Leah Turns Four

For some reason, I neglected to take a single picture of our Thanksgiving. I must have been distracted by all of the fun we had! We drove up to my sister's house in Mountain Home, ID, and sang, played games, and ate to excess. It was a really fun Thanksgiving!

Leah had a great birthday party. We had several family members come over and we had a big dinner, then she opened her presents.

 She wanted a Batgirl cake, so I caved and used fondant (blech!). Luckily, she thought it tasted good and she actually ate it, so that was good. I made it blue because I couldn't fathom using enough food coloring to make it black, and blue is her favorite color. She loved it, and that's all that matters, right?

Here is some of the chaos of opening presents:

And here is the birthday song and her blowing out the candles. I was funny and decided to pan the room to get a shot of all of the people who were there, but missed the moment of her actually blowing the candles out. Oh well!

Halloween 2012

Halloween was so much fun this year! It all started with a trip to the pumpkin patch:

I had to throw this picture in as well, because Leah cracks me up.

Dad and Leah perusing the pumpkins. 

 Dad is so happy to be at the pumpkin patch.

 Leah was a pumpkin cleaning beast! She got right in there and did all of the work.

 The pumpkin carving party:

 Shannon was disgusted and didn't want to clean it out, so Dad had to help her.

 Leah was a cute kitty.

 Ready to go! For once it was actually decent weather and we didn't have to wear coats or anything!

 I did the Hello, Kitty (but only finished it halfway because there just wasn't time), Nanny did the painted one in the middle, and the one on the right is Shannon's.

 I didn't really intend for all of them to be in black, but it was cute! Christopher is wearing the onesie that he got when he was in the hospital the day after being born last year. It's a 0-3 month and it fit perfectly!

 "I'm a mean old witch with a hat, and I ride on my broom with my cat!"

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!

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 4^th 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!

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!

Shannon is Six!

Shannon had a prolonged birthday since we were busy with Christopher in the hospital.  On the day of her actual birthday she had pancakes for breakfast, then she opened some of her presents from us.  Here she is with her new camera. 

Happy birthday!!!

She went to her cousins' house for the rest of the day and we had her actual birthday party a few nights later. She made out like a bandit!

A microscope!

Leah enjoyed the cake a lot.

Shannon got a science kit that came with a fossil for her to excavate, a volcano to build, and triops eggs. She thought the fossil was really neat, and she has already started her triops eggs. Tonight we might have to do the volcano.

 Aside from anything related to science, Shannon also loves to read.  This picture isn't great because Matt was trying to get a candid shot of the girls reading together. This is one of their favorite things to do.

She also loves to read to Christopher whenever she can. He loves it and gets very excited.

Fourth of July

We had a really fun Fourth this year.  It was very relaxed.  We just did some fireworks at our house and watched all of the ones our neighbors did as well.  Here are Shannon and Leah with their sparklers.

 Here they are with some fun sparkler swords we found.  They really enjoyed this.

In other news this summer, a friend of mine gave me all of her gooseberries this year because she had to go out of town and they were getting too ripe, so I made some leather and 10 jars of jam.  She also gave me these currants, and I had never seen currants before. They were beautiful! There weren't tons, so I just made juice out of them.

 The girls had a sleepover with their cousins, and they had a BLAST! The oldest one is all the way on the right under the blanket.  It took me a few minutes to figure out where she was.

The Boy

(Warning--This post is super long! And don't miss the post about the girls below.)

On Saturday, June 16th, Christopher was a happy, seemingly normal baby.  I took this video because he was just talking and talking!  This is what he usually does when he's awake.

He was a little bit fussy Saturday night, but I put him to bed and he went to sleep.  He woke up at 1:30 and was very upset.  I tried a suppository because he hadn't messed his pants that day, and within minutes he filled two diapers.  I thought that would take care of it, so I bundled him back up and put him back in bed, but he wouldn't calm down.  We tried the swing, tylenol, rocking, music, more food, and nothing worked. Matt took him to the ER so that I could get some sleep.  He called me and told me that they were admitting him because they couldn't get him to calm down either and he was needing more oxygen than he should have needed.

I went to the hospital after sleeping for a little bit and I sent Matt home to sleep.  The doctor thought that since Christopher had recently had an ear infection, he could possibly have meningitis, so she sent us down for a head CT. I was standing right outside the hall when the tech came out and met the doctor and she pulled him into a room with a serious look on her face.  I knew right away that something was wrong.  They came out and told me that Christopher had quite a large bleed in his head.  I was very surprised and just wanted to know what in the world had caused it. I saw the images of the blood, and couldn't believe it. What a headache he must have had! Luckily, very little, if any, of the blood was actually in his brain (there are membranes that protect the brain), and it was not pushing the brain enough to cause him to stop breathing or anything. For the viewing pleasure of my many medical family members, here are some nice pictures of the bleed (for which, thanks to HIPPA, I had to sign my life away).

 

The doctors did everything they could think of to figure out what had caused the bleed. I've never seen so many specialists!  They finally came to a consensus that it was a hemorrhagic stroke, but they needed to find out why it happened to prevent it from happening again. I think it was Tuesday, the 19th when I was sitting by Christopher and he started to get really fussy and his right arm and leg started twitching (the stroke is on the left side). That went on for about a minute, stopped, then started up again a few minutes later and went for 5 minutes. On this unit if a seizure goes on for longer than 5 minutes they give Ativan, so that's what they did and it worked immediately. Neurosurgery came and evaluated him, and put him on an anti-seizure medication called Keppra. That did the trick! He had another seizure a few nights later, so they increased the dose and he hasn't had one since.

Occupational therapists and physical therapists immediately got involved and began the process of getting him to move his right arm and leg again, since the seizures caused him to somehow forget that they were there. Here he is after one of his OT workouts. He was pooped!

