Sunday, May 23, 2010

Another round of drs, another update on baby "Sandal"

So the official transfer has begun.

A new hospital, and new perinatologist. Just one specifically even though there is a full team of them there. It will be nice to be have just one specialist taking over my care. Almost like a normal pregnancy. Except for that one specialist is also assisted by an MA and Midwife that I will also see at each appointment for the routine stuff while the peri worries about the big stuff and the technical stuff. It will be nice to have one specific specialist following my care though. Though all the perinatologists we've met over the past....what's it been? only 8-9 weeks? seems like an eternity...have been wonderful, it will be nice to have a constant.

Our new peri really is great, thank goodness. She had some big shoes to fill after everything Dr H (who was the wonderful peri we saw last week) spoke so highly of her. She is very personable, seems very knowledgeable, and the others we saw before her on Thursday morning spoke very highly of her as well. As a bonus, she was a happy person (ever notice how a relatively high number of drs are just very serious? Not willing to be jovial? bugs me). She also happens to be a native Texan and didn't skip a beat when Aaron (half)jokingly asked, "So, Texas huh? What do you carry?" The woman rattled off a preference without skipping a beat! ha! She also didn't look at him weirdly for asking. Bonus points.


Last Thursday as we did the full care transfer and started getting acquainted with the staff the will now be over our care, and the hospital we will now be delivering at (hospital #4 since this pregnancy began, just in case you were curious), we saw a sonographer (with 20+yrs experience), a Dr of Radiology (who teaches specialties internationally), the MA, the Midwife, the Perinatologist, and a member of the Neonatology team. Needless to say it was a long appointment.

We started with the sonographer who was wonderful. I hear all these stories from people about how their ultrasound was bitter sweet because the person running the machine was awful. I'm so glad I haven't run into that. And I hope we end up with Jo doing more of our ultrasound work in the coming weeks (hopefully months). She was a gem! At one point as we were looking over everything she asked "Have you chosen a name?" I replied, "Yep, his name is Samuel." She paused for a moment and said "Sandal?" I corrected her and pronounced more clearly "Sam-u-el". She started laughing so hard she had to stop the scan! It was great. :) She turned and said, "Now you have to admit that I handled that well! I didn't even flinch or balk. And some of the names I hear....Wow." This then led to a slew of bad jokes about what our other kids names are, and that if we could have one more shot at things we could have twins named Flip and Flop. She was a riot.

But of course we all had to snap back to reality, and as she was concerned about some of the shots she couldn't get, she pulled Dr W (the radiologist) in with us to see what she could find.

Unfortunately things weren't quite so light hearted after that.

We were so very very thrilled last week when after three weeks Sam's ventricles were mostly stable and had only grown a slight bit. After just a six day time span from that last ultrasound until this one, we expected to see roughly the same. But as a reminder that this is truly a day by day, week by week process, We didn't see what we hoped. We were thrilled when his smaller vent measured just under 21mm (less than last time!), our hearts sank when we saw that his other vent was measuring just over 30mm. That is nearly a 50% increase over a period of a week for that side. Obviously that's not great news.
It also appears as though there is some fusing going on between his frontal lobes. I think I have mentioned in the past that we couldn't see the midline division between the two hemispheres of his brain at certain levels. We assumed it was because of the fluid concentration since we could see it both below and above where the fluid was the greatest. We couldn't find it this time.
This then led to a discussion (again) of the amnio results, and reemphasis that they did indeed come back clean, with no indication of a trisomy or major genetic disorder. This seemed to be a bit concerning, and it seems as though there is a bit of wonder as to why we may be seeing this. Typically when brain fusion is present it is indicative of something called Holoprosencephaly (HPE). The good news is that this has been ruled out with the clean amnio. Also this usually comes with some very obvious facial deformities, and we have seen over and over our little boy's sweet perfect face; his eyes, nose and lips are all perfectly formed and we have seen them with great clarity. So what it is that may be causing this? We have no idea at this point. Nice huh?
The only way to really get a better look at this is through MRI where each layer of brain tissue can be looked at in depth. We have chosen to stick with the original timing that was discussed for the MRI ( about 30wks), so we will be doing that in 3 or 4 weeks. Until then the only things we can really watch will be the growth of his head circumference and ventricles. After the MRI we will start the consults with Pediatric neurosurgery-assuming that we are in a situation where it will be a feasible and worthwhile option after we have some more information on what's going on inside his head.

It was really kind of hard to start talking about delivery plans and timing and just what all may be coming up in the next few weeks. Obviously we hope for a couple of months, but we will have more frequent ultrasounds now to see if we can get a good idea of the growth curve that his head is following so that we can accurately plan for a reasonable delivery time. We are still hoping to be able to avoid a surgical delivery, but of course there are a number of factors playing into that as we go over things each week.

It just seems too soon to be having to start planning for all of this.

It's difficult to go from such a high to yet another low. It's like living on a yo-yo. We're down, we're back up, we're back down again, and up. Then it comes time for the down again, so hopefully our appointment in a week and a half will be not another down, but another up. Or at least keep us spinning on the same level without another drop.

We're certainly learning to practice some patience as we go one or two weeks at a time waiting for the next dose of information. Someone asked this weekend "So do you feel like it just keeps knocking you down, or are you sitting at a point where you can say 'ok, bring it on!' as you go to each appointment?" While I'd love to say I was confident and strong enough that I feel like I can handle whatever it is that's heading our way.....I'm just not there most days. There are days when I feel like I'm handling things well, but others-like last Thursday-where I just beg the heavens for the strength to be able to make it through each piece of this puzzle that comes our way. It's hard to feel so optimistic about things to then be left wondering again.
And then we're exactly where we were when this entire things started. Placing our faith and trust in the only option that will carry us through, hoping for the best, but trusting that "the best" might not necessarily be what we have in mind, and praying that we will still be willing-and able-to accept that.



Kelsey said...

I love little Teva.

~LL~ said...

Some will say that God won't give you more than you can handle....

I disagree....

God gives you more, thus pushing you to depend on Him. Just remember, no matter what, He is with you in this and He will get all the glory.

Prayers for peace and clarity of mind, my friend.

Much love

Celeste said...

You're an amazing person! You may not see it in yourself, but you have an amazing amount of strength and faith! I could only hope to handle a situation, such as this, as well as you are!! You're a wonderful example to me!

Tiffany said...

Flip and Flop... I love it!!!

Thanks for the updates your family and little Sam are in our prayers.