Verity saw the pediatric cardiologist at the Lancaster location of the Hershey Children’s Heart Group today. More properly, the pediatric cardiologist saw Verity. Verity slept soundly from last evening until we got home from her appointment in the late afternoon today. She stayed barely awake for an hour, and has been sound asleep ever since.
By appointment time, we were again so thankful that we were taking her in. More and more, we are seeing very labored breathing, sweating, pale/mottled skin, hardly taking anything by mouth, and sleeping nearly all the time. She now looks to me like she is ill. (I’m having trouble getting good pictures of her because of this.)
She has also begun to show signs of acid reflux, which Dr. Chowdhury said was to be expected at this time. She acts uncomfortable if she’s asleep when we feed her, and downright fussy if she’s awake when we feed her. And she has been choking and spitting up increasingly over the past few days. We are to keep her in an upright position at all times and slow her tube feedings way down. If she still spits up, the next step is to feed her smaller amounts more often. They will not give her acid reflux medication. The cause of her reflux, and all her symptoms of congestive heart failure, is her heart defect.
She is already receiving the maximum dose of Lasix. The doctor said “a massive amount.” It cannot be increased any further.
It is time.
Her open heart surgery is scheduled for next Wednesday, August 4th.
If her acid reflux increases to the point where she is not keeping enough food down, we’re to call the doctor’s personal cell phone number, and the surgery will be moved up closer.
We liked Dr. Chowdhury very much. She explained that she is the doctor in the group who cares for all the infant congestive heart failure cases. She also had a lot of specialized knowledge about Down syndrome. After learning that, you can imagine we were excited to hear that she will be the doctor who goes to the Clinic for Special Children once a month to follow up on all their patients with cardiac issues! So we will most likely be seeing her many more times over the following months.
In spite of how prepared we have been for so many months, now that surgery is imminent, it seems so unreal that we are having this discussion. We, Joe and Susanna, have an infant daughter who will be getting her heart repaired. It sounds like something that happens in other families, far away from anything we have ever experienced.
But at the same time, next Wednesday can’t get here soon enough for us.
It looks to us like it will be a very long week, indeed. She is already “not present.” I miss interacting with her. Did I really see her smile? Or had I imagined that? It seems so long ago.
It is hard to see and hear her struggling so much to get her ragged breaths of air.
Joe said it reminds him of the end of pregnancy. By the time labor comes, a mother is so uncomfortable that she is ready to go through just about anything to have that baby be born. By the time Verity’s surgery comes, we will be so relieved to hand her over to those who can fix her poor little broken heart.
Dr Chowdhury said the hospital will call us tomorrow to let us know when we need to take Verity to Hershey to get all the pre-operative work done. She thought it would probably be Thursday, since we will be meeting with the surgeons, and that is the day they do not schedule any surgeries.
She said we should plan on a week’s stay in the hospital, so between now and Tuesday night, we need to prepare and pack for that. I hope to finish that task by this weekend just in case.
Tonight I am completely worn down and out. We are so, so grateful that tomorrow I can rest, with our children spending the day with our friends again! It’s been a week and a half since I’ve had a day to sleep between all the feedings, and some of that time was spent in the hospital. It’s getting hard to collect my thoughts!
We are thanking the Lord for all of you who are so lovingly and faithfully praying for us. We are praying that He will pour back into your lives many times over what you have been pouring into ours.
P.S. If you have sent or given us help of any kind and have not yet received a thank you note, do not despair! If the Lord tarries, you will eventually receive one! The delay is not caused by any lack of gratitude or of thank you note cards and stamps on our parts!