10th Annual Children's Heart Walk

Last year, we assembled 'Team Jaxson'  for the Children's Heart Foundation 9th Annual Walk With The Heart Of A Child event. At this event, we had only just found out that Jaxson would be having open heart surgery. We did not know when.

If it weren't for the Children's Heart Foundation- I wouldn't have been able to comfortably stay with Jaxson during his surgery. I was provided meals and care packages.

It's been a big year for us and are more than excited  for the 10th Annual Heart Walk!!

'Team Jaxson'  has been assembled for another go.

It looks like we will have a depressing lack of familial support, again. I don't understand why, but it is what it is, and that's for a whole different blog entry.

Please, if you can, donate to 'Team Jaxson' on behalf of our most amazing, lovable, strong warrior!

DONATE TO TEAM JAXSON!

DONATE TO TEAM JAXSON!

Thank You!

It Has Been A Long Journey

This is a long overdue update on Jaxson and his battle with CHD.

Since his surgery, we have been dealing with Jaxson's lips turning blue. He has been in and out of the cardiologist's office every few months and it has been decided that it is nothing. It seems that his lips are just the last thing on his heart's list to send blood to.

He also spent a week in and out of 2 hospitals, with the scariest rash I've ever seen. He underwent multiple blood tests and a couple different diagnosis, before we found out he had purpura. He had been fighting a few different colds, and his antibodies started attacking his small blood vessels, causing them to swell. His legs and feet swelled up so bad he couldn't even stand. He was already on the path to healing before they figured out what it was.

On December 26th, 8 months post OHS, we went and saw the cardiologist. I was nervous. Something crawled into my brain and told me we would get bad news. His appointment in September told us that he had arterial leakage and the hole wasn't closed. Turns out, the hole is completely closed. His heart healed over the patch so well that the cardiologist couldn't even see it in the ECG! He is now on 6 month visits, which is a HUGE deal to us. A year ago we were going to the cardiologist every 2-4 weeks, depending on his condition. 6 months visits did not seem reachable.

So here we are, 9 1/2 months post OHS. It seems like forever ago. Jaxson is growing great. From below the 3rd percentile his whole first year to 20th percentile. What a blessing. He is so smart, it's amazing. At almost 22 months, Jaxson can speak 4-5 word sentences, learning his colors and alphabet quickly and has AMAZING manners. And he loves showing off his boo-boo belly!

So proud to be his Mom.



I will attempt, yet again, to keep this updated. More with life in general, now that Jax is fully recovered.

Not So Dirty Thirty

Getting old sucks. Plain and simple.

Remember when we were younger, all we wanted to do was grow up and be able to do whatever we wanted? I wonder what age it is, when your mind flips and decides, "hey, this getting old thing isn't cool. I want to be young again!"

Decade birthdays frighten me.

Well, I didn't have a big 'dirty thirty' party like my friends without kids have, but that's okay. I had a great birthday weekend. Friday a friend came over with her niece, we went to Applebee's then came home and killed off a bottle of Morse Code wine. Saturday we went out for breakfast at Ihop, then Cale and I went to the Adventuredome for a kids party. On Sunday, the boys made me cards and Brian sent me for a nice spa day that included a deep tissue massage, haircut, manicure and pedicure. It was nice. They put candles in a cupcake and sang to me. Ended the night with a glass of wine, a book and a hot bubble bath.

Now I venture on to juggling moving during the Thanksgiving week and weekend. I am reluctant to leave our home, but looking forward to this new chapter in our lives.


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11

Playing Catch-Up

Jaxson's appointment went well. His heart looks fine, though we found out the residual hole from the patch is still there and he still has a bit of fluid leakage. His next appointment is in December.

In home news, we found out two weeks ago that we have to move. It is very unfortunate. We have lived here for over 4 years and the kids don't want to change schools or lose their friends. The down side of renting I suppose.

The house hunt has been a bust so far. Our house is 2500sqft with a decent enough lot size. We are okay with downsizing, but we can't take a drastic drop. So finding one of a good enough size and in our price range, in this area is HARD! We found one, but the owner gave it to a military family instead.

The hunt continues...

In health news, all three boys and I have sinus infections. Jayden and Cale have it backed up into their eyes, yuck! My anxiety has subsided TONS. I watched the movie 'The Secret' and it dealt with the laws of attraction. I have applied that to my life and it has changed me so much. I will blog more on that later.

Well, the coffee smells like it's done brewing. Off I go to pack some more if the house.

4 Months

It has been 4 months since I have updated Jaxson's condition.

In July, One month after his open heart surgery (OHS), he still had a residual hole leftover from the patch and extra fluid around his heart. it was unclear if the fluid would go away, but he would be fine if it didn't. Still waiting for that residual hole to close.

In June, 2 months post OHS, we found out the residual hole is closed and the fluid is gone! Thank God! He is doing perfect and his chest is healing fabulously! His cardiologist appointments are going from every 2-4 weeks to 3 months. Then he will be on yearly appointments for the rest of his life.

What we are facing today-
Jaxson has been having issues at night with elevated heart rate while sleeping and nursing. This causes him to have a hard time breathing. I have also noticed that when he cries hard, his lips turn purple pretty much instantly. Yesterday, this happened 4 times. I have called his cardiologist and they said to bring him in today. Time to find out if anything is wrong.

I will be requesting a pulse oximeter for home use. It's the quickest way to know if something is wrong.

I will update after his appointment.
Until then, here are some pics of my CHD warrior!

Jaxson's Surgery

How does a parent prepare for their baby to have open heart surgery? You really can't. I read stories, looked at pictures... nothing can prepare you for the look on your baby's face as you hand them to a stranger who you know is gonna cause them pain, and that there is a chance your baby could die.

