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Happy ONE WEEK Birthday, Baby Chi! He's made it seven whole days, still battling, and still staying strong!
There was a nice surprise waiting for us when we got to the hospital this morning. We didn't make it in time for shift change at 7 as we had planned. We decided to hit snooze for a while and get a little bit more shut eye and spend some time with Miss Emerson before heading to the hospital for the day. BUT, when we got to Malachi's bedside his eyes were cracked opend. At first it was just his right eye, and then both of his eyes opened (both open at the same time is still a very rare occurence). They started feeding him breastmilk yesterday, as opposed to the TPN and sugar water that he had been receiving. Apparently he tolerated it well enough for them to increase the amount three-fold throughout the day today. However, they have to feed him through his OG tube. Any time his OG tube is bumped or messed with, you can tell it hurts his little body. We are pretty sure that he was kind of swollen at the time of the transfer, possibly with all of the IVs and things. Now that some of those IVs have been removed, his fingers are much less swollen and SO LONG!! He's got really big feet too (in a cute newborn baby kind of way). We definitely wish we could hold and touch him more, but for now we mostly just get to look. Hopefully we get to hold him again before his next surgery, which is being held off until next week.
We are realizing how providential it was that we were actually able to meet with all of Malachi's doctors the first few days that he was in the hospital at Riley. More and more it seems we "just missed" a doctor as he came to check on Baby Chi. Thankfully, our nurses are fully able to fill us in with what we missed, but it's nice to be able to meet with them in person. The neonatologist who worked on Chi at the first hospital (the one I delivered at) stopped up to see us. He was in the area and had been thinking about us today, so he came to see if we were around. We were very thankful to have Dr. Winchester taking care of our baby before anyone knew what was wrong with him. God gave him the wisdom to order the right tests and all that NOT KNOWING Chi had the heart defect. He said that he had posted a picture he took of me and Chi up on the wall by the charts and has been praying for us often. He spoke very highly of John and I to our nurse and was amazed with our intentions for selling all (okay, more like "most") and moving to China as missionaries. He was amazed at how our priorities were set on being debt free and all of that and relayed some of that information to the nursing staff during his visit. How encouraging!
Today was the first day that John and I have really been apart from each other since he was transferred to Riley. It was weird. He went in to work for a couple of hours and it was just me and the baby. I left his bedside to meet mom and Emma downstairs for lunch and then i had a couple of other things to take care of while John was gone, but otherwise it was just me and him. We shared a special moment for which I am thankful. You could tell he was irritated and not happy. His heart rate and BP were high and there was some grimacing looks that came across his face. I put my finger into his hand and he grasped it so tightly! He then took his other hand and placed it around my thumb. I started talking to him and he kind of opened his eyes (both again) almost as if he was trying to find me. It was amazing!
On another note, mommy guilt is setting in. I feel really bad about not spending much time with Emerson over the past week. I understand that it's been a whirlwind of doctors and information, but i'm still her mommy too. Obviously, this is something that I'm going to need to work through, even if it means I may have to go a day without seeing Chi. I don't think I can do that at this point though. Surely, with time, I will be able to find a balance--at least I hope. Please pray for me as I try to discern the best way to go about this. Thank you.
Also, we received a super sweet care package today and the cards and letters of encouragement are certainly doing their job. We have been GREATLY encouraged to know that we are not persevering alone during this trying time. We know that God uses trials as a refining fire and pray that many lives are blessed through this experience and the ongoing challenges that we well face as parents of a child with CHARGE syndrome. Thank you. Thank you. THANK YOU!
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