Friday, February 7, 2014

Appointments On Monday at Children's Mercy

I've been procrastinating on this post. Mainly I guess because I don't know what to anticipate or think myself. If get get my hopes set on it going really well and getting a lot of answers, we probably won't and I'll get discouraged. In a weird way our doctor mentioned that we might not get many answers on Monday as the doctors at KC will probably want to sit down and go over all appts/tests/etc. at once to discuss Chloe, and at that point we'll then get some results. Thankful to know this as I am the type that if they say nothing, I fear the worst, so we can now go into this knowing it's ok if they don't say much. So I've tried to not think too much about it. But alas, it's late Friday night...only a few more days and then we'll see her heartbeat on another screen. We'll watch the splotches of red and blue and how they navigate her heart. We'll talk to genetics...again. We'll meet with new doctors...again. So much new stuff... So for now, instead of worrying too much, just going to continue to lay low as a family, continue to cuddle the kids this weekend, and just breathe until Monday.

Here is a timeline of the day. Many of you text/email asking what time appts are so you can pray, so below I've listed the appointment time, and ways to pray:

-Sunday afternoon our sister-in-law will arrive to watch the kiddos while we head to KC. 

  • Please pray for safe travels for her down from Iowa; for safe travels for Alan and I over to KC to stay with friends that evening; that we can get our van looked again tomorrow (Saturday) so that it's safe for us to take to KC/Praise for friends willing to let us borrow theirs as backup should it not be able to be fixed/cost too much this round. 
-Monday Appts
  • Please pray we can figure out where we're even going! Never been to Children's before. Safety in travel there and also back home that afternoon. Pray weather holds out and no snow. Pray for wisdom, knowledge, and discernment of doctors and staff we'll interact with.
-8:30am Genetics
  • Not even sure how to pray for this one. They're hoping to gather more info, but not sure what new info we could give them. Pray for our endurance in repeating this whole journey over again and answering all family health questions again.
-9am Echocardiogram for Chloe's heart
This is where they'll do at least if not more than an hour specifically on Chloe's heart, learning how it's developing and functioning in hopes of learning what they can do for treatment.
  • Please pray for wisdom of Dr. Swanson to know how Chloe's heart is functioning. For Chloe to cooperate and let us get a good look. For patience for me especially-these sonograms are so hard in that they don't tell us a ton of information right off, so it's a lot of silence and just watching the screen, not knowing what's normal and what's not. Dr. P also warned of the whole laying on my back for that long can make me nauseous-already dealing with a bit of nausea yet these days, so pray I can get through this without the nausea.
-11am Meet with OB Anesthesiologist
  • Policy for Children's to deliver there is that I have to be approved health-wise to deliver there without risks, otherwise I'll have to deliver at a nearby or adjoining hospital. Pray I'd be ok to deliver at Children's. 
-12-1pm Lunch Break

-1pm-3pm Sonogram with Maternal Fetal Medicine 
In other words, over an hour of sonogram looking at every detail of Chloe to make sure we know all aspects of what's going on, from cleft palate to club foot to heart to kidneys-everything, then meeting I think with one of the doctors to go over everything. 
  • Please pray that again, Chloe would let us get a good look and cooperate. The nurse mentioned that they'd like to try getting the 3D or 4D images too, so let's pray this works. At Topeka they tried to do 3D of her cleft palate, but she was fairly insistent that it not be seen if only for a split second. 
  • Pray that all her organs are looking and functioning as they should. 
  • Pray that the fluid on her neck is going away/not increasing. In other words, pray it's GONE. 
  • Pray that they can see her cleft palate well enough to know how they might like to treat it when that time comes. 
  • Please pray that nothing else looks out of the ordinary with anything else. 
  • Pray for safe travels back after a long and exhausting day. Pray safe travels home on Tuesday for our sister-in-law. 
Thank you all again for your prayers and thoughts. One individual even commented that she's wearing red each day this month (Feb is Heart month) for Chloe. I had tears when I read that-such a great gesture. And I'd probably do the same if I owned anything maternity that's red ;). You know who you are, and it means the world to us that you're doing that. Perhaps wear red on Monday for Chloe, and if you do, send a pic we can post on her page :). {On that note, I might just go lay out the kids' clothes for Monday and choose something red for them to wear as well!}

He is the Great Physician. Resting on that truth tonight.


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