journey of a heart baby: moving pieces

Where to start, I didn't feel like we had a lot going on, but now all of a sudden it seems there are a lot of moving pieces.

First, we had our monthly cardiology appointment at the beginning of October.
When we got there Lucy was really congested and apparently to everyone at the hospital, a little blue. I didn't really realize she was so blue. But I guess it's like when you lose weight....the people that see you everyday don't notice a ten pound loss, but someone that hasn't seen you in a month notices immediately. So we bumped her back up to a half liter through the appointment.  Lucy had usual echo and EKG. I think so many would laugh if they could see the lengths we go to to keep Lucy quiet and happy through an echo. My dad is holding a toy that plays music in one hand and a toy that lights up in the other as I am trying to keep the pacifier in her mouth, make sure her legs stay relatively still, all while batting her hands away from any cords she could grab. Do that for forty five minutes and we're exhausted. The results however were great. Dr. Husayni is seeing increased function in her right chamber. They did see some narrowing in the pulmonary arteries which along with some congestion explains the blue-ish hue she was sporting. As for now, we started two more medications, both diuretics. This is on top of the one she is currently on. The reason for starting new ones is because the lasix can be hard on the liver, so they did not want to increase the dose. The second one they started (diuril) works well with the lasix, but can deplete the body of potassium, so the third one (aldactone) helps to keep the potassium in the body. We will follow-up in a week or so for some labs to make sure her potassium isn't too low. If the new medication doesn't help, we will go in for a catherization, ugh, overnight hospital stay. At that time they will decide if they can balloon the arteries or need to place a stent.....it is another wait and see situation.

Last Wednesday, an Early Intervention physical therapist came to evaluate Lucy. She found that Lucy is averaging about the same as a three month old. It looks like we will qualify, which would mean speech and physical therapy in home. Great for the winter so we don't have to take her outside. We have a meeting with the case manager and all the therapists this Thursday, so we will have a clear plan after that. Prior to the meeting, we wanted to complete a swallow study so we would have some information to provide the speech therapist. For those that don't know, a swallow study is like a x-ray video. The therapist placed Lucy in a chair (it looked like a roller coaster seat) and buckled her in. Then they try both liquid and puree and watch how she swallows. They watch for her tongue to press against the roof of her mouth, a swallow and the food to pass through to her esophagus. This is to make sure she will not aspirate. She passed! We got the go ahead to start trying puree foods. It's not going great, but we're just going to keep trucking along. After the swallow study, we had a short conversation about a g-tube. The difference is this tube goes directly into her stomach. They call it a button...and it will require surgery along with a three day hospital stay. Angela (our cardiac nurse) says if Lucy isn't eating all calories by mouth at a year, they would require it. We have the option to do it sooner and there could be some benefits.
    1. Vomiting will decrease
    2.   Irritation in her nose and throat will decrease
    3.   Eating by mouth could be more interesting
    4.   Her feedings can be done quicker
    5. Medication can be administered through the tube.
    6.    NO TUBE TAPED TO HER FACE

Can you tell which one is most motivating to me? I just want to see her whole face!!!!
On the downside, it is still surgery and another trip to the hospital.

Stranger danger has clearly set in as well. Just ask my sister, who got the joy of watching her and for almost the entire time Lucy cried. Since we can't take her a lot of places we encourage visitors! Just call to find out a good time and as long as you are not sick come on over. We can .not guarantee she won't cry, but we will try really hard to get a smile out of her.

Her new favorite thing is to hold her feet in the air, getting those abs strong.