Ella had yet another rough night. After last night, I emphasized to the doctors that we need to change the night time feeding schedule. I cannot be up every hour with Ella each night. At first, I thought maybe the tummy was just tight from her surgery and needed some stretching out. So, I tried to be strong and push through the sleepless nights. But now, I’m getting so worn out.
I think they are trying to be too aggressive with her food and weight goals. Do they realize that she is a CDH baby and has a tendency towards “failure to thrive”? In other words, these goals might be reasonable for a healthy baby that needs to catch up, but not for a fluid restricted Bun.
Tonight we are going to try a lot less food and see what happens. I’m hoping for a restful night of sleep. Since we knew we were going to run less food tonight, we increased her daily feed to 90ccs over an hour for each feed. That seemed to go well. Each time I vented her, no air would come out. There was one exception. She was doing great and all of a sudden, started retching so hard. She was having trouble catching her breath and then part of the formula came up her throat. Then, she was trying to breathe but not inhale it. She got so scared. You can just tell when she gives that loud, deep cry. It is so hard to hear those cries. They are genuine and indicate that she is really scared. Of course, all of this happened while she was having the echocardiogram completed. Clearly, the echo tech was nervous and scared at Ella’s reaction.
Overall, Ella’s heart rate is still too high. A few times, it dipped down into lower numbers when she was sleeping. But overall, her heart seems to be working much harder than it should.
When they did rounds this morning, I got a peek at the chest xray from yesterday (BUN was 14). It looked pretty good for Ella and indicates that she does not have a lot of fluid on board. And today, her BUN was 16, so the increased Captopril and Aldatazide seem to be doing their job. Yet, they discussed still fine tuning her regimen between increased Captopril and Aldatazide. We will see in the coming days.
For once, they also discussed thinking about discharge as far as trying to transition the mind set to more of the home regimen. What are we going to do with Ella at home – for feeds, meds, everything? And what do they need to do when she is in the hospital versus outpatient? We have been here 3+weeks. It will be a glorious day to go home.
We’re continuing to rely on the Lord for His timing and trying to be patient. Not just with Ella’s progression of care, but in all things. We feel like there are so many things going on in our lives and yet in the midst of the noise, He beckons for us to stop, get on our knees and hand over our lives to Him. He wants the best for us and therefore, we need to seek Him to ensure that we don’t miss out on any blessings that He has for us.
Continuing to rely on our Lord through the exhaustion. Thank God for where He has us and the progress we’ve made. Here is Ella one year ago today:
Deuteronomy 4:29-31 (The Message)
But even there, if you seek God, your God, you’ll be able to find him if you’re serious, looking for him with your whole heart and soul. When troubles come and all these awful things happen to you, in future days you will come back to God, your God, and listen obediently to what he says. God, your God, is above all a compassionate God. In the end he will not abandon you, he won’t bring you to ruin, he won’t forget the covenant with your ancestors which he swore to them.
