Most, if not all of you know already that we are expecting our third child around November 6th. We went to the ultrasound to find out the sex, and we got to enjoy the fact that it was a boy for about an hour before the doctor came and told us that he couldn't see all 4 chambers of the heart. I didn't let it worry me, thinking it could just very well be the positioning of the baby. The next week we went to the pediatric cardiologist and had a fetal echocardiogram. That took an hour, and the tech told me that she couldn't quite see one of the things she needed to see, but that at least she had a diagnosis for us. That kind of made my heart sink. The doctor sat me down and told me that the baby had a serious heart defect, then told me all about how the heart works before and after birth. Then he turned to the next page that said "Hypoplastic Left Heart Syndrome," and I burst into tears. Having had worked in a NICU for a year, I have seen 2 babies with this condition, and I knew how serious it was. The doctor was amazing and spent about an hour explaining to me in detail about the three stage reconstruction that could be done to "fix" his heart called the Norwood procedure.
Since that day we have been doing a lot of praying and research, and we have come to the conclusion that we are going to exersize our faith in the Lord that we will be able to bring our son home. We have talked to various doctors and nurses, and here is what we know to expect so far:
This pregnancy is in absolutely no danger, and as long as my low-lying placenta gets out of the way (which it did with my other two pregnancies just fine), I will be allowed to go into spontaneous labor. Since we only live about 1/2 hour from the University of Utah Hospital, where I will be delivering, and since my labors have not been quick by anybody's standards, they see no need to schedule an induction. As far as C-Section, it would not be of any benefit for the baby (who we have named Christopher, by the way), and since it would only make recovery much worse for me they see no need to do that either. Anyway, I will deliver in a room at University Hospital that is connected to their NICU with a window, so that immediately after delivery he will be passed to the NICU team. I may or may not get to see him right away. They will start his IV and put him on Prostaglandin, which will keep the ductus arteriosis open (the "hole" in the heart that all babies are born with) so that he can continue to get some oxygenated blood. As soon as he is stabilized and ready to go, he will be transported over the sky bridge to the pediatric cardiac ICU of Primary Childrens Hospital. As soon as I am recovered and up to it, I will be able to go see him. They say about 20% of the babies that are put on Prostaglandin have apneic episodes, thus necessitating intubation. If that is the case, we will not be able to hold him, but we will still be able to touch him. Of course we are praying that he won't have to be intubated so that we can hold him, but we'll take whatever comes. He will have the first stage of the Norwood Procedure (google it if you are curious, as it is quite involved) within about a week of birth, and they say to expect about 3 weeks for recovery. He will only recieve IV nutrition before surgery, and will be fed post-surgery via an NJ tube. This is a tube introduced into the intestines, bypassing the stomach because it is better tolerated. He will then graduate to an NG tube, where the food will go into the stomach, and then to regular feeding. Most babies go home with at least the NG tube still in place. The nurse told me that they just don't seem to get the whole feeding thing yet. I laughed and told her that since he's an Emerson I am pretty confident he will figure it out! He will have the second surgury between 4 and 6 months, then the last between 2 and 4 years of age. There are many patients who have had this procedure done who are in their late 20s, but that is as old as the surgery is, so they don't know the long-term prognosis. I would imagine he will need a heart transplant at some point in his life, but we're just going to be thankful for whatever time we have and take each day at a time. He has every chance of having a normal life--serving a mission, getting married and having children, etc.
We talked to a genetic counselor and there is absolutely no know reason for this condition. It isn't hereditary, so no worries, and the odds of it happening are only about 2 in 10,000. I think that is all of the information I have for now, but I will be sure to keep you all updated! Thanks for reading.
Friday, July 22, 2011
Girls' "Camp"
I was called to be the second counselor in the Young Womens organization of our ward a few months ago, and was very excited to hear that camp would be held this year at the Marriot Mountainside resort in Park City. They were trying to entice more girls to come, and even though we only had 7 there, we still consider it a success. Matt came with me as one of the Priesthood leaders and we left the girls with a friend in our ward. We stayed for three days and two nights here:
Our first activity was to head up the mountainside on the ski lift. It was a really neat ride!
The purpose of going up the mountain is to get to ride the Alpine Slide, which is in this picture.
Here are some of the girls ready to go. There are levers to control your speed, and I took it kind of slowly since I was afraid of getting thrown off the track. The best part was watching the hundreds of ground squirrels and gophers popping up all along the track. I guess they live under it! One of them ran right toward the track as I was going pretty fast and I was sure I was going to hit it when it ducked right under the track .
The next ride was my favorite. This is the Alpine Coaster. It's exactly what it sounds like--a roller coaster that goes down the mountain.
Here are the girls, all ready to go! Each person sits in his or her own car and they track pulls you up the mountain. Once again, you control your own speed with the levers on the side.
Since I was securely strapped into this ride, I went really fast. I have to say, it was by far the most picturesque roller coaster I have ever been on. It was so much fun!
