Today is Henry's estimated due date! We can't believe all the progress we have made in the last twenty days.
We were able to start bottle feeding him earlier this week. The Occupational Therapist has been very impressed by his volume intake as well as the sounds he is making. The first day he took in 8ml, yesterday he took in 10ml, then this morning he took in 25ml! I was able to bottle feed Henry yesterday as well as today. At lunch, the little man only took in 5ml, but that is still doing good! He wouldn't take much at 3:00, but half an hour later he sucked down 15ml. Our goals with the feeding are consistent weight gain for 2-3 days (Henry gained 5 grams yesterday), as well as getting Henry to feed orally. If we are unable to get Henry to feed orally or to show consistent weight gain, we may need to look into a stomach tube for feeding. Many babies with HLHS use up so much energy for oral feeding that they are unable to gain enough weight. This would only be temporary, until he is strong enough to no longer need it.
We have some additional goals that Henry and us must do in order for him to go home. One is to pass the car seat test. Henry will need to prove he can be in a car seat and not become distressed. We will also need to take a CPR class. We had taken a class earlier with St. Francis Hospital, but this will be a good refresher, and my parents will also be taking the class. We will also be trained on the equipment we will need to take home to monitor Henry, as well as things we will need to look for while we wait for Henry's second surgery.
Jason returned back to work today, and will work Thursday before returning to Children's Mercy on Friday. On Friday, I will be heading down to Belle Plaine, KS for my grandpa's (Henry's great-grandpa's) memorial service.
We are very grateful for everyone's thoughts and prayers.
Paige, thx much for all the wonderful news in your update. Henry is doing awesome with his oral feeding. It is clear that he, along with his folks are working very hard.
ReplyDeleteHere's to a discharge date just around the corner.
Nance
Jason & Paige, Looking back at the photos of Henry from when he had his Norwood until now is just phenomenal. He has filled out quite a bit, and his color is so much better. So happy to hear that he is doing so well with his feedings. Sounds like Henry will be going home very soon. Continued prayers for all of you.
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