Wednesday, October 31, 2012

My Birthday Boy

Guess who turned 1!
Yes, his cake was a heart. I couldn't resist.
 Not quite sure what to think.
 "I guess I'll try some."
 "This feels really weird."
He did ok with the first little piece, but gagged and threw up the second. Oh well! We tried!
video

I was driving home from Primary Childrens Medical Center the other day after one of Christopher’s appointments and the trees everywhere had changed to the beautiful fall colors. It gave me a strange feeling that took me a few minutes to pinpoint. I realized that the last time I saw autumn was right before Christopher was born. I can’t believe how much has changed since then. I can’t believe how much I have changed since then. Things that used to matter just don’t anymore.

I told Matt about this and he said that this birthday would be a good time for us to do some reflecting. I don’t ever want to dwell on hard things in the past, but sometimes I think it’s healthy to look back and see what we've come through.

I remember the 20 week ultrasound as if it was yesterday. I was watching very carefully to see if it was a boy or girl, and I saw that it was a boy and about jumped up from the table. I yelled, “That’s a boy!” Matt looked up and said, “What?!” Then he heaved a huge sigh of relief. Finally, he was going to have a son. We went to the waiting room and during the hour we waited to see the doctor we called everyone we could think of to tell them the happy news. Then the doctor sat us down and was very unconcerned, but he looked at the pictures and said he couldn't see all 4 chambers of the heart. I immediately thought, “Please don’t let it be hypoplastic left heart.” I asked him if it was a ventricle or an atrium that couldn't be seen, and he told me he thought it was an atrium. I let that calm my fears and for the next week I was pretty sure that the baby’s position just wasn't quite right to see all four chambers and that he was going to be just fine.

Exactly one week later I went alone to the fetal echo and left Matt with the girls. The echo took a really long time, but finally the cardiologist took me to the exam room and handed me all of the information and told me about the diagnosis. I just couldn't believe it. Right away it was obvious to me how little I actually knew about the syndrome. The option to have 3 open heart surgeries performed on my child seemed horrific, but it was the only option that was even remotely acceptable in my mind.

The rest of the pregnancy went by really quickly. I loved feeling him kick and wiggle (and he was a VERY wiggly baby). Since it was summer I was able to sit in my garden and weed for hours and just think.  I was able to come to terms with things and move forward with faith and hope that we would be able to bring our baby home.

I didn't get anything ready for a new baby. I felt guilty anytime someone asked me if I had everything ready, because I didn't have clothes out, a crib set up, or a car seat. I knew that I would have time to do that later while he was recovering from surgery, and I didn't want to have everything ready if he wasn't going to come home. I still felt guilty for doing that, though. I felt like I wasn't showing any faith. My twin sister put it best, though, when she told me that when we get in a car we have faith that we won’t get in an accident, but we still wear a seat belt  That really helped me.

Christopher was born at 10:00 at night and I didn't get to really see him until about 3:00 in the morning. By then I was so drugged and so tired that it felt like a dream. The next day I got to hold him and kiss him, but I was still exhausted and in a daze. I was discharged that night and as I drove away from my son all I could think was “this is so wrong!” That phrase was running through my head for months! You aren't supposed to sleep ½ hour away from your newborn baby! There were several times when I left the hospital and I told the nurses, “I have to go take care of my kids,” then I would stop myself and say “My other kids.” I felt detached from my baby—as though he belonged to the hospital and not to me. Don’t get me wrong, I still loved him very much. Everything during that time was so surreal and it just didn't make any sense. When I look back at pictures of Christopher after his surgeries I get emotional. I remember sitting in the room with him, holding his tiny hand for hours on end, but in my memory it doesn't feel like that was me. I feel like I’m watching that girl, looking at her tiny, sick baby, and I feel sorry for her.

Then he came home. Before he was born I naively thought that he would have his surgeries, come home, and we would live normal lives again. When he came home I had to spend so much time taking care of him that I became swallowed up in it. The first six months of his life are a blur of feeding tubes, ER visits, re-admissions, vomiting, medications, and oxygen. By about the 4th month I decided to join the support group that I had been avoiding. I didn't want to join because it would just be more “heart stuff,” and I wanted our lives to be as normal as possible.

There is a group of women in the Intermountain area that call themselves “heart moms.” They are mothers of children with all different kinds of heart defects. They have been through it all. I asked a question on the Facebook page and had 3 answers within about 5 minutes. They continued to answer all of my questions. I found an excellent pediatrician who works with heart kids because of these ladies. They taught me how to be an advocate for my child. I never would have had the guts to do some of the things I've done without their help.

I have often worried about the impact all of this would have on my daughters. I have always wanted them to have the magical childhood that I had. This is another realization that I had to come to. Their brother will never be “normal,” and that’s ok. They know all about oxygen, feeding tubes, and Leah could take you on a complete tour of the hospital, but it’s ok! I have realized that their childhood won’t be exactly like mine, but it will still be wonderful. They have learned to pray earnestly. They have seen that Heavenly Father does answer prayers. They will be just fine.

After all we've been through the last year, we are finally settling into our new “normal.” Christopher hasn't been in the hospital since August (the longest we've ever gone), and he is absolutely thriving now. He’s rolling all over the floor and getting stronger every day. He still gags a lot on anything more solid than pudding, but he is making progress. We can’t take him out where there are lots of people because he gets sick so easily, but I love my home, so that’s usually not a problem, either. He talks all the time (just gibberish, but he does say “da-da”) and he ADORES his sisters. Shannon can always make him laugh.

What a year! I've learned so much, and I know I have a lot more to learn. I have a lot more compassion than I have ever had. I will admit, I still roll my eyes sometimes when I hear a mom complaining that her baby has to have tubes put in his ears or something else minor like that, but then I remember that for them, it is traumatic! It’s hard to see kids suffer, no matter what it is.

We have been so blessed! Matt’s principal has been very understanding and he was able to take his sick days last year without any problems. We have great insurance that has allowed us to not be financially burdened by all of the hospital stays. We have wonderful friends, family, and neighbors who have made it possible for us to do a lot of things. We really couldn't ask for more.

I gave a talk in church a few weeks ago on how trials can bring us closer to Christ. While I prepared that talk I came to realize that the best way to survive a trial is to be ready for it. We have to expect trials in our lives, and we need to pray and develop the necessary faith before they come. I am sure we will have plenty of hard days ahead, but for now we will enjoy the peace, we will be grateful for everything that we have, and we will continue to pray for the faith to weather whatever may come.

Life is good!

Friday, October 12, 2012

Um...I never posted the first day of school?!

 Here's Shannon on her first day of first grade! She was very excited and ready to go! Leah, of course, wanted a picture with her Barbie.
Speaking of Leah, she's a goof. She falls asleep in the funniest positions, and this is one of my recent favorites. That's my kid. Asleep. In a laundry basket.
"I love my sister SOOOOO much!"
 And no post would be complete without pictures of the boy! His physical therapist gave us this idea to get him to play while sitting up since we didn't have a walker or anything and he still sags too much in the Bumbo. He really enjoys having access to so many toys.
 For those of you who didn't see the picture on Facebook, here he is sitting up for two seconds. The fact that he is bearing weight through his arms is actually huge progress!
 He is certainly getting more wiggly. I have never had to strap him into his bouncy chair, but I guess I'll have to start. He got himself into this predicament the other day:
 Last, but not least, he finally weighs 15 pounds! As you can see, his legs are still very skinny, but they are starting to get some fat on them. His arms are getting nice and chubby, and his cheeks are just perfect!