Wednesday, March 12, 2014

Children's Mercy Visit #2 Recap

This past Sunday our little family traveled once again to Kansas City for Monday's tests. HUGE thank you to our friend Mandy and her family for showing us love, hospitality, Chipotle ;), and playtime with the kids.

Here is a breakdown of the appointments we had and what we've learned as we continue on this journey...

Maternal Fetal ultrasound/Meet with OB:
*Ultrasound revealed a possible either obstruction in one of the kidney ureters. We learned that a ureter is the tube that connects the kidney to the bladder. In Chloe's case, it's either an obstruction, or something called reflux, where the urine doesn't pass out of the bladder, but instead backs back up the ureter. We'll continue to monitor this. Our sonotech wasn't too surprised or alarmed, however Chloe's new neonatologist said it could either go away or not be anything, or it could get complicated. If it's an obstruction and she looses kidney function in that kidney, for example, this hinders how she would do with heart surgery. We're a little nervous now knowing it could either be nothing, or it could mean major things. Only time will tell.

*A Biophysical Profile {BPP} was done during the ultrasound. Basically it is a set of 4 different tests/measurments/findings worth 0-2 pts. It's either a pass or fail, and if she fails any of the 4, not receiving a total 8 pts, then she fails overall and would need a stress test {similar to the BPP, but with a few more added points}. If she doesn't pass a stress test, then we consider delivering early as she's no longer thriving in the womb as she should be.

The 4 things tested during a BPP are:
-Taking breaths/breathing. She has to do this at least a few times within 30min period. Does not have to be consecutive or for the entire time, but at least show some breaths being taken. Made us nervous, but finally showed us some breaths.
-Measure amniotic fluid. This ranges from 5ish being worrisome low amniotic fluid to high around 25. Chloe's measured 8 something, which made us a bit nervous that it's on the low side, however they also look for a pocket of fluid at least 2cm by 2cm as well, and thankfully Chloe had one of those pockets of fluid, so she BARELY passed this one.
-Muscle tone. This is measured by watching her hands/fingers and feet/toes to see movement. She did fine here.
-Overall movement. Passed with flying colors. Earned extra credit. Not really, but in theory. She was yet again a pistol, all pancaked in there. Sonotech wasn't even sure if she was transverse (sideways) or breech at first because of the odd position she was in. At one point there was a huge belly-quake, even making the sonotech jump, so Chloe DEFINITELY passed this portion.

We will be doing more BPP ultrasound tests here in Manhattan in the coming weeks. Please pray she passes and does not worry us with needing stress tests!

*OB discussed weight. She is just below the 10% percentile in terms of body measurments, and yet she gained a whole POUND this month which is HUGE. Because she gained weight, it did show overall growth, so she is ok on the growth chart (though again, she's making us nervous since the overall percentile is under 10). The OB then explained different interventions that could be done at birth depending on what weight she is (6lbs means more intervention possibilities vs. 3-4lbs what they can/cannot do to help her). This was hard to hear and although she gained an entire pound this month, the OB seemed leary that she'll reach that 4lb mark at birth. REALLY praying Chloe proves him wrong!!!! Also, at this point, we're planning on relocating (and using the Ronald McDonald house) at 38 weeks (first week of May), with delivery at 39 weeks, though a date is not being set yet in hopes of if not preterm labor or concerns, perhaps getting me close to 40 weeks in an attempt for her to put on more weight at the end.

Fetal Echocardiogram:
Nothing new to report. Heart condition still looks to be the same with no knew shockers or surprises.

Integrated Consult (AKA Round Table Discussion with Chloe's Team):
*Intimidated is an understatement. Something so surreal to walk into a conference room and see SO many people. Don't get me wrong, we're so thankful for this chance to hear everyone, give our own input, and hear them talk and ask questions of each other, all in the name of helping Chloe. But it was intimidating to walk in and see her fetal cardiologist (heart), 2 nurse coordinators (heart/overall health of Chloe from now through however long we need them till she isn't in infant care/baby anymore and into her toddler years if I understand correctly), neonatologist (baby doctor) and his student in training, social worker, geneticist, and palatative care (they are somewhat like patient/family advocate, listens to us, helps give us a voice, makes sure we're all on the same page from now until forever practically). After introductions we were asked to sum up what we've learned so far. Felt like a pop quiz, and we both felt like we failed, but were told we've got an amazing grasp on all of this and greatly understand it all.

*Fetal Cardiologist's report: Re-explained her heart condition. Her prediction is that Chloe will not need the first of the 3 surgeries as one of the ducts looks to be nice and open. The other duct that in most babies closes off-they will let it close off naturally in Chloe as well and monitor how she handles this. If she's stressed, they'll try medicine first to re-open that duct, otherwise final resort is the shunt surgery. At this time, however, she's pretty confident Chloe will not be needing this first surgery (which we pray and praise is the case!).

*Neonatologist: Because of Chloe's MT22, the hardest thing is not knowing what all she could have from different lists of multiple traits. Here's a few possible traits she could have, and could have all or none depending on severity of cells that are mosaic (have that extra chromosome). For this reason, he said she will be in the NICU a MINIMUM 4 weeks for monitoring, testing, observation, etc., and could be longer if she does end up needing that heart surgery. We're to expect no feedings the first few days due to stomach/intestines so sensitive in such a small weight (nutrition fed through veins those days instead), and will most likely need feeding tube or g-tube (in belly) for feedings due to clef lip/palate. Also, he is concerned about that kidney ureter, so need to keep an eye on what happens there.

Overall, nothing too surprising or shocking, yet at the same time, there is nothing easy or simple about this process. Even appointments like this are overwhelming and exhausting for us. I believe the geneticist used the phrase, "We're thankful you guys understand our lack of understanding". Meaning, we understand that even the doctors and specialists do not know what to expect in her case until she's here, and even then, constant monitoring to know more. Many might look at this visit and say yay, nothing new and major, and most likely no heart surgery right away! But we look at it and think...

..We're concerned if she doesn't pass one of the BPP tests...
...How will she fare with a stress test if needed?
...If she doesn't pass that test, would we deliver immediately?
...Concerned that she barely passed the growth percentile measurement...
...What's up with that kidney? Will it improve?? Will it complicate things?
...How often do we need these ultrasounds?
...Do we still relocate at 38 weeks? Do we go sooner if we're concerned? How will our children do with all of this??
...What will those weeks look like in the hospital, in a NICU, with our other littles in tow, having friends watch our kids and missing them when they're not with us, but also knowing the time we'll need alone with Chloe...
...How does one pack for 6+ weeks away from home with littles? 
...New obsession of cleaning and organizing so the house is ready for when we would bring her home...

Thank you all for your many prayers that are getting us through this. There are days that are overwhelming, and other days we're just trying to be a family, raising littles, holding down a job, running a house...but some days, it's so much to even think about, and thus, still taking this all one day at a time.

In terms of prayer...hoping you can glean some ways to be praying from reading through this email. Please also pray for continued health for me (aka no preterm labor), that she'd continue growing, pass her tests, that God would continue to provide and meet all of our needs. This week we were BEYOND BLESSED to receive an anonymous gift that enabled us to get the van in the shop today and fix our brakes, radiator, and grocery money this week!!! God is good, all the time, and all the time, God is good {That's a fave Leonard S. quote there of course ;) }. Thank you to all who have helped us, loved on us, and prayed us through this. If you have further questions or want us to explain something more in depth, feel free to email us privately and we'll gladly do our best to explain.


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