Last Tuesday was two weeks that we have had Sunley HOME. Two weeks that we were never supposed to have! Two weeks of a very normal newborn period – Feedings, diapers, playing with big brother and big sister, and lots and lots of pictures. Thank you Lord! She is now just over 3 weeks old.
Last Thursday, Sunley had a follow-up with her pediatrician, and Dr. Smith expressed some concerns about her weight gain, liver enlargement, and what seemed to be “hard breathing.” She told us that it was definitely time to see the cardiologist, and wouldn’t have been surprised if Sunley was admitted. It totally burst our bubble, and was a sharp reminder that even though she appears so healthy, her little heart is just not equipped to do what it needs to do. Dr. Smith had me up her feedings back to every 2-3 hours, which is not fun after getting used to a 3-4 hour schedule.
The next day (Friday), we had an appointment with her cardiologist, Dr. Ayres, who hasn’t seen Sunley since she was in the womb. It was SO great to see Dr. Ayres again, and she was so happy with how Sunley is doing. She said she was expecting to see a very different-looking baby, and was very happy with Sunley’s pink skin, respiratory rate, and wasn’t too concerned with her weight. Sunley’s heart is enlarged, and her body is experiencing some increased blood flow, so she’s now on a very small dosage of a diuretic. That should help with extra fluid and with liver/heart enlargement, but will unfortunately also cause some weight loss.
This past Tuesday we had a follow up appointment with the pediatrician, and even though I’m feeding Sunley as much as humanly possible, she had lost 2 ounces since last time, which puts her back at her birth weight (7 lbs 1 oz). The pediatrician talked with the cardiologist and decided to start putting some formula in bottles of breastmilk to try and up her calorie intake. Sunley’s little body is just working so hard that she’s burning more calories than I can make for her. Plus, girl’s got some skinny genes running in her family – Derek and I were hardly even on the growth chart growing up.
All of those issues are signs of congestive heart failure, but she’s not quite ready for surgery yet. A PA banding surgery is extremely difficult in that it’s not easy to see how tightly to band the PA. We have to wait until the PA has lost its pressure, otherwise the surgeons won’t be able to get it right and the whole thing would be pointless. Even if we go in at the perfect time, she will be asleep during the procedure, totally relaxed, so there is still an element of a judgment call because the heart won’t be acting completely normal under such “chill” circumstances.
It’s pretty tough knowing that we will reach a point where we just can’t give her what she needs to survive anymore, and knowing that we will see her start to struggle before she can thrive – let alone knowing the pain she will go through with 3 open heart surgeries. Having her home is so wonderful, but it will make it even more painful when we have to take her back to the hospital. We have another pediatrician appointment in a week to check her weight, and in two weeks we will have another cardiologist appointment as well as meet with her surgeons. We were told to expect to set the surgery date at that appointment…but nothing has gone as planned, so we’ll see!
Things are just starting to feel a little abnormal, with the frequent dr appointments, the new medication, and Sunley’s trouble with weight gain. As hard as it will all be, I think when it’s time for her surgery we will all be a little ready to get it over with. The day-by-day nature of all this is pretty exhausting. Still, I’m so grateful that we have been able to postpone her PA banding surgery as long as we have – She’s had so much time to bond with us, get stronger and older, and we hope this will mean an easier recovery in the long run.
Praying for weight gain and clear answers in the next couple of weeks.