Saturday, October 31, 2009

we've made it another day.



The days are quickly seeming to become one massive blur. I am trying to take notes throughout the day so that I can sit down and reflect on what actually has taken place. God is continually proving His faithfulness to those who commit their lives to Him.

Today's update: John and I were able to be at Chi's bedside while the doctors made their rounds this morning. Chi is holding steady from a cardiology standpoint. There are two more surgeries that need to take place in the near future. We have the Norwood operation as well as the choanal atresia repair (both of his nasal passages are blocked or were never open in the first place). The choanal atresia repair is necessary and important because babies are mostly nose breathers and right now Chi is unable to do that. They will keep his OG tube in until he can successfully breathe through his nose.

So there will have to be discussion between the docs and surgeons as to which procedure needs to take place first and they will get back to us with their expert opinion. They cannot take place at the same time because the nose repair is a "dirty" surgery and there is a risk of infection, whereas the cardiac surgery is to be completely sterile. However, the cardiac surgeon wants to have that operation take place before Chi turns three weeks old. Also, the central line that was placed during Friday's surgery has the risk of clotting, so they may need to start him on some anticoagulation therapy.

There were a couple of scares throughout the day though. Thankfully, we were not in the room when the more serious episode took place. Apparently, he had a bout of apnea and he needed to be resuscitated with the bag. The NICU doctor was called to evaluate and he ordered a chest x-ray as he thought that there might be a slight collapse in his right lung. The image appeared to be a little off, but mostly fine. In order to combat this a little bit (hoping it's just a little drainage) they have him laying more propped up on his left side. He is definitely feeling pain and they continue to give him doses of morphine throughout the day. I can't tell you how hard it is to not be able to help your little boy, still less than one week old.

On a brighter note, John and I were able to help out with a bath and taking Chi's temp with the thermometer this afternoon. I am still hesitant to touch Chi too much as they want to be careful that he is not overstimulated due to his situation. Also, this afternoon we were able to spend some time with Emerson. It is VERY hard not to feel guilty about leaving her behind while we spend so much time at the hospital. It is also very hard for us to leave the hospital because things can change with Chi's condition in a moment's notice and we want to be readily available to meet with the medical staff here at Riley. I am hoping that this gets easier with time. We were able to call her around 8:00 and say our goodnights.

We are still praying that we will be able to stay in the Ronald McDonald House here in Indianapolis while Baby Chi is fighting so hard in the hospital. Most likely, we will be here through Christmas and it is going to be a long, drawn out, tiresome ordeal. They do ask for a $10 per night to help with the costs of the room for those who stay the night here. Thankfully, they only require you to pay what you can at this time, or ask that when you eventually can make a payment, that you donate to the Ronald McDonald House. John and I are praying that one day we will be able to bless them financially in a parallel way to the blessing they have been to us during these trying times.

So I can go nine complete months of pregnancy and have absolutely NO PROBLEM with swelling whatsoever. Apparently, I had been up and walking around way too much Malachi's first full day here at the hospital. I thought I was getting shin splints due to the pressure in my lower legs. I didn't realize until I changed into some shorts that night that my ankles were now the size of an elephants! They are starting to get better now that I am aware of the problem and can be off my feet some more.

Here's a quick pic of me giving Chi a "bath". It's still critical that we don't overstimulate his little body at this point, so I was pretty hesitant with this.

A picture of daddy with baby. He's been trying out new nicknames for Chi to see what sticks. "Little hero" has become one of his regulars.

When John was leaning over Chi's bed like this we got a nice little surprise... He opened his left eye. Up to this point, he had only slightly opened his right eye. Good work, little man!

3 comments:

  1. Ohhhh, what a sweetie! We've been praying so much, but it's hard to feel the intensity of the emotions of everything you're going through when we're so far away...but your video did it! Tears for you sweet friends! We love you so much!

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  2. We are praying for you guys and your beautiful little boy!

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  3. We're praying for you guys too! Thanks for keeping us updated. I loved the video - it was very touching and as Londa said - it brought on my tears too.

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