make it), especially with a cesarean-I'd want to make it clear that I want to hold baby immediately and never have baby leave my sight.

As for non preemie NICU care, that varies a lot depending on the reason for being there. I obviously don't know much about this condition so I'm not going to be very helpful, but I'd find out what they generally recommend food wise, if they allow any holding/kangaroo care, how they handle pain (because with surgeries, you want to make sure they're taking care of the pain! I think in our area its not such a big worry, but I know some areas where docs still have this backwater thinking that baby's don't feel pain or something -_-)

Oh thats another thing-I'd also look at the NICU's themselves, especially if the care is a toss up between the two hospitals. I've never seen either, so I can't comment, but I will say this-hospitals can have vast differences in their NICU even in the same area. My non-preemie NICU babe was at St. Joes in Tacoma and they had an open room NICU-one giant room with all the baby's in it. It meant a LOT of noise and zero privacy. My preemie NICU baby was at Evergreen and their NICU was AWESOME. My ds had his own private, full sized room, it was comfy, there was cable (lol), and more importantly, it was very quiet. More important for preemies but I'm sure all babies do better without constant noise. I also know Overlake's NICU has quiet rooms for the tiny preemies, but then they get moved into nooks of sorts-3 walled curtained off rooms. I definitely liked Evergreen better!

[CorasMama]

Unfortunately, baby will not be able to nurse right away, and quite probably will be on TPN at first. But I managed a very sufficient supply with exclusive pumping for my daughter until she started to nurse sometime after 2 months, so hopefully that'll be the case again.

My hospital options are Swedish or deliver at UW then transfer baby to Children's. I think that decision will be based on whether the baby is expected to survive. The perinatologist, though, said that Evergreen and Overlake won't do, as we need a level IIIC/IV nicu.

[bjorker]

I know it's not quite the same, but fwiw, I had a pretty good experience at UW Medical Center when I birthed dd. My L&D nurse was amazing. They are always at the top of all the lists when Newsweek does their annual hospital rankings. All pretty anecdotal, I know, but that's all I got. :\

[DocsNemesis]

I figured that you wouldn't be able to deliver at either of those hospitals, I was just trying to point out that even in a small area, NICU environments can vary HUGELY. If you find that the options are pretty much the same in either hospital-ie, expertise, comfort level, etc-I'd definitely look at the NICU at that point. If I had to chose the *type* of NICU (not the specific hospital), I'd pick Evergreen's style hands down. The privacy and comfort of the private rooms was unparalleled, both for my ds and myself. I mean, think about all the time you'll be spending there! I also preferred the method of care there-although they did what needed to be done, they also discussed most things with me first and allowed me to have a part in all of his care. They also let me do kangaroo care all the time once he was stable (he had bad jaundice and had to be under blue lights for a few days and also had a hard time maintaining his O2 sats while being held at first-I had to learn how to readjust him just right to get them back to normal, over and over) and invited me to change his diapers and such within the first 2 days. Just being included in some of his care really helped me.

I know your situation is totally different. I know you probably won't be able to hold him right away and he'll be going through a lot (as will you). Even so, I'd check out both NICU's, see the environment, ask questions.

[justKate]

As for non preemie NICU care, that varies a lot depending on the reason for being there. I obviously don't know much about this condition so I'm not going to be very helpful, but I'd find out what they generally recommend food wise, if they allow any holding/kangaroo care, how they handle pain (because with surgeries, you want to make sure they're taking care of the pain! I think in our area its not such a big worry, but I know some areas where docs still have this backwater thinking that baby's don't feel pain or something -_-)

Pain management would be a big concern for me. When DD was in the NICU (full term) there was a baby whose mama demanded that one of his parents be present when he was going to have a procedure (even a heel prick). They came in every time the baby needed blood drawn, a new IV, etc.

I can't imagine the pain you're going through now, but I'm praying for the best for you and baby.

Also wanted to mention that there was a mama in my DDC (Feb. 09) who had a baby with the same or a similar condition at birth. They weren't aware in advance. Hopefully she's still around and can offer more insight/support.

[KAT2006]

Mama, I am a NICU RN and just wanted to say that oomphaloceles are not always associated with other problems. I have seen many,many babies who just have that single problem. After you find out more information about your babies you may want to look into how your different hospitals handle oomphaloceles. There is a newer technique called "paint and wait" that we have seen in my hospital that can work better for the large O's. It involves painting the oomphalocele with Silvadine everyday and basically heals it SLOWLY from the skin up, and a compression bandage slowly over time pushes it back in. You do most of the treatment at home. You just might want to have that in your knowlegde aresenal. The other, more standard treatment with giant oomphaloceles involves pushing it back in as much as possible, and can cause longer term breathing (from being on the ventilator) and eating complications. No matter where you deliver, your babe will be on IV nutrition for awhile.
Best of luck!
-Kat

[CorasMama]

thank you. Right now, which hospital we'll go to will depend on if the baby has other problems, and if so, what problems they are. If the baby has even a slight chance of survival (so, more than 1%), we'll deliver at the hospital closest to Children's Hospital. That way, the baby can go immediately over there (and all Children's physicians have privileges where we will be delivering) and get the best care possible. If it really looks like we only have a short amount of time with the baby, we'll deliver at the hospital with the 2nd highest level NICU in our area (they have a level IIIB, or everything but the ECMO, iirc), so that I'll be in the same hospital with the baby. I don't want to be separated from the baby while I recover from a c/s if that's all the time the baby has.

