Baby update!

November visit: PDA was larger, Dr thinks it might be more significant than he originally thought. Weight gain still not as much as he would like. Looked at how much she was eating a day and said her intake is not enough to gain weight, so he upped her calories again and started her on Lasix. Had a weight check a week later and it was OK.

December visit: Weight gain was ok, but she had dropped off on her feeding and was eating even less than the previous month. He's concerned about the PDA causing increased pressure and other things and causing her heart to work too hard. Started her on Enalapril which is a blood pressure medicine to help decrease the pressure in her heart. Presented her case to the pediatric heart surgeons at Joe DiMaggio children's hospital to see if they recommended surgery now or later. Heard back yesterday and they think it would be beneficial for her to go ahead and have the PDA closed sooner rather than later. They're supposed to call sometime next week to schedule a time for January. They have a smaller device that they're using now on little ones that they plan to use for her as well as a smaller catheter that is more flexible. The dr. said that would be better for her due to her dextrocardia and abnormal heart pathways. The hospital doesn't get those until January, but he sounded like that's what they would be using. He thought it would be early January, but depending on scheduling and such I wonder if it would be mid to late January before her surgery would be scheduled. They would do it like a heart cath by threading a catheter up the femoral artery vs. going through her chest. He says it would be outpatient, but with her being so young, we would probably stay overnight. She was also in heart block the whole visit this time with her HR in the 70's.


From our perspective, Susannah is growing way too fast! She does not seem to be in any distress at all and is a very happy and smiley baby! She is close to sitting up on her own and gets up to her hands and knees and rocks back and forth. It won't be long before she'll be crawling! Her first tooth poked through today!! She's still doing pretty well sleeping through the night. She has started getting up once during the night either at 3am or 6am, but it's not every night.

 5 months old!!

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

More school pictures

Busy, busy, busy!!!!

Well, a lot has happened since my last post. I have sat down several times just to write about our day and things going on, but haven't had enough time to even get started!!
Aunt Deborah got to come visit again the last partial week of July, first partial week of August. We had fun, and she played a lot with the kids. She brought them a sprinkler toy for the yard and played in it with them several times. They absolutely loved it!!

This is one of my favorite pictures from the week. It captures Emily's personality so well, it's hilarious!! She is by far our most wiggly child, and has never been able to sit still. She hardly ever walks anywhere in the house, she's always going too fast and crashing into things or falling down and getting hurt, but she never lets it slow her down. I feel like I'm always telling her to slow down, or be careful. At times it can be a little frustrating, but I have learned to accept that's the way she is and wouldn't have her any other way!

Mom and Dad and Deborah left the first of August, so we started school on Monday, Aug. 5th. So far I've been very pleased with our "classroom." We painted one wall a fun green color, hung cabinets on it, and put two banquet(?) tables along it with the idea that we could have 4 "schooling stations." It's working out very well. At the moment I have Luke and Emily at opposite ends just to help them focus, but as they get older and I add kids to that table, I'm planning to put an older next to a younger and the older should be able to focus fine, and not get distracted by the younger. (that's my theory anyways) I have each kids books(consumables and teacher stuff) in the cabinet right above the kid, so I can easily get what I need. I'm working on filling up the other cabinets, mostly with extras supplies, craft stuff where I can easily see it and get to what I need, stationary, and other school curriculum, etc. for the younger years. Josiah and Timothy's desks and my "teaching chair" are set up on the opposite wall in a corner. I'm not 100 percent pleased with how I have my stuff arranged that I need to access often. I'm still playing around with that and trying to figure it all out. I think we're getting close. :) The other wall I just have toys along. One day I would like to put our loveseat on that wall, when we get a new couch, etc. for the front living room. My idea is to have it be the family/school/play room. Right now it's mostly a play/school room. I want there to be a comfy spot for reading or visiting with company and such. I have the desire to be extremely organized, but I lack the time, space, creativity, and money too be too weird about it. :) I also save too much junk. :) So I'm trying to carefully fill up my cabinets, and closets as we unpack so I don't have to redo it in the near future. Yes, we're still unpacking. We have quite a few boxes in the garage to go through. Back to school....School is going very well. We have finished four weeks now and the kids are doing very well. Josiah is in K-5 this year and I'm teaching him. The first few weeks for him we've done extra because a lot of it is review that he learned last year. We didn't finish all of our K-4 stuff because I got behind because of the pregnancy and moving and such. We were well over half way so I didn't worry about it. He was struggling at the end to sound out short words. He did well with blends, but just couldn't seem to get the hang of putting it all together. After we did school for about a week I pulled out one of his books that we didn't get to last year and he was able to sound out the words just fine. Everything finally clicked in his little brain, so I was glad I didn't push him last year. He's been doing well so far and some days asks to do more school. We put Emily in video this year for 3rd grade and she absolutely loves it. She participates quite enthusiastically. Sometimes we have to have her use her headphones so that Josiah and I can hear each other! Luke is in 4th grade and is doing well. He's not so keen on the participating out loud part, but he seems to enjoy it other than that. He uses his headphones most of the time because I can't get his computer loud enough and he gets a little annoyed with Emily being too loud. He can't hear her with his headphones on, so it helps him to concentrate a little better, too. Timothy usually markers while Josiah and I do school. I must say that washable markers are worth the extra money!! They wash off his skin so nicely without any scrubbing!! He doesn't usually marker on himself on purpose, but it inevitably happens. Susannah usually sleeps in her swing while we school. Josiah and I are usually done by the time she wakes up, so it works out nicely.

