11/15/2009

An encouraging message I received today from a praying friend: "We fight so much against pain and challenges, but that's when he see Him the most clearly." This is the conclusion that John and I have come to and verbalized to one another as we were waiting during Malachi's surgery last week. We talked about how much we learned through the loss that occurred with my second pregnancy (daughter Jordan at 12 weeks) and how much even that prepared us for what we are experiencing presently. Now, we are seeing God in a very real way through the pain and challenges we have been faced with. We do, obviously, wish these lessons could be learned WITHOUT our current circumstances and we pray that much is learned and growth takes place BEFORE the fourth pregnancy (if God so chooses to bless us with another child).

Today was a weird day. Malachi is doing well. His vital signs and blood gases are all at normal levels. The paralytic medication really weirds me out though. He just lays there. He can't make any conscious movements of his own volition. He doesn't blink. He doesn't swallow. Nothing. The only consolation is that we are able to see his little heart beating and we can see his chest rising and falling with each breath. At least he's alive and we know that our little man is fighting.

The drainage tubes and IVs and everything are really starting to make me sick to my stomach. I was feeling really pretty sick by the time we left the hospital tonight (we were there from roughly 12 to 6:45). Just makes me queasy. I definitely shed a few tears tonight as we were leaving. It's just not right for a mom to leave the hospital WITHOUT her baby. But, unfortunately, life still needs to carry on. Emerson needs her mommy and daddy too. Please be praying for us as John will go back to a semi-normal schedule at work tomorrow. We have gotten VERY used to having one another right by our side. Not only will he be seeing me less, but this will also mean he will be seeing Emma less AND Baby Chi less. It will be a weird time of transition for sure.

Tomorrow afternoon they will take Malachi back to the operating room and fuse his sternum back together. Then he will head back to the PICU until he has recovered well enough to be moved back to the NICU to finish recovering before he can have his (hopefully) final surgery before heading home.

In some of my "free time" at the hospital, I compiled a list of Chi's physical current challenges and surgeries. The percentages listed next to the defects/symptoms are how often that individual thing is prevalent in a CHARGE diagnosis.


CHARGE and probable DiGeorge Syndrome:
Coloboma (80-90%) of the optic disk--visual impairment (uncertain of severity).
Choanal atresia (50-60%)--obstructed nasal passages
Cranial nerve abnormality--difficulty swallowing (70-90%) most likely resulting in feeding problems.
Outer ear abnormality--missing earlobes (>50%); uncertain of any middle or inner ear defects at this time which may cause hearing impairment.
Heart defects (75%): Aortic atresia, atrial septal defect, ventricular septal defect.
TE fistula (15-20%)--surgically repaired.
Genital abnormalities (50%)
Growth deficiency (70%)--likely, severity uncertain at this time.
Thymus abnormality (rare)--missing thymus likely resulting in chronic infections and poor immune system.
Hypocalcemia--consistent with DiGeorge
Behavioral--related to difficulties with communication; OCD and autistic-like tendencies; usually NOT mentally retarded. There is a wide variation in the mental abilities among individuals with CHARGE.

Surgeries:
10/30/09 TE Fistula Repair (deconnect trachea and lower esophagus; reconnect lower and upper esophagus).
11/12/09 Norwood Stage I Operation (heart--aortic reconstruction and shunt placement).
TBD--Choanal Atresia Repair
TBD--Norwood Stage II
TBD--Norwood Stage III

Thank you again for all your prayers and support!