Friday

Friends & Family,
God is good to us. He doesn’t give us more than we can handle (with his - at times - unseen or unfelt support). Even in the midst of some of the difficulties we’ve experienced these last two days, he has been good to give us some good hearty laughs as well: Samuel rolling his eyes at the Occupational Therapist as she tried to bottle feed him - ‘come on woman, give me a break!’; Sara and I having to dress up in yellow surgical gowns and blue hats for the trip down to the OR yesterday; funny personalities exposed. Things go from intense to silly pretty quickly. Laughter is good for the soul and God is helping to relieve some of the stress and pressures of this life we are now living by giving us some things to laugh at.

Samuel’s surgery went very well yesterday. The OR nurse told us he did great during the surgery, his heart sustaining it quite well. While Sara and I were expecting one kind of G-Tube and he actually got another (b/c the one we were expecting is on back-order) he is beginning to eat through the G-Tube and the NG tube is no longer up his nose. We are very glad to get rid of another tube and look forward to his G-Tube being the low-profile button we were anticipating. All things in their time, I reckon.

After not eating for about 36 hours because of Pre-Op prep and Post-Op recovery (IV fluids don’t count as eating), Samuel finally got about 1/4 dose of his full feed today at 1pm through the G-Tube. The plan is to build him back up to ‘full’ feeding over the next few days (or faster if he tolerates them well).

The Cardiologist was up again today (he looked at Samuel every day this week) to read another Eco. They are particularly interested to see how his aortic arch is responding over time. In one spot it is a little small and will, unless it changes on its own, require surgery to correct - hopefully at around 6 months when the VSD and ASD are fixed (3 birds with one stone, as it were). Depending on how it does, however, it might require a separate surgery to repair - and sooner. These heart surgeries (or this heart surgery if we can just have one) will be done down in Charleston and might require a stay of 4 weeks.

On the diagnosis of all this ... nothing really. Three of the four genetic tests that have been ordered have all come back negative (or normal). So, Samuel does not have VCF (Velocardiofacial Syndrome or DiGeorge Syndrome) - the q11 gene on the 22nd chromosome is in tact. He does not have a mosaic Trisomy 13 - the high resolution chromosome scan confirmed the amniocentesis that his chromosomes are normal. There was another genetic test done on a particular part of the chromosomes’ “tails” that revealed nothing irregular. While these results are in some way ‘good’ news, we still don’t know what it is that is causing all these ‘interesting’ abnormalities in our son. At some point, a specific diagnosis would help us ‘get on with it’ (so to speak) as far as expectations for the future are concerned. One way or the other, and for whatever purpose, God has not revealed to us these specifics. There is yet one genetic test they are running to test for another known condition, but this too may not reveal anything. It would seem that we are being pushed into a corner to live by faith and not by medical or genetic knowledge. We must take every day as a new day, full of new compassions and mercies from God and trusting him to provide what we need for that specific day. This is what we must do ... it is not necessarily what we are doing. It is for this that you can pray ... one day at a time, relying on his compassions and mercies for that day.

Thanking God for laughter, good doctors and nurses & the Body of Christ,
grant