 Josiah and Timothy's desks

 both sets of desk and the swing

 Emily and Luke's "desks"

The toy wall :)



....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!!!!!!!

Update and Decisions

Last Friday was quite an entertaining day! We had our high-risk doctors visit first thing in the morning to recheck the fluid that was around the baby's heart. It was still there and the doctor was concerned about it so he called the Cardiologist to see what he wanted to do. While we were still there the High-risk doctor said that if we were 38 weeks along it would be a cut and dry decision to go and deliver. Before I even left the office the cardiologist office called to make an appointment to fit me in later in the afternoon. So I left the office under the impression that this was not good and we would possibly be having a baby sooner rather than later! I am so glad I waited to call people (mostly my parents) until after the cardiologist appointment because I would have had them coming down the next day. :) At the cardiologist they did the ultrasound of the baby's heart and they weren't finding any pockets of fluid. There is a very thin layer of fluid between the baby's heart and the outside lining (pericardial lining???) and the doctor explained it that when the baby's heart contracts and you take a still picture of it (which is what the high-risk doctor does) it looks like a pocket of fluid has built up, but as the heart expands it spreads it out and everything they were seeing at the Cardiologist was within normal limits of what could possibly be there. It didn't sound like there should be fluid there, but apparently there is a small amount that is considered to be normal. So he was greatly relieved and said we were good to go until I went into labor. So I went from thinking we were having a baby within a week to having 3 1/2 plus weeks left. It was a rather crazy day! I had Leigh meet me over there because I didn't want to have to decide when to have this baby by myself, but it turned out to be unnecessary, which was good. So we went to a BBQ restaurant for dinner since our anniversary was the next day. It was a nice relaxing end to our hectic day.

Our OB visit was Tuesday, and it went well. Leigh went with me because he hadn't met the dr. before and we went planning to ask him to make a decision regarding the delivery. The cardiologist was still saying natural was fine, but the high-risk doctor was recommending a cesarean. So our OB looked things over and he called the high-risk doctor and due to concerns about the baby's heart rate dropping during labor and delivery, and not getting enough oxygen to the brain, he also recommended a cesarean.

So, our C-section is scheduled for July 3rd (39 weeks) at 9:30 a.m. I don't really want a C-section, but I am comfortable with the decision and understand the concerns involved, etc. It's also kind of nice to have an end date. I've gone past my due date with all the others and that last week seems to last forever! :)

We went to the high-risk doctor this morning and everything looked the same. He said things were stable and we'd see him next week.

While we were at the high-risk doctor, he apologized for having us come in every week, and mentioned that I've probably been to the doctor more for this little girls pregnancy than I was with all the others combined. I agreed that I probably have. After thinking back over the past 17/18 weeks and all the ups and downs and puzzlings and questions and such, I feel very thankful for our baby and the problems that she has. I know it's still wait and see how she does once she's born, but it could be much, much worse. Our ups and downs have been minor compared to some of the life or death ups and downs that a lot of couples experience with their little ones along with constant monitoring, hospitalizations, bedrest, etc. I'm also very thankful for both the doctors that have been keeping a close eye on our baby. The high-risk doctor is a little over cautious I think, but I would much rather that, than him not call the cardiologist and something be really wrong.

