Speculations from South Florida: ....Continuation

We got to go home on Saturday. We went home with a bili-blanket, that we were supposed to put on her for 12 hours a day. We tried to put it on her at night while she slept and it worked out all right. The neonatologist wanted us to get a bili-check on Sunday and see the pediatrician on Monday. I called my pediatricians office to see if they did bili-checks and if they were open on Sunday. They were open on Sundays, and the person on the phone told me they did bili-checks. So we get there Sunday and went ahead with the checkup so we wouldn't have to go Monday, too, and the Dr told me that they don't do bili checks, but her color looked really good and just to tell the neonatologist that. And yes, the Neonatologist called in the afternoon to make sure I had taken my baby to the Dr, and she was fine with what the Dr. said about the bilirubin, which I was glad of, otherwise we would have had to go back to the hospital for a bili-check. We had a follow-up with the Pediatrician on that Thursday, July 11, and it went well. She's already mentioned that we'll follow Susannah's weight closely because sometimes babies with heart issues need a higher calorie intake because they burn more calories while they eat and such. We've kind of stuck with the schedule and such that the NICU had her on with giving her breastmilk and supplementing some with formula. She's mostly getting breastmilk, but she does get a little formula, too. I've been writing it down because all her doctors ask how much she's eating at a feeding, and I have no idea. We've nursed a little bit, but plan to work on it more once school starts and the doctors visits slow down. It makes me nervous that they're going to follow her weight closely because my other kids were all slow gainers and were always in the 5-10th percentile if not below. So far she's doing great and was 6pounds 15 ounces at her two week checkup.
After the Pediatricians visit on Thursday we had a Cardiologist appointment. It went really well, they did an EKG and a ultrasound of Susannah's heart. When they did the EKG I asked the lady if it mattered which side they put the leads on since Susannah has Dextrocardia (which is her heart facing the right instead of the left), so she did an EKG with the leads on the left and then one with them on the right. After they do the EKG, they do the ultrasound and Susannah slept through the whole thing, which is usually 30min. to an hour! They had been a little confused about her heart rate because the first day she ran in the 80's-90's and then after that she had a normal heart rate, but it was obvious on the EKG's and U/S they did in the hospital that she was still in heart block. Based on the EKG they did in the office where they put the leads on the right side, the Dr. was able to figure out what was going on. He came in while the U/S tech was doing the ultrasound and said she has WPW syndrome, it's usually bad, but for her it's really good, and then he left so they could finish the U/S. He was so excited that he figured it out and that it was really good for Susannah. It was kind of funny. So Susannah also has Wolff-Parkinson-White (WPW) Syndrome, which is basically the heart forms an accessory pathway. In a normal heart it can cause tachycardia, but for Susannah, it allows her to have a normal heart rate, which is good. It can drop in and out, so he sent us home with a Holter monitor for 24 hours to see how often it drops out and to see how her heart does under stress (ex. eating/crying). He called a couple days after we dropped it off and said out of the over 200,000 heart beats it only skipped a total of about 10 beats, which is SUPER! He's not concerned with it dropping out too much because her "backup" rhythm is high (80's) for heart block. He was also pleased with the Holter test because it showed that her heart rate at one point got up to 188 which shows that it was compensating for a "stressful" activity.
We have since had another pediatrician visit and another cardiologist visit and they both went well. We go back this week to the pediatrician for a 4 week checkup and we go back to the cardiologist in 2 1/2 weeks (three weeks from the last checkup). I really like her pediatrician. She's very thorough and seems on top of things
The last test we were waiting to hear back from was the chromosome test from the geneticist. I was supposed to follow-up with him this past Wed., so I called and had to leave a message. He called Thurs. afternoon to let us know that all of Susannah's chromosomes are NORMAL! That was good news.
So we're at home, loving on our sweet little blessing. The kids absolutely love her and so far she's been a really good baby. Hopefully that will continue. :) Mom and Dad have been down for about three weeks and have been a tremendous blessing and help to us all. Dad and Leigh finally got my cabinets hung for my classroom, so it's coming together. I'll have to get pictures up one day. Itching to get school started and into some sort of routine. We had a special time the weekend Susannah was born Rachel and Mark were in Orlando, so they came down and Deborah got a personal day with July 4th and she came down, so they all got to see her little bitty. She's Mark's first official niece. :) He was really cute holding her and even reserved a feeding time! Deborah gets to come down this week for her vacation and then she and Rachel are coming again in September, I think. FUN, fun, fun!!
Thank you so much to everyone who have been praying for us and Susannah!! We feel overwhelmed and undeserving of God's graciousness to us. Although the future is unknown, we know God's in control and are resting in Him.