Although I was wondering several times during testing if we were going to. The drive down was fine, we actually leave pretty close to the goal (wanted to leave from the school after picking the boys up at 4:10 but we were pulling outta town at 5:00) and got checked into the Ronald McDonald House (RMH) just after 8pm. This time we are staying at the Longfellow House and it's really nice, although our room is smaller. Isaac and Immanuel slept most of the way and after a late dinner at RMH, and a quick visit with granny & grandpa, we went to bed and actually slept alright. Then we got up this morning, got ready and headed to Children's Mercy at 10:00 a.m. Granny & grandpa kept the boys at RMH.
Testing was tough on mommy & Immanuel. First they checked his blood pressure O2 sats, height & weight. Then we filled out paperwork & answered a bunch of questions, stuck a bag to him to catch urine, met with the two different surgery nurses - Kathi & Kitty, then anesthesia, then a research nurse, then Dr. O'Brien, then bloodwork, then chest x-rays, and finally 3 hours later we were free to leave. Sigh. The poor baby was so picked on, prodded and over it by the end he was very emotional for several hours afterwards & you could just tell he'd had a tough morning. The bloodwork was the worst! He had to be held down on a table, screaming like crazy, while they tried to get enough blood for what they needed to do. The one good thing out of it all is that Dr. O'Brien wants him to be in a research study for CHDs, 1 of about 40, that they will track for 10 years, do histories on us - mom, dad & baby, bloodwork on us, take tissues from his surgery, etc., (and nothing will hurt him) to try to learn more about what causes this, so I felt very honored to be able to be a part of maybe learning more, finding a cure, or just getting to be part of the research that I am now advocating for anyway.
It was also pretty overwhelming just to hear all the details, to have to listen to the risks, and to sign off on it all. I'm still not really letting myself go too far down that road so I think I'm hanging in there pretty well. I really like Dr. O'Brien - he was warm, kind, friendly, spoke immediately to Immanuel, and didn't seem at all surgeon "untouchable" ish, but yet did seem very education & experienced - I'm very comfortable with him.
I was very excited to get to meet Melissa, Maccoy & Cayne! They were at CMH for Cayne's appointment so Immanuel & I went over to say hello. Although this was our first face-to-face meeting, it feels like we're old friends, so that was really great. The twins are SO cute and Maccoy stole my heart right away when we gave me a smile & was "talking" to his heart buddy almost immediately! Cayne was sleeping but was just as cute! They're all so stinkin cute!
Well, I guess that's enough for tonight. Hopefully I'll add more or edit in the future but for tonight I need to get my rest. The good Lord knows we have a big, big day ahead of us tomorrow.
Pray for Immanuel, I know God has a plan for this special little boy. We know he's a strong, brave, amazing little guy and he's going to do great tomorrow. We trust you completely. We turn him over to You, Lord, give him & us strength, peace, comfort & faith and may he feel You holding him in Your hands especially tomorrow when we are not able to hold him. God Bless Immanuel & mend his heart & deliver him back into our loving arms, where we always give praise & glory to You! Amen!!
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