Leah is 3!

Sorry, Lori, no pictures of the boy today.  I'm waiting until he doesn't have the NG tube anymore, and that should be in the next day or two.  I haven't fed him anything through it since Sunday, so give me a few more days of good bottle feeding and I will take it out and take some more pictures of him.

It was Leah's 3rd biurthday on December 3rd.  She wanted a Cinderella cake, and since we are simplifying everything around here because we don't sleep much, I just used a plastic princess that we got on a cake a few years ago instead of the Barbie that I usually use.  I did make an ice-cream cake for her, though.  She had a fun party with just us and one friend.  They had macaroni and cheese (by FAR Leah's favorite), ate cake, played dress-ups, and watched a movie.  Happy birthday cute girl!  Here she is blowing out her candles. (Yes, I finally figured out how to post videos again.  For some reason now, I have to "finalize" the video by saving it to my computer from the camera, opening it with Windows Live Movie Maker, and save it in there.  Kind of weird, but it works!)

Being Home

Christopher has been home since the day before Thanksgiving.  I went to the hospital to get him and spent all day there learning how to feed him and give him his meds and everything.   As soon as we got home we had the oxygen delivered, the feeding equipment delivered, and a nurse came and taught me how to use the pump for the feeding tube.  It was a pretty overwhelming day!  He came home on 6 different medications, so for the first few days I was very busy.  I had to refill his food bag every four hours, pump every 3 hours, give him aspirin once a day, lasix and zantac twice a day, propranolol 3 times a day, and I weaned him off of his methadone and ativan over the next four days.  Plus I had to change his diaper and console him whenever he cried.  We aren't supposed to let him cry very much because it wastes calories that he needs very much.  Babies after this surgery burn 150 times more calories than "regular" babies, so in order for him to grow he needs to burn as few as possible with things like crying and shivering.  I also have to mix Progestimil with my breast milk to add more calories that way.

   

He is currently being fed through an NJ tube, which goes right into his intestines.  They start this way in order to slowly introduce food and to make sure they don't aspirate anything because the swallow reflex is still weak.  Christopher's cry was so weak when he left the hospital that they didn't even bother with a swallow study because they are pretty confident that he would have failed.  Apparently the nerve that makes the vocal cords work is the same nerve we use to swallow, and that nerve very commonly becomes inflammed after aortic arch repair.  His cry has slowly gotten stronger (although it's still pretty weak), and he is scheduled for a swallow study on the 12th of December.  A speech therapist has been working with him and she thinks he is doing really well and will be able to pass.  She put a few drops of breast milk on his binkie to get him to salivate and practice swallowing, and you should have seen his smile!  Anyway, if all goes well on Monday the tube will be pulled back to his stomach so that we can start introducing food slowly that way, then eventually it will be removed and he will be able to bottle feed.  I really wish I could just breast feed him, but he needs the added calories of the formula, so I will continue to pump.

The girls have been begging to hold him, so after having them wash their hands really well, we let them hold him for a minute.  They were in heaven.  They just adore their little brother.

 

He had his first follow-up appointment on Wednesday of this week and everything looked great.  They took him off the oxygen (yay for fewer tubes!).  They also had me go down to once a day on the lasix, and I gave him his last propranolol this morning.  The first night off the oxygen his sats got a little low, so I put it back on him, but since then he has been right where he should be on room air.

  Here his is after his sponge bath today in his Christmas outfit that a friend gave us.  Pretty handsome!  (Lori--I squeeze him now.  It doesn't hurt him, I promise.) 

More Baby Stuff

This post is for the benefit of my very curious and, for the most part, medically-minded family.  While my mom was here she found these information sheets on the surgeries they will perform to "fix" Christopher's heart, and she thought they were interesting, so I thought I would share them.  They are kind of hard to see, so if you're really curious there is a great animation of everything here.The top picture on this one shows a typical hypoplastic left heart. The doctor drew on it as he was showing me how everything works.  Notice that the left ventricle is not formed, and the aorta is very small. The next picture shows what they did during the first procedure.  They open up the pulmonary artery and the aorta and connect them in order to make a bigger aorta, then they put in a shunt to get blood from the right ventricle to the pulmonary artery in order for the lungs to get some oxygenated blood.  When the procedure was first done, the BT shunt (colored in red on the bottom picture) was the standard.  The other option nowadays is the Sano, which is the black tube drawn in by the doctor.  That is the one that they did on Christopher because the doctors at Primary Children's believe that kids who get a Sano shunt "just do better."  Our cardiologist told us that it's a little scary because it cuts into their only good ventricle, but that the kids who have this type of shunt typically survive illnesses better than those with the BT shunt.  I was glad that we didn't have to make the decision!  The other thing they do during the first procedure is they "core out" the atrial septum in order to allow the blood to mix freely.  Now there is one big atrium and one ventricle.

 Dr. Kaza, our cardiothoracic surgeon likes to give the extra material that they use for the shunt to the parents so that we can see what is in our baby.  This is it.  It's very soft and flexible, but the rings keep it from collapsing.  I believe they told us that the shunt in Christopher is 5 mm long, but I honestly don't remember.  He will have this shunt until the second surgery is done in about 3 or 4 months, and will be on aspirin during that time to prevent the shunt from clotting.  (By the way--my hands look awful because I have to wash them so much now!)

Here is the information on Stages II and III.  We have been told to be prepared for Christopher to have some nasty headaches after the second stage because the blood from the brain goes directly to the lungs, and when he cries and it backs up into the brain, it hurts!  Those babies come out of surgery basically sitting up so that gravity can help with this.  Stage III is not technically "open heart," and I think there is actually a catheter procedure being developed to do it, but I'm not sure of that.  I guess we'll find out in a few years!

 Here are his battle wounds.  All of the holes in his stomach are from the chest tubes and drains.  The patch on his neck is where they had an internal jugular IV, and the gauze next to his belly button is where the PD catheter (a drain in his abdomen) was.

When Matt and I went in on Tuesday night we saw this list on the board and we were amazed.  Christopher was getting better pretty slowly, so to see so much get done it one day was fantastic.  Now I will translate it for you.  They gave him more blood, started a new peripheral IV, discontinued his heparin, pulled out the drain in his stomach, pulled out the line that was in his heart, pulled out the internal jugular IV, pulled out the arterial line in his right wrist, got him off of the milrinone (that was helping his heart when he was so swollen and they were trying to get more fluids off of him), and did a complete echocardiogram to make sure everything was working how it should be.  The completion of this list means he is ready to get out of the cardiac ICU!

This is what his IV tree looked like on Tuesday night.  Compare it with the one in the pictures right after his surgery to see the huge difference.  And the pump that's sideways is my milk, so that doesn't even count!  When I went to see him yesterday he was only on lipids, so there were even fewer pumps.  It's so fun to see him get better so quickly!

Being extubated and free of any drains meant I got to hold him again.  It was SOOOO nice!  I don't know if I'm ever going to get anything done when he comes home, because I don't know if I will be able to put him down.  I know he looks a little blue in this picture, but that's just because of the lighting.  His color really is pretty good.  Just another FYI for the curious, after the first surgery the oxygen saturation is supposed to be between 75 and 85%, so the babies typically are a little bit pale or blue and it's normal.

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!

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.