In Like a Chicky, Out Like a Lamb

I borrowed two different costumes from my sister and sister in law for Gracie to wear for Halloween. So on Monday, we had a Halloween party at my dad's house and she was a chicky (an unhappy one I might add), then on Halloween she was a lamb. It was fun to have Gracie in our home this year for Halloween. Gracie hung out at home while the kids went trick or treating.



Halloween was the first day that we had our old Gracie Girl back. She was happy and smiling the whole day and has been that way ever since!! So we have had a happy baby for 5 days now!! It is SO nice. I don't know if she just finally feels better, or if the increased reflux meds are working or if she likes the new formula we have been giving her. Either way, I'll take it!



We went to see Dr. Su in cardiology yesterday for her post-cath follow up visit. Her sats are in the low 80's on room air and Dr. Su seemed really pleased with that. It is obvious that the stent is working because her sats and her color has improved. Because of that, Dr. Su gave us the go ahead to take her off of oxygen at night--YAY--she was pushing it out of her nose throughout the night anyway.



Last Wednesday, GI told me to try the change in her reflux meds first, THEN change her formula so that we could see which change was making the difference with her. Well, I changed (increased) her reflux meds and it didn't seem to make any difference. So a few days later, I changed her formula from Pregestimil to EleCare. I don't know if it is coincidence or what but she seems to be tolerating the EleCare MUCH better. In fact, she has not thrown up in 2 days!! Also, for all you heart moms out there, the vanilla flavored EleCare formula is WONDERFUL!! It smells like vanilla cheesecake or cake batter. GI told me that EleCare if even more broken down and easier to digest than Pregestimil (I'm not sure why they don't offer it from the start!). Gracie has taken some of the vanilla flavored in a syringe better than she ever took her vanilla or strawberry Pediasure. So hopefully this is the beginning of some happy days for Gracie!


I asked Dr. Su about what we would do in January if her second heart cath came back and her pressures had not come down. He said that no one would want to do a Glenn surgery on a baby with pressures that high. But that doesn't mean they wouldn't do the surgery, they would just have to discuss the pros and cons of surgery vs. transplant. If they were to decide that a transplant would be the best option, she would not automatically be put on the list. They have to draw a ton of blood and run all sorts of tests on it to see if she is even a candidate for a transplant. Then even IF she were to be a candidate and then be lucky enough to get a heart, the heart would last about 10 years before she would need another transplant. With a transplant, you have to take medication every day for the rest of your life. Also, the oldest patient they have at Primary's with HLHS (who had the 3 surgeries) is 18 years old and has not had to have a transplant yet.

We went from Primary Children's straight to our pediatrician's office for her RSV and Flu shots. She did well and it was fairly uneventful. Gracie had a busy day, but she was pretty happy so that made all the difference.

For now, we will just enjoy the fact that she is doing well and know that Gracie is in the Lord's hands and that he has a plan for her. Thanks for all of your prayers!!

p.s. Gracie took about 15 spoonfuls of BANANA baby food the other day. It was great until she coughed and threw up 3 times in a row! We will keep trying but she is really improving in her feedings.

p.s.s. Did you notice Gracie's new doctor? Dr. Taylor Gledhill, cute!!