11/02/2009 update

So today started off to be a pretty rough day. We got to the hospital early enough to be there by shift change at 7:00. We found out that at 4:30 A.M. this morning he stopped breathing to the point that he required the use of a resuscitation bag to get him breathing again. After hearing this, I was very thankful that we were not staying in the hospital last night. If we had been, I would have gone up to pump at 4:00 (I liked going up there in the middle of the night to have some alone time with our little man) and would have been bedside at the time of this episode. I've seen him get to that point a few other times; not something I would ever get used to and each time is just as bad as the time before. He also desat-ed two other times throughout the day (11:00 and 5:00). Again, I was thankful that we were out of the room at that time. We were in the hospital, just not at bedside.

Right now we are still just waiting for Baby Chi to recovery so we can move forward with the next surgery. Like I've said there are two major surgeries that need to take place in a short amount of time. The doctors would like to do the choanal atresia repair (open up his nasal passages) so that he can breath through his nose like a normal baby. The OG tube is causing him a lot of pain and irritation, but it HAS to stay in so that he has some sort of open airway. We're fairly certain that the Norwood procedure is next on Chi's plan of action (heart surgery). The doctors really want this accomplished before he turns 3 weeks old. This should take place this Friday, or possibly next Mon/Tues.

We also were able to meet with our social worker today. She said she was very excited to meet with us as she had only heard good things from Chi's doctors and nurses--how encouraging! She kind of went through her initial questions (where do you work? do you have good family support? etc. etc.) She asked me, "So, Marissa, you just had the baby a few days ago. How are you feeling?" I was kind of taken aback. I hadn't really sat back and thought about how I was actually feeling. Considering the circumstances, I feel wonderful. There were definitely some things at delivery that were extremely difficult (possibly a later blog post), but because those things took place, I have had minimal postpartum bleeding and besides the crazy swollen ankles I've been able to ambulate with minimal pain and exhaustion. Only by God's grace has my body been able to heal so quickly after delivery. Also, one thing I was super worried about pre-delivery was being able to nurse Chi as I had had such a hard time with Emerson. Pumping has been a perfect fit for me and I had no problem with my milk coming in. It has been a good outlet for me to get away from the bedside and do something proactive to help my baby.

We decided to give up our room in the Ronald McDonald House. The 30-minute commute is going to get REALLY old after a while, but where we live is like the one thing that we can control at this point. We might as well stay at home and hopefully I can make it a place of refuge and rest while we are away from the hospital. We still have some unpacking to do. We do have quite a few boxes of books and a few totes of things that we don't have room for at the moment and need to be transferred to an attached shed at John's parents house. We stayed at the RM House last night and we were greatly appreciative for it, but we are kind of thinking that someone else probably has a greater need for it and we would like for them to have it instead. On the days where Chi has surgery or something is going to happen early at the hospital, we may try to get a room with the in-house Ronald McDonald place just for the night.

Also, the attending physician has decided to go ahead and clinically diagnose Chi with what is called CHARGE syndrome or CHARGE association . There is a genetic chromosomal test that can confirm this diagnosis, but regardless of the test results, Chi is and will be a CHARGE kid. We do not know the severity of how the syndrome will ultimately affect Chi and his growth and development. It will certainly be a challenge, a challenge that John and I are certainly up for as this is what God has ordained for our lives. This also means that our route to China has been suspended or completely removed from our future plans. Most likely, Chi will need continued medical support and chronic ongoing needs. We will probably stay close to the Indianapolis area and Riley Hospital for Children. John and I are surprised at how easy of a transition that has been. We were dead set on missions work in China--to the point where we had sold our home October 16. One night we went to bed KNOWING that God was preparing us for China. We now believe that God was simply preparing us for Chi. There are many things that have happened which would prove that, but I'm too tired to list them ;).

Finally, a good friend of mine from my first home church in Iowa--Willow Creek Baptist Church--made a button which can be added to a blog or whatever to spread the news of Baby Chi and link people to my blog. John and I truly believe that prayer is the only thing that is getting us through and holding up our spirits during this trying time. If you would like to include this button on your site, please use the following HTML code:







Okay, so I don't know how to simply post the HTML code, but if you would like it, email me at marissasharbaugh@gmail.com and i can send it to you that way.

Once again, thank you for your prayers. All of your support has been a HUGE blessing to our family and a testimony of God's goodness for His followers.

oh... and i actually have ankles again--in case you were wondering.