The hospital decision has been really weighing on us; however I think after our trip to Children’s the answer was handed to us…We are going to deliver at Presby.  If we deliver at Parkland and she doesn’t need ECMO, she would have to stay there both before and after surgery (as soon as she’s stable, they return to Parkland’s NICU).  Children’s only has a PICU, not a NICU and doesn’t accept NICU patients except for ECMO evaluation/ECMO and then and only then would she be kept there (the only exception is if she’s brought for ECMO and they are able to stabilize her without, then they keep her until surgery and she’s recovered).  There was no way around that policy despite what a parent wants.  While Parkland does have a premier NICU, it’s also the busiest in the nation, a teaching institution, and not private (not a big deal if I only had to deliver, but a huge deal if we have to be there for any length of time).  Children’s will have a small NICU/ L&D when the new tower is built, but obviously that’s not an option for us.  The idea of transfer scares us to death, but both institutions reflected the same thoughts on it which made us feel a bit better.   All that said, if she does go to Children’s for ECMO, we were very impressed with the facility and staff; we’re just going to hope and pray that she doesn’t.  Our Presby visit netted the same feelings, even more so in the sense that we both felt completely confident about the care she’ll receive based on the experience our contact spoke from, she clearly knows CDH kiddos and is beyond passionate about her work.  Admittedly, though, it wasn’t the same sort of calm Dr. Olotuye gave us, but I think the difference was more in his amazing “bedside manner”.  Unless the surgeon decision ruins it (which from what I’ve heard it shouldn’t), we’ve made up our minds.  We meet with a surgeon on Wed who has come highly recommended and have 2 others to check out if he isn't a fit.  

 

If you haven't read Nate's blog recently, his latest entry is hilarious--my 2 cents on it is this...we've gone office chair shopping for him several times (we even have a very comfy office chair in the attic), but he's never sure how long he's going to continue to work from home and so the purchase hasn't been made, poor Nathan! 

 

That's all for now, please keep the other CDH mommies in your thoughts too!

 

Talk soon,

Jenn

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Do you believe 2.0?  I haven’t read of one that high before!  Dr. Olotoye assured us it wasn’t anywhere near a normal fetus’s at this stage, but a promising number nonetheless.  The picture of her lungs (on the MRI) didn’t net us as much excitement just because it was SO clear just how tiny her left lung is.  Her right lung was large but being compressed by her heart.  Her heart looked good; 90% of the possible congenital defects were ruled out by the echo.  One side is a little small though due to it being compressed and some defects don’t present until birth (those are fixable though!)  So, overall, GREAT news for our baby girl.  Nathan and I left Texas Children’s Hospital feeling confident that we will be bringing BGM home, it just may take a little while.  It’s so great to finally feel that way completely; I’d say we were just hopeful before. 

 

All that said, I still understand how these indicators can’t truly predict how she’ll do outside of the womb.  But after spending more than 2 hours watching her on the ultrasounds, this girl has some spirit!  She’s going to be a fighter, I can feel it.  The boys never moved as much as she does and I swear she knew we were looking at her sometimes from the way her little head would poke into the shot when the Cardiologist was trying to focus on the heart or how she refused to leave the cord alone when that was his focus.  It was also clear that she has Jason’s exact nose! 

 

We really did try to nail down a name on our drive home, but we just haven’t both said, “yeah that’s it” to any of our choices.  We also attempted to buy her an outfit after dinner while we were waiting for traffic to die down but nothing was cute enough!  It was fun to be excited about pink though. 

 

There are lots of other details about the visit, but I’m not sure how many are that interesting…the MRI images were amazing.  I forgot to ask for the CD of them, but if I get them, I’ll post a few.  It was like looking at a diagram in a text book or something—a diagram of what you don’t want your baby’s insides to look like, but a diagram nonetheless!  It looked way worse than the diagrams on the CDH sites.  Dr. Olotuye was AMAZING as well as Bella.  I so wish their center and TCH was here in Dallas; then my comfort level would be even higher right now.  Nate and I managed to make a very long, stressful day into a not so ideal, but enjoyable 16 hour date.  How we laughed as much as we did is still a little shocking to me.  We were even able to get back up this morning and hit it again to visit a hospital in San Antonio with smiles on our faces. 

 

That visit netted us one decision made, we're not delivering BGM in SA.  The Dr. we met there was very helpful and gave us lots of good info, including the ECMO consent form which really spelled out for us everything ECMO entails.  The setting however of that NICU just wasn't anything compared to TCH and more so the nurses and other docs we met were just not a fit for us.  We're hoping Dallas Children's will be a happy medium of the two with docs who make us feel like Olotuye did.  We'll start checking that out next week.  Houston may get us afterall, we're just hoping Dallas works out. 

