Jackson was born August 2008 with Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart defect affecting the left ventrical and aorta. Three days after he was born he had the first of three open heart surgeries at Primary Children's Medical Center in Salt Lake City, UT. In January 2009 he had his 2nd surgery, the Glenn, and in May 2012 he had his third open heart surgery, the Fontan. He is currently doing great and you would hardly know he's anything but perfectly healthy. He's sweet, cute, and as wonderful as they come and such a joy in our lives.
We have had such a good Christmas. Jack finally got to meet the rest of his cousins who live out of state, many of them braving nasty weather and very long drives to make it to Utah for the holidays. We've had parties and gatherings every single day and it has been so much fun.
Thankfully everyone has been healthy so we didn't have to stay away from anyone, we just had to be careful and not pass him around too much. The only repercusion is that Jack is pooped. He's used to being cooped up with me all day and suddenly he's turned into a party animal. I think he finally got into the partying mood today though because I swear he talked and babbled happily non-stop, beginning at 4:00 this morning. Silly boy.
Jack got some awesome toys, but his favorite Christmas present was from me to both he and his dad. Hardy adores bulldogs and plans to get one for our family someday. Since we're not quite ready for that, I found a stuffed one that's bigger than Jack to tide the boys over hopefully for a few years.
I don't know why we even have that large, expensive, noisy oxygen concentrator in our living room that we spend all day tripping over. Everytime I go in to get Jack up from a nap, or at night, or set him down for more than 3 seconds he manages to either yank his tubes off his face, or at the very least pull the canula out of his nose. It's his favorite game and the best way he knows to get mom and dads attention. Thank goodness his sats are still high enough that it's not an emergency without it or we'd be in real trouble. Little stinker.
What's a mom to do but take a picture of a cute tubeless face and tape it back on?
I've been debating whether or not to start Jack on solids since the "experts" say he's big enough now, but I don't want him to get too used to them before his surgery. But lately he loves to watch us eat, so I bought some rice cereal and have let him play with it a little a couple of times. He's not very good at it, but he thinks eating is great fun and usually smiles so much that it all dribbles back out. He is also a big fan of his cute new high chair (thank you Strong aunts and uncles!)
Jack had a sedated echo this morning. Last time we did this we had to spend the entire day sitting around in the recovery room and it was awful. This time we came prepared with toys for Jack, treats for us, and a plan to take the day in shifts. Instead we were oh so happily informed that he's now big enough that we didn't have to do the 12 hour stay and could go home as soon as he woke up and ate. Happy day! It took a little while, but he finally came around and we were able to meet with Dr. Mennan and get out of there 8 hours earlier than anticipated. It was great.
Even better was the good news that Jack's heart is still looking good. His sats were in the mid 80's and he's getting quite chunky. We are scheduled for an MRI on January 14 and will do his surgery the following week.
As an added bonus we got to see Jack's heart buddy Daxton who was in for an appointment as well. It was great to see you Hilary!
We feel so blessed that Jack is doing so well and can't wait to spend some time with his cousin's over Christmas.
As Jack’s mother prepares to turn 30 I thought it would be appropriate to give tribute to her. I can’t wait to talk to Jack about his mother, to tell him how special she is and how much she loves him. Here are some things I know Jack will love about his mother.
She loves Jack with all of her heart. I don’t think Aimee has got a good night sleep in six months. Whether it is getting up to feed Jack, or pump, or worry she has sacrificed sleep every night on his behalf. She never complains about taking care of her child. She truly understands what it means to be a mother. I love watching her interact with Jack.
She is in her own words “Damn Smart.” One of Aimee’s greatest gifts is her mind. She has always excelled in anything she has done. She was a high achiever scholastically and enjoyed a very successful professional career in different capacities before she decided to stay home with Jack. This success has helped her develop a confidence which I love and admire.
Aimee has never once complained about the burdens of being a “Heart Mom.” From the day of Jack’s diagnosis she sought to educate herself on what we would be facing and making preparations for the challenges that were ahead. She found other families that had been through the same thing and has become very active in this community. She gives freely of her time to help others who are in the same situation.
Aimee is the most patient wife ever!!!! She let’s me coach basketball despite the added burden that it puts on her. This is a total indulgence on my part but something that I love so much. Not only does she allow me to be gone several hours a week she puts up with me telling her a thousand things related to basketball that she probably cares nothing about. She also does not complain when she is trying to sleep and I am on the phone to Barnes talking about basketball all the time. I hope she knows that I recognize this sacrifice!
Aimee is the most trustworthy person I have ever known. I have never once doubted anything she has told me. I have never seen her take a short-cut in anything be it work, a church calling, or any other assignment she has been given.
I could go on all day. I consider myself so lucky that I get to spend the next 30 years with her. I know that Jack already adores his mother. He is so fortunate to have her and she will help him so much throughout his life. Happy Birthday Aimee!!!
Yesterday was Jack's 4 month pediatrician visit. He's in the 50% for height and weight. What a perfect baby. He was cute and giggly for Dr. M and she said he looks really good. His sats were even in the mid 80's, so we like to see that. He had to get some vaccinations and got his RSV shot. I don't know who was more upset about it, Jack or Hardy. Good thing mom's a tough cookie.
A few random fun facts about Jack:
His favorite sounds are a) snorting, and b) spitting/farting. He thinks they are hilarious. i guess our friend Travis is right - they are innately funny.
When Jack gets excited he loves to slam his little feet down on the changing table and wiggle all over.
He is a major Mommas boy. He watches me all the time. No matter how entertaining the other person who is holding him, he always keeps his eye on me. It makes dad a little jealous until I remind him that he is also a mommas boy so he's just taking after his father.
His hair is starting to grow in and he's no longer a red head. Oh well, it was fun while it lasted. Now he's just a dirty blond like his mom and dad.
Jack is going to be spoiled at Christmas. I'm trying not to go too crazy, but there is so much fun stuff out there. Hardy's just lucky I can't leave the house very often or I might really go overboard.
Jack HATE'S tummy time. Every time I flip him over he just scowls at me and works his way up to a wail, but he is getting stronger. Too bad just around the time he should really start to think about scooting and needs to practice being on his tummy they are going to cut him open again and we won't be able to do tummy time again for a while. Oh well, we'll take whatever milestones we can whenever we can get them.
Jack looks like he's been playing with a kitty this week, but no, they are self inflicted wounds on his cute face. Darn sharp baby fingernails. I swear I file them down every morning and by night they are razor sharp.
Last night Jack had another little episode similar to the one that took us to the ER a few weeks ago, only this time he did it while being watched by Grandma and Grandpa. Hardy is out of town for work and I had a Christmas party with some friends so my parents had agreed to watch him for a few hours. He was doing great until suddenly he wasn't, and he cried until he went limp, glassy eyed and was gasping for air. That's when my dad finally decided thay had better call me. I freaked out, threw my fondue pots in the car and rushed to their house.
I called cardiology and like last time was again advised to bring him in if he didn't calm down within the next little while. He finally started breathing normally so I decided to take him home, but I was really nervous to have him in the back seat alone. Thankfully my mother offered to come stay the night and ride in the back with him. I was extra glad she came with me after he started throwing up when we got home, but ultimately I think that helped him clear out some of the fluid that was building up and he wound up having a pretty good night. So far he hasn't developed any symptoms of being sick today. He's just been extra tired, but still cute and smiley.
I've heard things get easier after the next surgery, so let's hope that's true. I think he'll be getting his Glenn in about 6 weeks or so, so hopefully that will help and major crying fits won't be quite so awful in the future.