Happy Birthday Ruth!
We had a very active 4 month birthday yesterday. Ruthie and I started our morning by eating quietly (which was the first time in a few days). She polished off her 3 oz bottle and then proceeded to play while I got ready. After a diaper change and a new outfit, we were out the door at 8 am and on our way to her cardiologist, Dr. Goel.
Doctor Time...
Ruthie did really well at this appointment. She must be getting use to all the commotion and poking because she just sat there and took it. Ruthie weighed in at 9lbs 11 oz and is 23inches tall. She is just moving right along. Her O2 stats were at 74 which is about her norm now, or at least it has been the past couple visits. Her blood pressures were good too. However, when Dr. Goel checked her groin pulse he was a little concerned since it was not as strong. So without too much of a hassle, Ruthie and I went down the hall for an echo. Once again, Ruthie did awesome with the echo. I think yesterday was just "her day." She was very content. She even placed her hand around the cord and held on tight, as if she was helping. About halfway through the echo she began holding the technicians', Deborah, hand. Adorable. I wish I would have brought the camera. Next time though, next time.
Echo results:
They echo took a mere 20 minutes because Ruth cooperated so well. The results of the echo were not much different than the last echo. Her heart still has poor function. With the last echo, Dr. Goel put her on Lasix twice daily hoping that if we lost the swelling we would gain better heart function. Well, the swelling is gone, but her heart is still not contracting as hard as it needs to to pump all the blood out. Basically, her heart is not squeezing tight enough, so fluid is backing up in her lungs and around her heart. This is causing her hands to be bluer and is why her heart is not looking good. So we are continuing the Lasix two times daily and we are increasing her enalapril to .6 twice a day. We hope that the Lasix will keep her lungs clear and will help get rid of the extra fluid she is holding onto. We also hope that the increase in her enalapril, the heart medicine, will help her heart contract more efficiently and will then bring the pressures down.
Now when is comes to pressures...
we are kind of going in circles. Since her heart is high pressured right now, surgery may be risky. Like we were told earlier, if her pressures are too high, surgery may not be an option and then we would need to be on the heart transplant list. However, the Glenn will relieve the pressure in the heart and will make Ruth much better and her heart work much more efficiently. So surgery, the Glenn is what we, us and Dr. Goel, want to be able to do. But since her heart is high pressured we don't know if we can. We need the Glenn to lower pressure, but we can't do the Glenn if her heart is high pressured. It is a crazy circle.
So our plan of action....
We are increasing her medications as of this morning. She seems to be tolerating the increase thus far. We do not go back to the cardiologist until December 28th. Before then, Dr. Goel plans on conferencing with Dr. Huddleson, the surgeon, about when they think surgery could or if it will take place. Dr. Goel is hopeful that the enalapril will lower the pressures enough to get us to the Glenn. He is thinking that her Glenn is not too far off. He said yesterday that he was looking at the first week in February. However, he needs to discuss all of it with Dr. Huddleson.
So we are just waiting it out.
As if the doctor's appointment wasn't enough.
Ruthie had a visit from our health home care nurse, Angie, who needed to give her an RSV injection:( So Ruthie received her injection in the house which was nice because we didn't have to go outside again. On the other hand, my poor little girl had to get another shot this week (5 real shots total; 1 oral) and in her own home. The nurse said that she feels so bad having to give shots in home because that is the baby's safe place. But alas, Ruthie did much better in the afternoon after a long nap.
Fun Time
To celebrate Ruthie's birthday and to put both of us in the holiday mood, we made cookies yesterday. Ruthie helped me so much. She sat on the counter and gave me an audience to sing to and even patronized me with a few laughs and lots of smiles. And of course she gave me kisses which added to the sweetness of the cookies. It was really fun hanging out and just baking away. Ruth is such a great baker. Oh and a good cook. She has been helping Mommy cook a lot this week.
We sure had an eventful 4 month old birthday yesterday. I plan on posting pictures later this weekend.
As all CHD parents know, it is a rollercoaster we are on. Yesterday had it's highs, it's lows, and of course it's upside down moments. I am just thankful for it all. I am really trying to cherish each moment, good or bad, happy or cranky. We never know what tomorrow brings, so enjoy today!
Heart hugs!
Ruthie, Laura and Josh!
No comments:
Post a Comment