God has been so good to us, and we feel very blessed.

Looking forward to meeting our little girl in TWELVE days!!!

Funny sayings

The kids often have quite entertaining conversations and such. A lot of times I listen from another room and giggle to myself because they're so funny. The other day, Leigh and Josiah had an entertaining conversation:
Leigh (in the kids bathroom): "Who put all this water on the floor?"
Josiah walks in: "Not me"
Leigh: "Did Luke put all this water on the floor?"
Josiah: "No."
Leigh: " Did Emily put all this water on the floor?"
Josiah: "No."
Leigh: "Did YOU put all this water on the floor?"
Josiah: "No, Timothy did it."
(Note: Timothy has to climb onto the counter to get to the sink and turn it on and then he gets stuck and doesn't think he can get down, so he hollers until someone rescues him. He hadn't been on the counter that night.)
Leigh: "Did you SEE Timothy put water on the floor?"
Josiah: "No."
Leigh: "Then how do know that he did it?"
Josiah: " Because the GROWN UPS wouldn't do that!"
Leigh: " Who are the grown ups?"
Josiah: "You and Mommy, and Luke and Emily and me. That's the grown-ups."
Leigh went on to explain who the grown-ups were and had Josiah help him clean up the water. It was hilarious. It's funny to me how Josiah thinks he's so much bigger than Timothy. Kids are funny!!

A FUN DAY!

We had a very fun day on Monday. First off I went to the high-risk doctor and that went fine. The appointment was for 8:00am so I asked Leigh if he minded staying with the kids and going into work late, and he was fine with that. The high-risk doctor is 5-10min from our house and it was a quick appointment, so I was home by 8:30, which was nice. I had the kids pick up the living room and family room and then they got their swimsuits on and took them to a splash pad park thing not far from the house. There was one other day I was going to take them, but we drove by and it was packed with kids, so I thought if we went in the morning there wouldn't be too many other people. There were a couple other kids there when we got there, but by the time we left the parking lot was full and that little place was hopping! They seemed to have a great time! Timothy played on the little playground area while the others played in the water, and it wasn't until the end and I made him get in that he finally got wet and enjoyed the water part too.

After the water park we came home, they got baths, ate lunch, and then we watched a movie together. After that it was nap time and then supper time. After supper I took Luke and Emily to the library's summer reading program kick off. THAT was quite entertaining! They held it on the front lawn and had a DJ playing loud annoying music, a photo booth, a goody bag and then they had the kids hula hooping, doing the limbo and the chicken dance!! It was hysterical. Luke and Emily had  a great time because they got to learn how to hula hoop! Anyways, when it was almost over we went inside to check out some more books. I kept waiting for them to do something more organized, but it was basically just playing! Emily was really cute getting her books. It was only the second time we had been to this library, but she knew right where the books were that she wanted to check out and had them ready to go in under five minutes. Luke was still picking out his first one! :) This library is the Plantation library and isn't far from our house, so I'm hoping that we'll get to it more often since it's not out of the way.
Over all the kids seemed to really enjoy themselves!

Monday Update

At our high-risk doctor visit on Monday, he just did a biophysical profile and checked the little bit of fluid that was around the baby's heart. It had stayed the same, it hadn't increased or anything, so that was good. It actually measured a teensy bit less. Her breathing movements, amniotic fluid, etc were all good, so she seems to be tolerating everything just fine!! It was a good visit and quick! We go back to him on Friday and if everything looks the same, it'll just be weekly visits like planned before the fluid thing. That's all!! :)