The OT/PT teams and child life specialists are very good at making sure the kids are always entertained while in the hospital.  They found this toy, and he liked it so much we went to Walmart and got him one.  This is the first time he smiled in almost a week. You can see that he is not moving his right side very much (although the IV in that hand didn't help at all!).

The rest of the days in the hospital were just a blur.  He was moved up to the floor, where they told us that his blood cultures had come back positive 4 times in a row for Staph Epi.  This is a bacteria that is naturally found on our skin, but shouldn't be in the blood.  They ran the test 4 times because they kept thinking it had to be a contaminated sample, but after coming back positive that many times, they knew he actually had the bacteria in his blood.  The new theory became endocarditis. Every once in a while some of this bacteria is introduced into the blood stream, where the body's natural defenses usually get rid of it, but in cases of heart defects, where there is scar tissue in the heart, it can kind of find a nice little place to hide out and start growing. There are published cases of patients with endocarditis who develop head bleeds, and they believe that may be what happened in this case. It's possible that a piece of the infection in his heart broke off and traveled to his brain, where it got stuck and burst a blood vessel.  There is still no way to prove that this is the case, but since it's a good possibility, he is being treated with IV antibiotics for the next 6 weeks in order to get rid of the infection.

Here is a picture of his PICC line, where I give him his IV antibiotics every 6 hours. A nurse will come to the house to change the dressing and draw his blood once a week. (For those of you with enough knowledge to be curious, it's in his leg because he has a single ventricle heart. His superior VC is otherwise occupied right now.)

And here are all of the meds he gets orally, twice a day. The red one is an antibiotic that makes everything, even his tears, orange. It can actually permanently discolor soft contact lenses. Gross.

Here he is his first day home from the hospital. He played so hard he just had to take a nap! Turn up your volume so you can be sure to hear the humming he does when he sleeps. He has done this his whole life, and I think it's really cute. The leg warmers are a little girly, it's true, but they are great for keeping the PICC line clean and safe. Matt thinks he looks like a Flash Dance reject.

He is recovering the use of his right side much more quickly than I thought he would. He will have OT/PT coming to the house every week to help him with that and with his milestones. He has follow-up appointments with neurology, neurosurgery, cardiology, rehab, infectious disease, and his pediatrician, so you know what we'll be doing in July!

I guess I should talk about how the rest of us are doing through all of this. We are all very tired, and this has been an emotional few weeks, but we're really doing pretty well. This has been a stark reminder of how sick our little boy really is, even though he doesn't look or act it. When he had his second heart surgery I had several people say, "Only one more to go, right?" Perhaps I painted too rosy a picture. Perhaps I was just naive, but the reality is that these surgeries only prolong the inevitable. He will have to have a heart transplant some day, and those usually only last 5-10 years (sometimes a little longer). There is a good possibility that we will outlive our child, and we have dealt with that (as much as one can), but events like this are very difficult.

That being said, we hold out hope that God will work miracles through our son. We have already seen so many, and it has been such a blessing to have this little boy in our family! There are patients who have had these procedures who are in their late 20s and they're still going strong. Why shouldn't Christopher be one of them? We know that all life is in God's hands, and He has a plan for our son. We hope he will live a long and happy life, but we are also ready to accept God's will if He has something else in mind. One thing is for sure, we are getting pretty good and not taking things for granted!

The Girls

Shannon graduated from Kindergarten! I think the whole ceremony with a cap and gown is a little over the top, but it was cute anyway.  She was sure proud of herself.  Here she is getting her "diploma."

Here she is with her teacher, Mrs. Bingham, and the aide, Mrs. Phipps.

Now that school is out the girls have been playing together all day, every day.  They drive each other crazy sometimes, but isn't that what kids do? We got the pool out, and they have spent quite a bit of time in there. They are doing "daddy school" every other day during the summer to learn a little bit of Spanish and other things, and they absolutely love it. Leah can already count to 50!


A few weeks ago my niece got married and the girls were really excited to go to the party.  Shannon was heartbroken that her cousin, Kade, didn't want to dance with her, because she had been looking forward to it all day, but Tadd sure liked dancing with Leah!  He was very funny! I love that Leah just stands there and watches him when he pushes her away.

Here is Shannon in her first piano recital. She is the youngest student, and was fascinated by the older students playing duets. I think she was inspired! She was really nervous, so she messed up a lot, but for being in front of an audience for the first time I was just impressed that she remembered all of the songs!

A Blessing, an Eclipse, and an Award

Yep, I'm squishing all three things into one blog post because I'm lazy.  We had Christopher's blessing the first Sunday this month and we had quite a bit of company!  Here are all of the kids playing nicely together:

 The adults enjoying yummy food in the kitchen:

 And the handsome little man of the hour.  My mom made this outfit, and I just love the checkered vest!  He could not have been cuter!

 We made a pinhole projector to view the eclipse, and despite Leah's face in this picture, they thought it was pretty cool.  We had a perfect spot in our backyard and got to watch the whole thing.

 Here it is just after it was full.

 I had to throw this one in here because he's just so cute.  I put a tie on him for church last Sunday, and I didn't take it off all day because he was adorable.  What a happy little boy!

 Lastly, Shannon received an award for being an excellent student this year.  Here she is getting her medallion from her teacher, Mrs. Bingham.

Here she is proudly wearing her award.  She really did earn it.  She is reading at a second grade level and has worked very hard all year long.  We are excited for her to start 1st grade in a gifted dual language immersion class next year.  Her teacher will speak 3 hours in the morning in English only, then the last 3 hours will be Spanish only, so the kids pick it up pretty quickly. Since it's a gifted class she will also be following an advanced curriculum, so she's going to have to keep working hard!  We're very proud of her.