The next morning we went on a short hike up April Mountain. This was the view of Park City from the top. I have a video of the panorama, but once again, none of my videos will upload to blogger.
Here are the girls at the top of the mountian. Apparently it is a water tower disguised in a mountain. Pretty neat!
Our first activity was to head up the mountainside on the ski lift. It was a really neat ride!The purpose of going up the mountain is to get to ride the Alpine Slide, which is in this picture.Here are some of the girls ready to go. There are levers to control your speed, and I took it kind of slowly since I was afraid of getting thrown off the track. The best part was watching the hundreds of ground squirrels and gophers popping up all along the track. I guess they live under it! One of them ran right toward the track as I was going pretty fast and I was sure I was going to hit it when it ducked right under the track .The next ride was my favorite. This is the Alpine Coaster. It's exactly what it sounds like--a roller coaster that goes down the mountain.Here are the girls, all ready to go! Each person sits in his or her own car and they track pulls you up the mountain. Once again, you control your own speed with the levers on the side.Since I was securely strapped into this ride, I went really fast. I have to say, it was by far the most picturesque roller coaster I have ever been on. It was so much fun!The next morning we went on a short hike up April Mountain. This was the view of Park City from the top. I have a video of the panorama, but once again, none of my videos will upload to blogger.Here are the girls at the top of the mountian. Apparently it is a water tower disguised in a mountain. Pretty neat!
Since this was "Princess" camp, all of the girls wore formal gowns and were presented at a short ceremony in the lobby. Most of their parents were able to come up to see them and have a formal dinner with them. Four of these girls made their own dresses!
I guess I didn't take a picture of the pool where we spent most of our free time, but it was beautiful. There were 6 hottubs, all connected by little waterfalls. The suite that Matt and I stayed in had the biggest bathtub I have ever seen. It was very fancy, and very fun!
I guess I didn't take a picture of the pool where we spent most of our free time, but it was beautiful. There were 6 hottubs, all connected by little waterfalls. The suite that Matt and I stayed in had the biggest bathtub I have ever seen. It was very fancy, and very fun!Easter and Stuff
My friends Whitney and Jennifer came over to color eggs with us this year.
Here is the result. Shannon's is the prettiest one with all of the colors in the middle of the section on the right. She did a really nice job!
Here are the pretty girls on Easter morning after they found their baskets. Leah found hers right away hidden behind the couch. I swear she can smell candy from a mile away!
This was just a funny thing. Shannon was given a bunch of glowsticks from her Nanny and a little while after she went to bed she asked me to come look at what she had done. She made this person all by herself, complete with hair. It made me laugh.
Since we are expecting baby number 3 in November we decided to get Leah out of her crib and into Shannon's room. Matt went for a jog one day and came home carrying a child's bed. He said it was in someone's yard with a "free" sign on it, and rather than risk it being gone by the time he got the car back there, he just carried it all the way home. Leah loves her bed, but the first few nights they slept in the same room this is how we found them. I'm sure glad they are friends!
Here is the result. Shannon's is the prettiest one with all of the colors in the middle of the section on the right. She did a really nice job!Here are the pretty girls on Easter morning after they found their baskets. Leah found hers right away hidden behind the couch. I swear she can smell candy from a mile away!This was just a funny thing. Shannon was given a bunch of glowsticks from her Nanny and a little while after she went to bed she asked me to come look at what she had done. She made this person all by herself, complete with hair. It made me laugh.
Since we are expecting baby number 3 in November we decided to get Leah out of her crib and into Shannon's room. Matt went for a jog one day and came home carrying a child's bed. He said it was in someone's yard with a "free" sign on it, and rather than risk it being gone by the time he got the car back there, he just carried it all the way home. Leah loves her bed, but the first few nights they slept in the same room this is how we found them. I'm sure glad they are friends!
Birthday Party
I have tried to make a post for Christmas because I'm that far behind, but all I have are videos, and for some reason they are not uploading, so I will just move on. A while ago, the girls were invited to their friend, Kylee's, birthday party. It was at a place that had lots of rides and games and the girls had a blast. Here are Shannon and Kylee smacking the crocodiles.
Here is the party. Leah, naturally, really enjoyed the pizza while Shannon couldn't take her eyes off the princess cake.
This is Shannon wishing it was her birthday.
I have some cute videos of the girls on some of the rides, but they won't upload either. The funniest was when Shannon rode on the bumper cars and when she finally figured out how to make it go she ran into the wall and did a faceplant into the pillow on the steering wheel. She didn't think it was terribly funny, but she got right back to driving.
Here is the party. Leah, naturally, really enjoyed the pizza while Shannon couldn't take her eyes off the princess cake.This is Shannon wishing it was her birthday.I have some cute videos of the girls on some of the rides, but they won't upload either. The funniest was when Shannon rode on the bumper cars and when she finally figured out how to make it go she ran into the wall and did a faceplant into the pillow on the steering wheel. She didn't think it was terribly funny, but she got right back to driving.
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