And yeah, Children's does the paint and wait. I'm hoping that's what we'll do, since the perinatologist said this was one of the largest omphaolceles she's seen, and the paint and wait process looks best. But we're not meeting with the surgeons until 24 weeks.

[mamamillet]

My dd was born almost a year ago with gastroschisis. I had no US so we had no knowledge of the defect before her birth. We were very very lucky in that almost everything with her recovery went as smooth as possible. First, she was 8 lbs 11 oz and the initial surgery to put her intestines back inside her abdomen was completed with no need for a silo (where they slowly place them back in giving the abdomen room to stretch). Secondly her intestines were in good shape and in 2 weeks time she was allowed to take food by mouth. I was lucky to be able to pump a ton of milk and I started her with an NG tube rather than bottlefeed to improve our chances of a good BF realtionship. She was dischraged from the NICU at 28 days old and has done great!
My advice to you is to try and maintian as normal a pregnancy as possible. When you say "giant" how much of the internal organs are involved? Why are they saying definite section? If that can't be avoided I would push to have labor start naturally so its on your dd's timeline and she is given every oppportunity to develop inside! Ofcourse that is as long as everything looks ok from US. As far as nicus go for the one that has the most privacy. NICUs can be so loud withh all the beeping and other babes crying and such. Not to mention bonding with tons of other people around. Feel free to ask any more questions since my dd's conditions was very similar....

[annekh23]

Originally Posted by DocsNemesis

I also know Overlake's NICU has quiet rooms for the tiny preemies, but then they get moved into nooks of sorts-3 walled curtained off rooms. I definitely liked Evergreen better!

Yet another Seattle area mum here!

I wanted to deliver at Evergreen because of the NICU, given none of my other babies have needed NICU it was a fairly random criteria to try and choose a hospital on!

I ended up having a c-section at Overlake and after a few hours, our baby did need to go to the NICU (talk about mamma instinct!).

At first she was in what you call a quiet room, though it actually seemed noiser as it was close to the nurses station and where they care for unstable babies.

The nook was actually very quiet and private, there was a comfy chair and I'd have been happy to pump in there if I'd needed to. Evergreen is a baby friendly hospital, but have talked to many women who had babies there it doesn't seem like they are much different to Overlake at the moment.

[CorasMama]

Mamamillet: everything is out in the sac. The entire stomach, liver, bowels, even bladder, and probably spleen. Which is why we have to have a cesarean. It could burst the sac and/or damage the liver otherwise.

[_ktg_]

Former Seattle Mom (and sorry for crashing!) I had DS1 (via c/s - was not NICU) at Swedish and it was a positive experience.

I just want to throw it out there to you for consideration - are you planning on hiring a doula? If you have not - I would strongly consider it and see if you can find one who has possibly dealt with c/s births, preemies & high-risk babes. They maybe able to help you think of all the questions, options and/or decisions may need to make for the birth of your l.o.

Birth and this l.o. is your experience and should be kept in consideration with all that is needed medically. See where you can strike bargins or agreements to help make this birth as memorable as you can.

[WaitingForKiddos]

Dropping in...no NICU experience.

I read ktg's post and had to reply. When I was in the hospital laboring, knowing that the outcome was going to be the worse, it was my midwife acting as doula that really saved DH and I. She thought of things we didnt...like 'Cindy needs food after the birth, I'll get it now so that at 3 am she can eat' or 'the family needs an update' or 'okay, it's time to take pictures.'....all sorts of things that DH and I didn't/couldn't think of. She mad a BAD birth a good birth..if that makes any sense. I really recommend having a doula that is comfortable and experienced with high-risk births/NICU/loss with you.

[bettyjones]

First, I just want to say I am so sorry you are going through this. It is devastating to hear such news . My dd had a small omphalocele. It was also found on the 1st ultrasound but at 27 weeks.

We delivered at a hosp w/ level 4 nicu. Chosen soley for the nicu. But w/ doula & amazing doc a great birth. Birth plan was respected As we neared the birth we toured the nicu and met w/ doc and the surgeon. ALso spoke w/ lactation consultant from the hosp.- great room for pumping at the hosp.

How to prepare. Well I guess I prayed a lot. We had planned a homebirth so our midwife became our doula. She actually went to apt w/ us. Really helpful b/c it is hard to take it all in when things are so emotional. We were told that small omphaloceles are more commonly related to chromosonal abnormalities.

[bettyjones]

I found letting the perinatologists know how important it was to us to spend as much time w/ dd as possible was important. Sometimes docs do what is most convenient for them rather than the best for baby and mama. After dd was born they evaluated her put her in a baggie (covering her lower body to keep moisture in ) and then I was able to hold/ nurse her. Then she went to the nicu after about 40min. What i didn't want was for the baby to be in alone next to a nurse. Your baby's safety comes first though.