They did a 2D echo on Henry's heart Monday and a 3D echo on him yesterday. So far, his heart seems to be unchanged. The cardiologist said that by the "eye ball method", he thinks he can see a little bit of improvement in the way that his heart is squeezing. All of the numbers are about the same and the overall function seems to be the same. We are in the process of decreasing the dosage of the current medication and increasing the dosage of a new medication, enalapril, which is an ACE inhibitor for all of you "heart" people out there. This is the drug that we would go home on, assuming Henry does well with the change. The fact that we did not see improvement with the first medication does not indicate that it didn't work or that we will not see improvement with the enalapril. Hopefully it did what it needed to do, and now hopefully the enalapril will do what it needs to do. The change in the medicines will be about a 10 day process, assuming all goes well. And then hopefully we might get to go home! We have been warned though that often patients take 2 steps forward and 1 step back in this process, so we are just taking it one day at a time.
Henry has been on a continuous very high calorie and high volume feed for 12 hours overnight, until this weekend. We tried to condense them into more of a bolus feeding schedule, meaning more intermittent feeds to be similar to a nursing or bottle feed, while still getting the same volume and caloric intake as before. He didn't do great on them, so we have been back on continuous this week. We will try again later, but not until we get his medication settled. Don't want to switch too many things at once. Overall, he is gaining weight and growing, which is most important. I brought some footed jammies that he was wearing before we came to the hospital to put on him the other night, and they were too short! Had to bring the next size up! Not sure that I would call him chubby yet, but he has just enough on his tighs to pinch a little!
We had a good "family meeting" last Friday with the cardiology team. They all hope that Henry will recover, and hope to get us home as soon as possible. We asked about his heart function and how long he could sustain normal life with the same looking heart...as long as he looks and acts like he is doing well, happy and growing, they are not too concerned with how his heart looks for now. In other cases, it has been months and even years before they have seen sick hearts get into the normal functioning range (on medication of course). And this would be our hope, aside from a pure miraculous healing.
Grady has been up to see little brother twice since we have posted last. Thank you for praying about that...it went pretty well. Grady was of course apprehensive and unsure the first visit, but Sunday's visit he was a little more himself. He does miss his little brother though...he asks about him frequently and says he wants to see him all the time. He also says that he "wants mommy to bring Henry home." We are all so desiring to be together again under the roof of our own home.
Our family has been so well taken care of these past 3 weeks...Grady has gotten to spend a week with Nana and Papa, a week with YaYa, and now a week with WhiWhi. He has been loved on so well! Belle has been walked every morning by neighbors and fed and played with. Our refrigerator has been continuously stocked. Our lawn has been mowed and edged. And we have had lunch brought to us everyday and family and friends to the hospital to visit. Henry has had a great team of doctors and nurses taking care of him. And John and I have been so encouraged and supported by your notes, phone calls, and care packages. We feel so fortunate and blessed to have such an amazing support group. We came into this already emotionally fragile having lost Mona and Pete, and it is only by the grace of God being lived out through you that we are still standing strong today. (We don't always feel strong and certainly have our moments of breakdown, but overall we are staying strong:) ) Thank you. Thank you. Thank you.
Some specific things to pray for this week:
*That Henry would continue to grow
*That Henry would tolerate the change in medication without any hiccups
*That every minute of every day his heart would be healing, and next week we would see improvement
*That Henry would be protected from any illness and anything that might compromise his current health
*Cohesive decisions from the team on treatment
*That Grady would remain happy and flexible with this season of his life
*That John and I would be able to push out the fear of the unknown and replace it with hope, trusting solely in our Lord
*We are losing our primary day nurses (one to maternity leave and the other is switching back to pm shift)...we need 2 new great day shift nurses to continue caring for Henry