1%. That was the chance that something could go wrong. Slim as it may be... there are still people out there that represent that 1%. And I DON'T want Jaxson to be one of them!

5%. That was the chance that he would need a pacemaker. I'll take that easily, except it would mean another surgery.

Friday the 13th. The day of his surgery. He was scheduled for 7:30 am. First surgery of the day for Dr. Ciccolo. On the 12th I got a call that there was an in-house baby that desperately needed his spot. Friday the 13th, surgery and times are getting pushed around. Not great, but I more than willingly gave the position to the baby. It also meant that Jaxson could nurse until 8am, so that was gonna make it easier on us. Surgery is at noon, we had to be there at 10.

I was amazingly pretty chill most of the wait before his surgery. With tears and nerves coming randomly. We played, he cried from hunger, we played some more. Noon comes and nothing. We wait, and wait some more. Finally at 12:45 the surgeon comes in an gives us a pep talk. 20 minutes to go...

1:20pm. It's time. Holy crap! Really? But we just got here. I'm not ready! He's not ready! He's only one and this is dangerous! I breathe and not let Jaxson sense my fear. We walk him to a hall and get stopped at a big red line. We cannot go farther. The nurse motions for me to hand him over. "We can't fix him until you let him go." But I don't want to. I kiss him a bunch, without it feeling like it was enough times. Tell him I love him more than words can say. As we walk away with nothing but his blanket in our hands, I cry. And I cry hard. All the nurses we walked passed smiled as reassuring smile as they could muster up. We gathered our things and headed out to the waiting room to play the waiting game.

                                                    This chest will never look the same.

The last hug before surgery

Brian's parents brought us some McDonalds. I spent most of the time on instagram (as usual). Brian slept the anxiety away. After only 3 hours (they told me at least 4 1/2) I look up and see his Dr. ... Oh my God it's too soon, what happened?!

"Jaxson is fine, he did great. But I want to talk to you in the private room." WHAT?!?! Don't use 'but'...

He did do great and he is fine :) The Dr. just wanted to inform me of some things they saw and believe the problems will resolve themselves within a year. He was able to remove the muscles that were causing the double chamber in one of the valves and patch up the hole. There is a bit of a "leak" from what they call a residual hole. The hole was 7mm, this residual hole is 2mm. He said the heart will form a muscle over the patch to protect it, and it should cover and close the hole. If it doesn't, it's not a big deal. It is one of those "innocent" holes that won't harm him. He said if he dug into his heart any more to close it, he would have definitely needed a pacemaker because of the damage to his heart.

He said in about 20 minutes we could see him as they took him to his PICU room.

We got to kiss him on his way to the elevator to his room, then had to wait for him to get set up. He looked great! Aside from all the tubes and IVs, he looked perfectly normal.

So here I sit with him as he recovers. It has been about 20 hours since he got out of surgery. only 3 hours after, he was already trying to wake up and pull stuff off. They've been keeping him sedated (trying to, anyways) because he's too active! It's okay, I'd rather let him sleep and heal than worry about trying to hold him without hurting him. Soon though, very soon.

He is already off of the breathing machine. (He had decided that on his own and pulled out the tube). His oxygen is ranging between 96 and 100. So that's great.

He is doing amazing and recovering very well.

Update (picture heavy)

Just as I expected- I forgot to keep this updated. I think about Jaxson and his condition every waking hour (and every sleeping one, too). How could I manage to forget to write about what he has gone through, and what he is about to go through?

Jaxson had his heart catheter surgery on February 6th. What a rough experience. It was very hard having to keep him from eating. He screamed the whole way to the hospital. We played in the kids waiting room for a couple hours, waiting for the time for me to hand him over.

Then he finally fell asleep an hour before it was time.

They led us down a long hall full of surgery rooms. We get to his room and there was about 15 people in there, all for Jaxson. Just as quick as we walked in, they told me to lay him down and I instantly felt like I hadn't told him I love him enough. I started crying that instant and hugged him so hard he probably almost broke in half. I kissed his trusting face and trusting eyes and begged him to please wake up and be okay when it was all over. [pause to gain my composure. Remembering and reliving is hard on me]. As I laid him down they had the mask ready for him to sleep. The anesthesiologist asked me if I wanted to give him one more kiss and as I did, I smelled the sleepy stuff coming out of the mask they held above his head. Begged him one more time to be okay and asked the Lord to take care of him. I watched him scream under the mask

and stare at me like he couldn't believe I just put him down on that table. He fell asleep within 30 seconds. We kissed his forehead and were ushered out to the waiting room to wait the 2-3 hours it would take. I curled up with his teddy bear and blanket and shut down.

We went right across the street to Denny's and got some food to try and waste time. We got back and about 20 minutes later Jaxson's cardiologist came out and said everything went fine and he is okay. They saw what they needed to see and determined he needs open heart surgery to remove the muscles that have formed in the hole, and then close it up. I let that bad news go and just wanted to see him. Even though I couldn't hold him for 8 hours.

We went to see him in the recovery room. I instantly lost it. He looked so bad, like he was sick, even though he wants the least bit sick. He looked like he was gasping for air. I asked why he can't breathe and they assured me that it was because he was actually crying, but he was too weak from the anesthesia to actually cry. They said they couldn't believe it, that he should still be sleeping! My little fighter. They let me give him some pedialyte to help calm him down. He was so hungry and thirsty.

There's his little leg cast. We waited for 2 hours for them to release him from recovery and go to his room. We were staying over night, Brian went home to take care of Jayden and Cale. I had to wait 6 more hours until I could hold him. So he played with his cords and things...

Then he finally fell asleep...

9:30 pm came and I could finally hold my special little guy! And he never let me put him down after that until we left the next morning.

The next day he was happy as a clam and ready to play!

He did better than me :)