In order for Harrison to be able to leave he needs to be taking all his feeds orally (he is getting the rest through his feeding tube). He is currently somewhere around 65%. Once he gets to 100% feeds for a day or two they will put Harrison through a series of tests he needs to pass.
-He will need to do a room-air challenge. For 45 min his performance will be monitored without any O2 assistance. He will need to be able to maintain his O2 saturation at a certain level.
-He will have to pass a car seat challenge. He will need to tolerate sitting in a car seat for an extended period of time and his respiratory ability can't be impeded.
-He will need to be Brady free (Baby-apnea) for 5 days.
Mom and dad will have to pass a test too. We will need to watch Harrison in the hospital for 24 hours in a family room. The nurses will want to see that we will be capable to care for him, give him his meds/vitamins and feed him.
If all this goes successfully we will be discharged and on our OWN! We are pretty thrilled and pretty scared at the same time. With the best babysitters on the planet and 24 hour care and monitors letting us know exactly what is going on, it will be a stark contrast. Our first car trip with Little Man will be 1700 miles, a little daunting by our standards. So with all the anticipation and excitement comes some concern and anxiety. But I suppose every step of parenthood is a chaotic tandem of emotion.
Harrison continues to do really well. We found out earlier this week that the tiny holes in his heart are completely closed on their own. The PDA and VSD are done and we don't have to look back. He weighed about 4# 11oz last night. He is waking up on his own when he is hungry and telling us what he needs. He keeps maintaining his increasing feeds as he gains weight. And his lungs are doing awesome. He is periodically having Bradys but they are fewer and he is recovering faster from them.
The thought of saying good-bye to Harrison's primary nurses that we have developed a relationship with makes us sad. But one of the nurses said you are gonna walk in here and we will have to kick you out, so get ready! It's all up to Harrison, and it could sneak up on us faster than we are expecting. And the thought of home is a little more powerful than saying goodbye.
Ronald McDonald House
Several people have asked if we need anything. We really are in good shape in terms of food and gift cards. We have been directing people who ask toward our stay at the Ronald McDonald House. We need to pay $20/day for our time in the house. We have been blown away at the generosity of so many, and it's pretty hard to put this up. But if you would want to help in any form or fashion with that email me, firstname.lastname@example.org and I can get you the details on how to make that happen.
As well, I would add if you mail anything after Oct 20, send it to our address in NC.
1005-G Kingswood Dr.
Chapel Hill, NC 27517
Prayers for us:
-Pray that Harrison or us don't get sick.
-Pray for all the details, with packing, becoming parents, traveling come together as we think through the transition.
-Pray for Harrison to continue to gain weight and get stronger everyday.
This whole experience has given us new perspectives on life. While we have been stressed out of our minds, and anxious beyond human recognition, at the same time, we have been overwhelmed by the love of Father and seen His care for us through skillful hands and gracious hearts of so many. Thank you for walking beside us in this season.
Stay tuned, cause the ride is just about to start!