Consulting with Neo/Surg team - advice?

DavezWife · January 2012

Hi ladies,

So I popped in once before, you were so helpful, looking for some more wise wisdom. Our history, in short... I'm 26 weeks (today!) with di-di B/G twins. Our daughter is doing great so far, but has placenta issues that could mean trouble down the road. Our son is, well... the kid is a mess. Bladder/belly issues, small or missing kidney(s), some minor (?) spine anomolies... but his heart & brains are normal, and he seems to be growing on par with things. He was previously labeled "terminal" due to severe oligohydraminos, but about a month ago the kid surprised us all and has been maintaining decent levels of fluid, and APPEARS to be showing us some hope. His lung function is obviously something we just have to wait and see on... but we have prepared for the worst; it's now suggested we can hope for the best. Great. I'm his momma. I'll fight for the little Cricket until he tells me to stop!

Because of the great changes in his medical status, we're strongly considering going from "comfort cares only" to intubation, possible surgery, etc. if he shows us he can do it. We meet with "THEE" docs at the incredible children's hospital here in about a week. It is our hopes that they will look at all his scans, the MRI we just had done, and be able to give us THEIR best guess as to what to expect when he's born (presuming he comes out alive, obviously) and the kind of measures that would be appropriate and feasible with his issues.

For example, his bladder... it was hugely dialated, then it popped. It's not visible on MRI (so it did pop, vs came unplugged... or he had just emptied it, lol) so they would have to look at shunting it somehow, putting in a temp urostomy or something... I don't know. I'm a nurse, I know adults. I don't know 4 lb babies. (he's SGA) So we'll talk that out.

What other things am I asking these docs?

I feel like I am bringing NO questions to the table other than "Can you fix him?" and that's just making me chase my tail! I need a list, lol.

If you have any things that come to mind, or resources, I'll take them. I'm going to stalk the BabyCenter boards a little bit for some more applicable groups to bug. What else? I know not ALL preemies need surgery or huge interventions, but I figure this would be the right place to ask around?

Thanks!

adrielegorburu · January 2012

I think that "can you fix him?" is a very valid question. My advice is get a notebook now, start to jot down things that you are curious about or any questions that pass your mind, I'm sure by the time your meeting comes around you will have a list of questions. You can also use the notebook to take notes while you meet with them. I'm sure a LOT of information will be thrown at you guys. I didnt have any advance warning before my PTL and honestly the only questions we had right before delivery were "will she make it?" and "what are her chances?" - truely the rest didnt matter at that moment. But if I had known that my DD would be born at 24 weeks I might have other technical questions. You are a nurse so a lot of basic information that I learned "on the fly" about her care you will already know, consider a headstart (we all got our "medical" degrees NICU style!) - I also want to say that I'm very happy to hear about your "little Cricket" surprising you all - it sounds to me like you have a fighter on your hands!!! You will all be in my T&P

jacque_z · January 2012

adrielegorburu:
I think that "can you fix him?" is a very valid question. My advice is get a notebook now, start to jot down things that you are curious about or any questions that pass your mind, I'm sure by the time your meeting comes around you will have a list of questions. You can also use the notebook to take notes while you meet with them. I'm sure a LOT of information will be thrown at you guys. I didnt have any advance warning before my PTL and honestly the only questions we had right before delivery were "will she make it?" and "what are her chances?" - truely the rest didnt matter at that moment. But if I had known that my DD would be born at 24 weeks I might have other technical questions. You are a nurse so a lot of basic information that I learned "on the fly" about her care you will already know, consider a headstart (we all got our "medical" degrees NICU style!) - I also want to say that I'm very happy to hear about your "little Cricket" surprising you all - it sounds to me like you have a fighter on your hands!!! You will all be in my T&P

This is great advice. I kept a little notepad on me all the time while C was in the NICU. Random questions and concerns would come to my mind at every moment except when I was in front of the actual doctors! Also you might get a binder for each baby with tabs to keep track of all things medical. A tab for neuro, a tab for opthmalogy, a tab for pulmonology, a tab for EI, you get my drift. I remember reading one of your post on the high risk board and it sounds like your lil guy is making a lot of progress. I hope it continues! Good luck.

BrookeAWestling · January 2012

I agree with both PP's, start writing down what you want to ask, and organize it. Also, this is probably obvious, but make sure to get contact info of all the people you meet with and make sure they're ok with you contacting them to ask further questions. I always go in with a ton of stuff I want to ask, and then get side tracked and/or confused and realize that I forgot something, or just think of something new the next day, etc...

WaitingforGrace · January 2012

I second the notebook. I had one for my pregnancy that the first section related to my infertility (all my appointments, test, numbers, drugs, doses, etc) and then once I got pregnant, at every appointment I would make a new page, write my questions out ahead of time (with space to record the answer), write in my weight, funal height, etc. At every ultrasound I'd also write estimated weights, lenths, etc.

Once they were born I continued the notebook and had one page for every day in the NICU to record milestones, weights, treatments, levels, etc.

You would be surprised how many times the doctors don't look up things in the chart and ask you. I was quickly able to contribute to conversations as well with the numbers in front of me (last week when her bili level was at __ you said let's hold off on another 24 hours under the lights, but now it's higher and you want to put her back on the lights?)

But back to your question - things to ask the surgeon (you are lucky you have this as my daughter had intestional surgery that was an emergency when she was 4 days old): Ask what order and at what age things are expected to be fixed, ask if he might be able to go home between surgeries or if he'll be in NICU the whole time.

As far as interventions - I have an aquantainance who at her anatomy scan was she had no fluid and her daughter had no kidney's, bladder and her lungs were too small to support life. They recommended she terminate. She said no, went to see specialists who painted the same grim picture. She came back 2 weeks later and they found some fluid and what might have been part of a kidney. They put her on bedrest and made her drink exorbinate amounts of water. They told her there was a 99% chance her baby would die. She went into labor and the baby was born at 30ish weeks - she was 3lbs of healthy perfect baby girl. She was in the hospital for a couple of months for normal preemie issues and is now a healthy toddler. There is no explanation why her lungs weren't as large as they should have been or why they couldn't find both kidneys or her bladder on over 20 ultrasounds.

So after all that, I would recommend whatever interventions you feel comfortable with to support life until you can confirm the in utero diagnosis.

(sorry so long - your story just hit close to home)

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