"Quick" update

We went to the high risk doctor on Wed, May 29th, and the baby's heart rate was in the 80's and so he wanted us to get into the cardiologist within 48 hrs, so we went to the cardiologist on Thursday and it was confirmed that our baby girl now has Complete Heart Block. We went back to both doctors a week after to see how she was handling the lower heart rate, which was this Thurs. and Friday. At the Cardiologist on Thursday, everything looked good, but on Friday at the high-risk doctor, there was a little bit of fluid around her heart ( which is Not good and can be a sign that she might be going into heart failure, in which case we would deliver early) so we go to see him again on Monday (June10) and then on Friday of this week.  The high-risk doctor also does a Biophysical Profile and she has gotten a perfect score on everything they look at with that - breathing movements, tone, amniotic fluid, and wiggling - so that's good. We will also be seeing the high-risk doctor every week from now on. The cardiologist on Thursday said he was okay with a natural delivery, the high-risk doctor, however, does not seem okay with a natural delivery and thinks we should do a cesarean due to the lower heart rate and the natural heart rate drops that occur in labor and concerns with the baby not getting enough oxygen to the brain during labor and delivery. So we'll see what they decide and hope they end up on the same page, whichever way it is! My OB seems okay to go whichever way the cardiologist and high-risk doctor recommend.
We went on a tour of the Labor and Delivery floors as well as the NICU and PICU at the hospital today, so we have a slight clue of where to go and where everything is located. L&D and the NICU are on the 2nd floor, the PICU is on the 4th floor ( and only certain elevators go there) and postpartum is on the 8th floor!
We're praying the fluid either stays the same or goes away and that she will continue to be stable until it's time for her to be born. Trusting in the fact that God's ways are best and He knows every step of the way.

Projects

So, Emily's been needing some new dresses and skirts to play in, she has a few she's about outgrown. I've been hesitating to put them away because they're her favorite, and then she has a couple that have just had it that are only allowed to be worn around the house. So she needed a few things to wear out and about and to church on Wed. I got ambitious and made her four dresses, two skirts and one pair of shorts. I figured if I'm going to bother cutting one out, I might as well cut out a few more!

 I added the pink ribbon, just to add a little something. I thought it turned out cute!





We went to Jo-Anns and she picked out the purple butterfly material and we bought the jean material. The turquoise I had found on sale for a super good price in the fall and the green was some that I think my mother gave me, as well as the blue for the skirt. The other skirt was a lightweight jean material from a little I had left from another project.

The green dress was a variation. The underarms ended up a little too big, so I had to take them up a little, but the sleeves were cute!

 

For the jean dress, I added some daisy buttons to it, just to brighten it up a little!

 

 

 

While I was at it and had ribbon, I made some hairbows to match some of her dresses and I made little ones for the baby!

 



 

 



The daisy one goes with the jean dress, and the pink one goes with the turquoise dress, (of course they'll go with other outfits, too) the patriotic one was just because I had cute star buttons and red and white ribbon!!

 

 

For the bows I followed the pattern at this blog  http://www.theribbonretreat.com/blog/ribbon-flower-bow.html  .  They were super easy, and I thought they turned out cute. 

Changes

Kids are funny! And it's amazing how fast they grow up and change. Some of Luke's changes started last summer, when he started going to the orthodontist. He had to get an expander to increase the width of the top of his mouth because his teeth were super crowded and they sat a little bit inside the bottom teeth. He didn't get the actual appliance until Nov/Dec and then we turned it twice a week with a little key until a couple weeks ago, when he got a reverse headgear! The reverse headgear is to help slow down the lower jaw growth ( because it grows faster than the top part). Part of me wondered if we were starting all of this too early, but I can see how he definitely needs it. We're in what they call the first phase of creating space and then we won't do anything for a year or two and then start the second phase which would consist of braces and straightening, etc. I can tell when he talks and spells things that his lower jaw juts out too far. It's all very interesting.

with his reverse headgear

 

 

 Before the expander

 

 

After the expander, you can see how there's a little more space between his teeth. He did lose one of his teeth (on his right) which makes it look like more space on that side.

 

 

The other change that he and Emily both had were that they both got glasses!! Luke was VERY excited about glasses, and it turned out Emily actually needed them more than he did!

 

I think they both look cute with them!!


On another note, today was our last day of school!!!!!!!!!!! We went to the library and got everyone library cards for the first time! (except for Timothy) We made pizza and dessert and watched a movie while we ate supper, AND Leigh got to come home early from work because it's a holiday weekend and they sent everyone home! So it turned out to be a very fun last day of school!!