Home Teaching

Henry continues to look better each day.

Yesterday, we had a very special visitor, Dr. Jill Bolton, Henry and Owen's neonatologist during their time at ACH NICU.  She was wonderful with Henry and helped him be as ready as possible for his surgery.  It was great to see her and she was so kind to bring Henry and Owen hand-made knitted quilts (made by her own mother). We will put these special items in a memory box for the boys.  We feel very lucky to have been taken care of by Jill and her great team, as well as Dr. Clark, Dr. Majeeda, Dr. Fruitman, Dr. Meyers, Dr. Pollard, Dr. Cooper, Dr. Patton, Dr. Lahda, Dr. Ross, Dr. Rutledge, Dr. Cheryl, Dr. Bulal, Dr. Joynt, Dr. Townsend, Dr. Quinonas, Dr. De Caan, Dr. Hornberger .... countless special NICU, PICU, Cardiology nurse, more doctors, more residents, more Fellows.... Literally 100's of people have helped us in Henry's journey!

Today, there was a lot of action. Henry's holter monitor (to record 24 hours of his heart trace) was removed. This will be downloaded to a computer and analyzed to make sure those 'extra beats' they saw are regular post-op stuff.  After that, a nurse came and taught Hal and I how to insert a nasogastric (NG) tube. Because Henry is just getting up to speed with eating by mouth, he sometimes tires out and doesn't eat as much as we (and his medical team) want & need him to.   When Henry comes home, we will have to weigh him pre- and post-breastfeeding.  This will allow us to know how much he took. If it isn't enough, we will put expressed breast milk down the NG to "top him up".   We will change that tube once per week.  Insertion takes no time at all and doesn't seem to bother Henry too much.  Hopefully he won't need it for very long.  Today, Henry breastfed and didn't seem to have a problem at all.  He had 2 visits from Occupational Therapy also - they are experts in feeding and positioning. They wanted to watch us with Henry and see if we or he needed any help or tips. He did great and they had no concerns!!

Henry had another echo today.  This is normal post-op to continue to make sure things are looking as they should. The tech, Dell, was great and talked us through much of what he was seeing.  He showed us that, by either luck of the anatomy or skill of the surgeon (or both), the VSD (hole in the heart) lines up directly with the shunt (or tube that currently carries blood to the lungs from the heart).  This is good, as it allows Henry to maintain very good (high) oxygen saturation because of the great flow to and through that shunt.

We also had visits from cardiology (Dr. Meyers) and from a cardiology clinic nurse (Julie).  We had more teaching about things to look for and expect with Henry over the coming months.  They were great and took so much time to answer any and all questions we had.

So, there is a lot of mention of home and teaching....and we are expecting to take Henry home this Friday!!!!  We are beyond thrilled and so look forward to just being at home as a family again.  Much as we love all the medical professionals who have been taking care of us, it is A LOT of time, effort & energy to spend 9 - 5 at a hospital each day.

A final note today... a total aside - for families going through this and reading this blog for informational purposes..... Babies with or without heart problems cry!!  In going through this process, you become highly stressed (of course) to the point that you automatically panic that something is wrong with the heart if the baby cries..... Just something to remind yourself about... Yesterday, Henry cried pretty hard about the removal of some very sticky tape from one of his wounds or tubes.... I felt, honestly, so panicked (almost to the point of ridiculous)...until Hal reminded me that non-cardiac babies cry too :)

We will upload some pictures again tomorrow.....so you can see for yourselves the progress Henry has and is making.

Thank you, again, for all your support and for following our journey.