What was supposed to be a short update :)

Susannah had a cardiologist checkup this week and four weeks ago. The one four weeks ago was fine, no noticeable change on the ECHO. Her heart rate was 90's for the EKG and then 120's for her Echo. She slept through the echo which she had done so far. She has a tiny ASD and a tiny PDA which he's not concerned about right now. He said her weight gain wasn't as well as they'd like so come back in four weeks which brings us to last week.
The EKG was fine, there is some dropping in and out of the higher heart rate from the WPW syndrome, but her "escape" rhythm is usually in the 80-90's which is "good" for heart block, so he's fine with that. The Echo went all right. She cried through a lot of it this time, which was the first time for that. I knew it would come sooner or later, but was hoping for later! :) She has to be still and is a little restrained, which she doesn't like. He still said her weight gain wasn't as much as they would like, which to me is "Same song, FIFTH verse a little bit louder and a little bit worse!" Every doctor I've ever had for all the kids has been worried about their weight gain. In Susannah's case it could be due to her heart "exercising" too much and thus burning too many calories causing slow weight gain. The pediatrician has been pleased with her weight gain thus far. Their scales differ and I've only been keeping track of the pediatricians weights, so I need to get the Cardiologists weights and compare them. That's beside the point. Susannah has been struggling a little with taking her bottles where she will suck hard for a few sucks and then push it out and breathe, so we were a little concerned and mentioned it to him because he always asks about that. He asked if she was sweating while doing this and she isn't, so he didn't think it was because she was working too hard. I think based on our concern and her "poor" weight gain (I left a little confused), he wanted to start her on a diuretic. I've been carrying the weight charts of the other kids in my diaper bag in case I needed to plead my case, so I offered to show them to him, so he would believe me that they've all been in the low percentile. I'm very hesitant to start her on medication when it's not obvious in any way that her heart is struggling, and I'm not convinced the "poor" weight gain is not genetic. From what I see on the growth curve that he shows me she looks perfectly normal (for my children) and is gaining at a fairly consistent rate. He had mentioned increasing caloric intake before, so I asked him about that and he wrote me a prescription for Human  Milk fortifier and gave me a sheet on how to increase formula calories. We're supposed to go back in four weeks for a weight check. I looked into the Human milk fortifier, and it's rather expensive, so I don't think I'll be getting that since I'm not convinced she needs it. I might do the formula increase, but she only gets maybe 2-4 ounces a day of formula, so I'm not sure it'll matter all that much. Anyways, prayers would be greatly appreciated for wisdom on how much to push back with the weight thing. I don't want to do anything that would cause her heart harm, but at the same time I don't want to do something that's not necessary just because my kids have a lower weight gain than most. The rest of the visit was fine. The ASD and PDA are still there (he's hoping they'll eventually close on their own). The only new thing was that one of the valves has mild to moderate leaking. It's had a little bit of leaking before that he's mentioned, but he's never called it mild to moderate. I'm guessing it would be the valve that is with her right ventricle that is functioning as the left ventricle (because it's all mixed up) because of the higher pressure. He told us that at the very end and I was a little frustrated and confused by that point that I didn't ask questions.
Since that visit, Leigh has found that when she has a room temperature bottle (or warm) she doesn't do the breathing funny thing like she was when she eats. So now we're thinking maybe she doesn't take it as fast and easy because it's too cold! Will wait a few more days before we decide for sure! :)
She's growing fast and is a really good baby! She's such a sweetheart. She is rolling over now, smiling at all her siblings, "talking", almost giggling, sucks her thumb to sleep, sleeping through the night (which none of the others did until they were about a year old), and very interested in the world around her!

 Three months old

 

 

All the munchkins together

....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.

 with the Holter monitor



 Josiah and Timothy playing with Susannah.

Yes, she did get whacked in the head once or twice while Timothy was cheesing.

She just cried for a second, and then watched them some more.