After a little bit of reflection last night, Mike and I realized we have now been away from home 13 nights. At times this seems like forever, and at times it seems like just yesterday I was pregnant and we were celebrating our Anniversary. When looking back at Blaise's journey we are thankful that there haven't been any additional complications during recovery from his first surgery. We are so thankful to God for providing this! As the team of nurses, doctors, surgeons and specialist prepare us to begin our new journey at home as family of three, the reminders of Blaise's incredibly fragile heart are often repeated to us. After a moment or two of having to remind ourselves of this, we remember to just enjoy every single day and not worry about the future. He is waaay to sweet and waay to much fun to do anything else! Plus, his heart seems to be working just fine for him at the moment, God indeed knew what he was doing!
So, rumors and comments about heading home sometime in the future have been floating around. The one thing holding us back is feeding and weight gaining. They need Blaise to be able to do more of his feeds by bottle, and he has had a few steps backward in this area. They also need him to consistently gain weight, and he has been losing an ounce or so each night. Today we met with a speech thearapist/suck, swallow, breathe specialist. He watched Blaise during a feeding, and showed us a different way of holding him while feeding, which is on his side. Blaise doesn't fight the bottle as much this way, and both times drank 25 cc's. We are hoping this just continues to increase! They have also upped his calorie intake again, adding more formula to his feeds, which should help him gain weight.
Mike likes to refer to the checklist of items that need to be completed before we can go home as a high school senior check off list. We've had to start writing a calendar of our appointments on the white board in Blaise's room so we don't forget anything! Some of the things we've accomplished so far: video on SIDS and shaking babies, infant CPR class, HIPS class enrollment, how to make our own fortified feeds, how to use stethoscope to check stomach for feeding tube placement, how to hook up syringe to feeding tube, how to give meds through feeding tube, how to measure out meds, how to track weight gain/loss/ SAT rankings and feeding habits daily in his journal. Mike gave his first shot of Lovonox last night, and passed with flying colors (however, Blaise thought otherwise). I get my chance tonight. We still need to learn how to put in the feeding tube, talk with home health care, and how to use the car bed car seat.
Earlier today Blaise got his Pic line removed, so he is now wire free, and able to roam. He just has a few leads and one small box attached that we can carry around with him. Holding him for the first time with no hook-ups almost felt like holding him right after he was born!! He stared right at us, and the moment was awesome!
Our typical days around here are pretty busy:
12:30 am- wake up for pumping
3:30 am - wake up for pumping
6:00 am- wake up for showering
6:45 am- arrive at Childrens
6:45 am- pumping
7:00 am- Give Lovonox shot, nurse shift changes
8:00 am- feeding (usually takes about an hour)
8:00 am- give Lasix and Vitamin D
9:00 am- grab breakfast
9:30 am- pumping
10:00 am- doctor rounds/ meetings
11:00 am- feeding
12:00 noon- grab lunch
2:00 pm- feeding
3:30 pm- pumping
5:00 pm- feeding
5:00 pm- give Lasix and Vitamin D
6:00 pm- grab supper
6:30 pm- pumping
7:00 pm- Lovonox shot
7:00 pm- nurse shift change
8:00 pm- feeding
9:30 pm- pumping
10:00 pm- head back to Rainbow house
* in between all of this we have lots of other procedures, appointments and visits that happen at random :)
We are enjoying Blaise so much, and love being his parents! Although there are very hard moments, we wouldn't change anything, God has given us great strength!