We’re home, and our son is now 17 days old.  Today is our third complete day home with Seton.  He was discharged from the hospital late Wednesday afternoon.  It has been both a blessing and a burden at the same time.  We are so fortunate to bring him home and get to spend time with him as we please.  We also have to organize some sort of routine for his care.

It’s all quite overwhelming.  We understand kids entail a great deal of attention and care, especially when they are infants.  Even knowing in advance he has unique needs, we under estimated what home life would be like.  As I mentioned before, Seton has a continually running food pump, oxygen, a nebulizer, and a suction machine.  For some silly reason, he has not yet learned how to operate all of that on his own.  Although he has been receiving 12 hours of home health care each day, it’s still a chore to watch him and perform all duties which are necessary.

His first two days at home were long and tiring, but they were good days.  We felt like he enjoyed being home, and we were definitely more comfortable at home.  Today on the other hand has been a challenge.  He decided to start spitting up in the past 24 hours, both secretions and milk, which solicits the question – when food doesn’t go into the stomach, how is it spit up?  Our nurse made a call to Dr. Habersang’s answering service.  Dr. Habersang isn’t on-call this weekend, so a Resident on-call returns the message…and has to call someone else for advice.  Grrr.  Our first in office visit with Dr. Habersang is Monday morning, so we hope to get some better clarity on this.

The nature of our experience has truly taught us how to live for each day and count each day as a blessing.  It is something I don’t think either of us have really done or had to do in life, but we thank God every morning and carry forward.  It’s an interesting paradox in thought - so blessed to have this child; so engulfed and unsure of tomorrow.

Shawna and I are still praying and still believing.  If Seton could swallow, he wouldn’t need any equipment to live, which again reverts back to his brain condition.  So please pray with us about those specific issues.  Thank you.

Zane

“Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”  Isaiah 40:30-31