 

A few last tidbits we learned from our Houston visit that we didn't understand before...

1.  If her heart continues to suffer from worse compression, heart failure is a real possiblity (in utero)

2.   CDH babies sometimes have muscular/skeletal deformities from the abdominal cavity contracting (since it's basically empty!)--all fixable

3.  C-section may be much more favorable in terms of ensuring everyone necessary is there (I just thought induction would work out, but if you can assure everyone be there at a certain time vs a certain window of time, why wouldn't you?)

4. Hearing loss is another side effect for CDH babies in general and it's not always associated with them being on ECMO (I had heard the ECMO side effect, but didn't know it happened to kiddos not on ECMO)

 

Finally, our visit ended with Dr. Olotuye telling me the only thing I can do for BGM right now until she is born is to stop worrying and enjoy being pregnant.  I made it through the whole day with out ever even coming close to tears (not even when we saw her pitiful little left lung-I was just happy there was something there), but that statement made me lose it.  Full out bawling, so embarrassing!  I guess I was just overwhelmed that the one thing I can do is going to be SO hard to actually do.  He's definately right though and I plan on working hard at it.  We're going to work on deciding on docs/delivery hospital, working out childcare while she's in the hospital, and then just ride it out!  Who knows, I may even redo Jason's cowboy nursery in some crazy pink! 

 

Talk soon,

Jenn

I know you've been waiting for news. I'm so sorry I haven't gotten to post yet and this is going to brief, but I promise a FULL report by tomorrow (I'll write it on the drive back to Dallas tonight--last night my battery died)

Overall the news from Houston was good--LHR of 2.0!!!!!; lots of right lung, very little left, no major heart defects!  I'll give details later.  Thanks everyone for checking in!

 

Jenn

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I can’t believe I’m back already; it took me a good 30 minutes or so just to press send last night on the email to everyone.  I’m not a private person by any means, but putting it out there like this just makes it so real.  I call it “living the dream” when I let myself just go along with the random people who notice I’m pregnant and want to know if it’s a girl, “yep, can’t wait, buying pink like crazy!!” etc.  When really, I’m still too freaked out to even look at the pink section of the Pottery Barn Kids catalog.  Nate experienced it last week when he had lunch with some old coworkers and just didn’t say anything except that we found out it was girl.  He found it uncomfortable but it was only his first time, it’s actually fun to pretend everything’s fine once and a while.  And, who knows?  It just might turn out that way!  My new friend Amy told me last week to hang on to that belief and let myself be excited throughout this pregnancy, that there’s no reason to let the negative weigh me down.  She’s so right, but it’s really hard sometimes.  I figure though if she can tell me that as sincerely as she did, that I better start doing it; she lost her son Connor to CDH five years ago last May.  She gave me permission today to publish her website (see links), so please check out her angel’s story. 

 

Thanks to everyone for your kind emails, calls, and comments.  I still can’t believe Nate didn’t post a comment about the length, but he made sure I knew it was too long, sorry if you were lost.  I’ll try to be more concise in the future (key word “try”)!!! 

Alrighty—lots to report today.  First, I’m 22 weeks tomorrow which means I have about 16 or so weeks to make the huge decision of where we will deliver BGM.  From my web research I was under the impression that an ECMO - capable facility (Extracorporeal Membrane Oxygenation—a lung/heart machine) was the best place to deliver a CDH baby; all the leading centers in the country (see new links) say that.  Those are also the places that pioneered the in-utero surgery that so many of you have inquired about (I’ll talk about that soon).   Also, all the babies I read about seem to have been transported to an ECMO hospital (if born without prenatal diagnosis) or born in one because they were diagnosed before birth. 

 

Anyway, I had a long conversation with my perinatologist on Friday and he basically told me that that’s not necessary anymore, that Dallas only has one ECMO hospital now (Children’s which is a teaching hospital), AND that I need to do more research on ECMO to determine if that’s really the measures I want to go to save our baby.  ECMO babies can have several mild to severe side effects from being on it and/or the medications necessary to be on it.  His quote was something along the lines of looking within ourselves to decide how much we are willing to do in terms of raising a special-needs kiddo.  Um, yeah, ok, I didn’t realize I had a choice; LITERALLY, I hadn’t considered there were other choices.   He went on to tell me that lots of CDH babies do fine with only a vent and that I would go over this in much more detail when I started talking to pediatric surgeons. 

