Our appointment was at 9:45 this morning at the Lancaster branch office of the Hershey Children’s Heart Group. Was I ever thankful we already had that appointment set up!
We’re home now and through another feeding cycle, so we’ll see if I can post something coherent here before the next cycle starts! (We have to stop telling our children that we don’t think this appointment will be as long as the others!)
Does anyone else remember the song by Don Francisco, “Love is not a feeling, it’s an act of the will?” Not a particularly delightful song, and that phrase is all I can remember of the lyrics after these twenty or so years.
Well, last night, for me, TRUST was not a feeling, it was an act of my will. I had to act on what I KNEW to be true in spite of all my feelings shouting at me to listen to them instead.
My feelings said, “I don’t want to give my baby to God.” When in reality there is no question of giving Verity to God. What a superfluous idea when she already belongs to Him.
My feelings said, “She is safer if I stay awake and watch over her.” When in reality my staying awake would have robbed me of needed sleep without giving her an iota of added benefit.
My feelings said, “I am right to worry and be afraid.” When in reality, worry and fear are unjustified disobedience if God told me not to be anxious for anything, not to fear, and to trust Him instead.
He brought the verse to mind, “You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You.”
Lord, You will have to help me trust You with this baby. I choose to trust you. I am trusting in You.
This morning, Verity had another echocardiogram and EKG.
The nurse and the cardiologist, Dr. Johnson, listened carefully as I described how she did in response to her first level of Lasix, started at twelve days old. After three doses, she had one good day and then started going downhill again.
And how she did in response to the doubled dose five days later. After three of the increased doses, she had a partial improvement for about three feeding cycles, and then started going downhill again. Except this time, she went lower and got there faster.
Verity’s heart and lungs are on overload. Her heart is working hard even when she is asleep, her lungs are filling with fluid, she is laboring to breathe because of this, and she is failing to eat enough calories to power all this activity.
The *ideal* would be for her to reach a minimum of two months of age before her open heart surgery. Not only would her heart be bigger and easier for the surgeons to work on, but babies do better with anesthesia after the age of two months. I did not ask what “do better” meant in this context.
So the *ideal* goal would be to help stabilize her enough to put on weight and grow for six more weeks.
But so far, she hasn’t been on an *ideal* track. Based on all the information that the cardiologist now had, both this morning’s test results and her history, he said it is looking a lot like she will need surgery before then.
We have basically two tools left in the toolbox that can be tried. One, he doubled her dosage of Lasix again, bringing it up to the maximum dosage level that can be given to a baby of her weight. He said “she may surprise us” and respond by stabilizing and getting into a good gaining pattern. If she does gain, they can increase her dosage proportionate to her weight.
If she simply fails to eat enough, but in other ways she looks good, they will try tool #2, a medium chain fat added to her diet to bring her total calories up even higher.
There’s another medication they cannot give to babies with Down syndrome because it compromises the immune system, and they already have lower immune resistance.
Anytime we can see “increased work in breathing,” or “decrease in feeds,” we are to call in, day or night. The whole team is kept informed as to all the details of her case, so that her surgery could be scheduled at any time with any of the surgeons. They told us that there are very few heart surgery babies in the loop right now, and that we should not be hesitant to call, thinking that the staff is over-loaded with cases.
I asked about the naso-gastric tube, and he said if she gets to that point, she needs to have her heart repaired. I must confess that I was relieved to hear this. The hidden blessing that may be in an earlier surgery is that she may be the more likely to successfully breastfeed afterward than if she is bottle- or especially tube-fed for months beforehand.
For those of you who aren’t belabored by details, or even find them intriguing, last Sunday was the last day that she took in 16 ounces, the minimum daily amount that she needs. Every day since then has shown an decrease from the day before. This is in spite of doubling her dosage of Lasix on Tuesday. So far today she is on track to take in even less than yesterday’s total of 14 ounces, since even if she takes in the best case of two ounces per feed for the remaining three feeds, she will total 12 1/2 ounces.
So her plan of care will depend on how she does, which in turn depends on how God decides she will do.
And there we rest.
Daniel with a worn-out Verity this afternoon~