....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.

Better late than never????

Sorry it's been so long since I've updated. We got Susannah's last test results back yesterday, but first I'm going to backtrack a bit. The last update before Susannah was born was from our Dr's visit on June 21st. On Thursday, June 27th we went to the high risk doctor and the baby's heart rate was normal and it had a normal looking pattern. The doctor was so excited for us, because then we wouldn't have to have a C-section if the baby's heart rate was high. He still wanted to go ahead and induce on the same day that the section was schedule for since the baby was doing well and her heart rate was high. He called the Cardiologist to let them know and they had us come in the next day on Friday. The cardiologist was very puzzled because heart block is not supposed to just go away, but what we were seeing on the ultrasound showed that her heart was beating in a normal rhythm and at a good rate. So we pondered the news over the weekend and I tried not to get my hopes up too high in case we went in on Wed. to deliver and her heart rate was low I knew they would go back to doing a C-section. On Monday, I went in for my regular OB visit and the nurse tried to find the baby's heartbeat. She listened to something and got a rate, but I couldn't tell what she heard. She told the Dr. that the baby's heart rate was in the 80's and was the same as mine. (My heart rate usually runs in the 90's) So my OB called the high risk Dr. and the high risk Dr. wanted him to take the baby's heart rate and then take my heart rate to make sure our baby was still alive. (Yes, the OB told me this.) Well, I knew she was fine because she had been wiggling the whole time we were there. First, he had to find a watch with a second hand from one of the nurses, and he took the baby's heart rate, which was 80 and my heart rate which was 120. So he let the High-risk Dr. know and he said just stick with the C-section on Wed. and be done with it. :) That was our entertaining weekend before our sweet baby girl was born!

The last post was about Susannah's birth. She did great. The C-section wasn't as bad as I expected and the recovery's gone pretty well. It kind of tickled me because all these people prep you and get you ready for the C-section, introduce themselves to you and then you get in the room for the procedure and you can't recognize a single one because they have caps and masks on. They were all really sweet, the anesthesiologist(?) was a student and she did a great job, she was the one who let me know what the doctor was doing. I had her on my right and another lady on my left, I don't know who she was, and I have no idea where Leigh was. I asked my doctor if he could take out some fat, so he showed me a little piece he took out! :) At the very end he showed me another little piece.  It was quite entertaining. I got to watch them weigh Susannah and clean her up a little, and they brought her to me for a few seconds before they took her to the NICU. They had told us it could be up to an hour before Leigh could go see her, but they came back pretty quick and let him go to her. He took pictures for me and came back and showed them to me while they were still sewing me up. They put dissolvable staples in me (which I didn't know they made) and glued me shut! (sorry if that's TMI) I was fascinated. I found out I DO NOT like morphine. It made me itch for three days and I couldn't sit up straight for several hours because it made my head feel funny. They offered to give me Benadryl, but I didn't want anything else to make my head feel fuzzy because I wanted to go see my baby, so I refused to take it. I finally got to go see Susannah at 4:00a.m. the next morning. It was quite a trek from the 8th floor down to the NICU on the 2nd floor. We tried to make it to all of her feedings. The first nurse was really nice and let me try to nurse her for as long as I needed, but most of the other ones wanted her to eat so much within a certain time, so that it didn't mess up her "schedule," so I always felt kind of rushed. It was a little frustrating, especially when they keep telling you if she doesn't eat so much, then we'll have to put her back on IV fluids. There was one nurse that didn't even let the kids touch her when they visited because she was sleeping. I wanted to remind them that Susannah was in the NICU for OBSERVATION, not treatment, and with four siblings at home she's going to be disturbed, and I don't do the whole schedule thing where they can only eat every three hours, I do more of a routine thing. And a lot of breastfed babies usually start out eating between 1-2 hours, if for nothing else just to get the milk to come in. If I hadn't of had a C-section they would have probably kicked me out, because I would have annoyed them to no end. They have "touch times" every three hours where they do their assessment, change the diaper, and take the temperature and then they feed them and then they have to sleep until the next "touch time." It makes sense and works well for preemies and sick babies I'm sure, but it was a little frustrating to feel like I needed permission to pick my baby up and feed her. We made it and I knew that it would probably annoy me, so I was prepared. It was so good to get home though and let the kids hold her and touch her as much as they wanted whether she was sleeping or not! :)

Well, since this is getting long I'm going to do a
to be continued.........

Hopefully I'll get to it tomorrow...

Susannah Maxine

Susannah Maxine Riffel was born July 3, 2013 via C-section at 10:05 a.m. She was 6 pounds 11 ounces and was 18 1/4 inches long. She transitioned well without any problems and has been doing GREAT!! Her heart rate has actually been higher than it was in utero, which is good. She had two ECHO's and EKG's in the NICU and everything they saw was expected. We got to go home together Saturday afternoon. She's a little jaundiced, so we went home with a bili-blanket, but she looks much better today, so it's working. We are sooo thankful that she is doing so well and feel so blessed!!!!!!!