11/22/2009 A good surprise

A Good Surprise

I got to hold my baby!! We knew that the time was probably drawing close where we would be able to hold Malachi again. However, we weren't wanting to get our hopes up that it would be anytime soon. I was completely shocked when the nurse today asked if we wanted to hold the baby. Um... YES!!! I had been LONGING to hold my baby since the few minutes I was allowed before surgery two Thursdays ago. I sat in bliss for just over an hour as I was able to cradle my baby in my arms as he snuggled right in and took a nap. The entire time his heart rate remained low and steady, his blood pressure was great, and there was no wincing or grimacing of pain. Honestly, I don't know who benefited more from the contact--me or Baby Chi. I think this should mean more baby snuggle time. I am planning on getting to the hospital early tomorrow morning so that I can be there for when the NICU team does their rounds. Hopefully tomorrow we will have a bit more of an idea regarding time frames of upcoming surgery and recovery and other things that need to take place so that we might get even a vague idea of when we may be able to take Mr. Malachi HOME!

(disregard the weird look on my face)

For more information regarding CHARGE, visit http://chargesyndrome.org/about-charge.asp.
I have been working my way through a 250+ page manual for parents that this organization has put together. I am already finding it to be an invaluable resource for learning about CHARGE and the different areas where I will need to be an advocate for Baby Chi and his ongoing professional care and medical needs. On one hand, the saying "knowledge is power" is proving true. I am educating myself in many aspects of CHARGE that the medical staff hasn't necessarily brought up yet. With this information I feel more confident in the questions that need to be asked and getting an idea of what I should expect from the doctors overseeing Chi's care. On the other hand, the more I learn about all of the factors of CHARGE and the severity of all Chi's problems, the more I realize that I will only be able to be the advocate, mother, and nurse that Chi needs through strength which can only be provided by the Holy Spirit.

All of the battles and major structural defects that Chi is currently fighting are very much life-threatening. Each surgery is major and each brings the risk of infection and further complications. One sobering paragraph I read within the CHARGE literature included this statement: "Children with CHARGE and TEF/EA (transesophageal fistula/esophageal atresia--Chi had both) hav ehigher mortality than other children with CHARGE. This is especially true when combined with choanal atresia and/or a heart defect." WOW. Many times CHARGE is not immediately diagnosed and many defects and things can go unnoticed. We are EXTREMELY thankful that Chi's structural defects were identified early and are being taken care of one by one. Thankfully, we know that God is in control of all things and is personally sustaining life--Chi's life.

I am certain that we will struggle with his communication as he will most likely have impaired vision AND hearing. I will write more in-depth regarding deafblindness in a later post. All I know is that we will need to be creative and flexible when it comes to building some sort of communication with our son. It is very important to me now to be able to hold and touch him as much as I can now so that we can start to begin that physcial bonding most parents have from the beginning with their children.