My Boy!

I guess I'll start from the beginning.  I went into the hospital at 7:30 on Sunday morning, the 30th of October to be induced.  After a long day, Christopher was finally born at 9:51 that night.  I only had to push twice!  He cried right away, so I thought they might hand him to me for a minute, but they passed him right through the window to the NICU.  Luckily, the NICU nurse took our camera so that we could get some pictures of him.

This is what he looked like after being washed up and transferred to Primary Children's Hospital. They started him on Prostaglandin right away to keep his ductus arteriosis open.  What we didn't know was that it tends to make babies a little grumpy.  He was fussy for the 4 days he was on that, but I got to hold him and sing to him and he seemed to really like that. 

We were able to bring the girls in before his surgery so that they could meet their new brother.  They loved him immediately, but they really wanted him to come home.

For those who may not know, Christopher was born with Hypoplastic Left Heart Syndrome.  In order to survive, he had to have an operation called the Norwood Procedure performed. On Thursday, November 3rd, Matt and I got up at 5:00 and went to the hospital to hold him one last time before his surgery.  We walked with him while they wheeled his little bed into the operating room, and when we got to the yellow line they asked us to give him a kiss and head to the waiting room.   We sat there for about 7 hours, getting updates every hour or two.  I can't describe in words how it feels to be told that your newborn baby is on a heart bypass machine.  It was the longest day of my life.  This is what he looked like when we finally got to see him again.  He had 3 chest tubes, a drain from his abdomen, several different IV lines, pacer wires, oxygen monitors, a catheter, and, of course, he was intubated.

 

 Here you can see his medication pumps on the left, the ventilator on the right, and the chest tube drains on the bottom. So much stuff for one little baby!  We got a call early Sunday morning asking for permission to close his chest, as it was left open to allow some room for swelling. One would think that giving permission to open your child's chest would automatically give permission to have it closed, but apparently it doesn't!  A few hours later we got a call saying that they closed him, but that his little heart just couldn't pump well enough, so they had to re-open him.  That was a huge disappointment.  We waited another 3 days while they gave him Lasix to try to get most of the swelling down and they successfully closed him on Wednesday.

Here he is right after they closed him.  They took advantage of the extra sedated state to insert a

nasojejunal tube so that they could begin feedings the next day.  So far he has tolerated the food very well and really seems to be on the mend after a pretty rough start.

Today they removed the chest tubes and decreased the ventilator a little bit more.  We're hoping he will be extubated in the next couple of days so that we can hold him again.  In the meantime, we are enjoying the fact that he isn't so sedated so he can look at us.  He smiled for us today, and I took a video of him looking at us, but once again Blogger isn't letting me put videos up. 

Halloween 2011

Since I had a baby the night before Halloween, I had to miss out on the festivities.  Luckily, I had the girls' costumes all ready to go and my mom and husband stepped in to make it a fun night for the girls.  They filled their buckets to overflowing and had a great time.  Here is Wonder Woman and the pumpkin.

We were able to carve pumpkins the night before I went in to be induced.  Shannon did her own, and Leah helped me with hers. 

 The PICU got costumes for all of the kids, and this was Christopher's.  They just set it on top of him since it was too big, but it was still pretty cute!

Shannon's 5th Birthday

Shannon had a very fun birthday party. She wanted to have her cousins and some of her friends over and they spent most of the day in the pool. Here she is with her She-Ra cake.Blowing out the candles.

She wanted a Wonder Woman costume, and I actually found a modest one on e-bay . I don't have any pictures of her wearing it yet, but she is going to wear it for Halloween, so there will be pictures soon!

She got a Cinderella doll and decided to dress up just like her. Of course, Leah had to pose for the picture as well!

Unrelated to her birthday, one night when she was supposed to be sleeping I found her in her room writing on this. She wrote this completely by herself. It says "I can learn my letters. I will learn the letter A." I think this must be something written on the chalkboard in her classroom. Smart girl!

First Day of Kindergarten

Shannon started all-day Kindergarten yesterday. She is on a modified year-round schedule, so they start a month early and have a 2 week break in the fall and again in the Spring. She has been waiting for this day for a long time and it sure crept up on me! Here is the excited girl with her Dora backpack. Here she is standing in her class line getting ready to go inside.
Her teacher had the class sit in a circle so that she could tell them that they needed to be quiet while walking in the hallways.
All lined up and ready to go after one last good-bye. She is the one waving at me in the middle. She didn't cry at all, and neither did I. She was too excited to think about anything else! She had a great first day even though she is still recovering from a cold. Leah did just fine at home without her. She was sad when we got back home after dropping off Shannon and when I asked her why she was crying she said, "I don't want to be home! I want to be at school!" She enjoyed her one-on-one time with me and the house was sure quiet!

Baby Number Three!

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.

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!

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!

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!