Needless to say, my conversation threw me for a huge loop.  I think I thought everyone would be on the same page everywhere, but I’m new to the medical game and apparently that’s what 2^nd opinions are all about!  All this time of reading Sheri’s journal about delivering in Houston, I had just figured it wasn’t an option for us and that Dallas would surely be a great choice too.  It may very well still be, but I’m going to do lots more investigating before we decide.  On a side note, the reason Houston is not an option for us is because of the length of time away from home (6 weeks pre delivery because of the high incidence of preterm labor in CDH babes and then how ever long the baby is in the hospital).  We have 2 perfect (if you don’t count behavior ), beautiful boys who need their mommy at home.

 

The other part of my discussion on Friday was about getting the next tests done.  A fetal MRI is the best way to determine the LHR (lung to head ratio) which in turn is a huge prognosticator of viability.  A high LHR increases our survival stats immensely.  In my head, I envision BGM with a 1.8, we’ll see if I’m right very soon. 

 

Babies with a LHR less than 1 are candidates for in utero surgery.  Candidates only as there are several other conditions that must be met.  The New England Journal of Medicine is no longer supporting open fetal surgery at all and the latest laparoscope procedure is completely experimental (not FDA approved).  Only 3 places in the country offer it.  I spoke with Houston today (the 4^th) and Bella (my new best friend, thanks Sheri!) told me that although the directors of their center (Baby Jax’s Dr. Cass and Dr. Olutoye) haven’t done the procedure there in the last 2 years or so. Regardless, I’m pretty confident that since her liver isn’t up that we wouldn’t even meet the first requirement (LHR < 1), so it’s really a moot point and I don’t even have it on our radar any more.  It is fascinating though that they can do it.

 

The MRI is also the best way to determine if there are any other structural (non-chromosomal) defects.  The other test is a echocardiogram which is of course necessary to see if she does in fact have a congenital heart defect as well.  Remember what I said last night about testing vs what happens when she’s born.  We still want to know everything we can before she comes, despite the fact that she may or may not follow what the tests predict.    

 

Dr. Gore set me up with the person in Dallas who does fetal MRI; however after speaking with Bella today in Houston, we’re going to go there for a consultation (therefore all the tests).  Their level of experience with CDH kiddos is just too vast to not take advantage.  Bella is calling me back tomorrow after she talks with scheduling and they want me there before or in my 24^th week (next week or the week after).  She said they’ll fit everything into one day and once were a patient there even if we don’t deliver there, they will follow our case and help us through it all.  She was as wonderful as Sheri said she would be.

 

I made some strides in my quest for a place to deliver too as I have a contact at Dallas Presby to make tomorrow who was the ECMO coordinator there when they had it (they discontinued their ECMO program 2 years ago).  I spoke at some length today with a Director there who called the person I’m talking to tomorrow “their CDH specialist”. I also started some prelim research on San Antonio; that’s one place we could be away from home for some time as our entire family lives there.    

 

OK, so I did it again, wrote a book.  At least I broke it up into 2 posts AND I feel like I've finally gotten everything out there.  I can now just keep you updated and answer questions as they arise.   I'll close with a little anecdote from our day....Ethan has croup and so we are going on day 2 of home arrest without Daddy being home(I gave up keeping Jason away from him as it was just too hard considering he'll probably get it anyway).  He was feeling MUCH better today and so with this crazy 80 degree weather we ventured outside.  Everything was peaceful and being pregnant had to use the restroom so I left them unattented to do so.  Ethan came to get me though as Jason needed me to see him.  "Is it bad", I ask?  "Hmm, you're probably not going to like it", he replies.  I walk over to the sand box where he's sitting ever so nicely scooping sand ALL OVER himself.  I'm dazed by the amount of sand covering him and Ethan announces, "You don't like that I did that to him, mommy, do you?  But you do like that I'm being honest and telling you right?"  "You did it? He's still doing it"  "Yeah, I think he liked it 'cause he just started doing it to himself after I stopped."  Then, as I start to pull him out I just decide to put him back and go get the camera.  The pictures show him sitting on a sort of mound, that's what I pulled him out from under!  Notice the amount in his hair.  Also, when I did start to brush him off, E says, "make sure you look inside his shirt too because I poured lots down it too"  AGH!!!!!!!!!   I swear I wasn't gone that long, maybe 3 minutes?!

 

I hope the pictures work now, we'll see.  Nate will fix them this weekend other wise. 

Talk soon,

Jenn