CHD Journey part 3-Yeah, it's a long story!

.................................Hours after surgery, Jaxson had PINK FEET!!!! 

What a difference. We knew right away he was already getting better. His color was Perfect!
We were so happy!!!!

Before surgery

After Surgery

Bob had to return to work the next day so I had a friend come and sit with Jaxson and me.

We spent the day chatting and just taking in all the sweetness of my Little guy. It was hard to hold him without pulling any tubes or I.V.'s . I was especially worried about his chest tube. I didn't want to cause him any more pain so I was really careful and laid him on a pillow in my lap. We also started to slowly feed him. Because of his tubes I couldn't nurse him so they mixed my milk with formula in a bottle-they needed to boost the calories. It was really hard for me to give him a bottle. I just wanted to feel him close to me. I didn't nurse my other 2 kids very long, it was extremely painful and  I couldn't get it down.

Being able to nurse Jaxson made me happy and now I had lost that too.

Jaxson's surgery was Thursday and by Saturday afternoon they were moving him to a private room on the Surgical floor. I think it might have been due to a few cases of the H1N1 Flu that were coming into the PICU.  Anyhow it was so nice. There was a couch/bed, private bathroom and PEACE AND QUIET!

 It was so noisy in the PICU. Kids crying, machines beeping and this machine that was like the drive through at the bank but about 5 times bigger and noisier, right across from Jaxsons bed.

I didn't go back home after that. I lived at the Hospital. Bob would come up at nights to have dinner with me and we would watch a movie together. I hated being alone.

 Jaxson got x-rays at 5:00 am every morning and then the Dr's would come to talk about his progress. The  X-rays showed that Jaxson's heart was shrinking. This was wonderful news. Before his surgery his heart was over expanded. The heart is a muscle and when it is overworked it gets bigger. Like a balloon that's been inflated then deflated, Jaxsons heart was stretched out but it was getting smaller.

Nurses came in to check vitals often and to weigh Jaxsons diapers to make sure his organs were not damaged by the lack of blood flow, also to make sure his body wasn't storing extra liquid. He slept alot so I spent the days rocking him.
I only had 1 visitor come during this time. She was so sweet and brought me Cafe Rio! It was like manna from Heaven. Other than her and Char no one else came and I started to get really depressed.
 Hormones-ya know!

There were hard times on the surgical floor. Because Jaxson didn't have a full-time nurse, I felt like I couldn't leave him. I stayed in his room 24 hours a day.( I had a Bag of snacks and my pump from home, so I didn't need to leave.) Also the nurse we had the first 2 nights came in EVERY HOUR to see if Jaxson or I needed anything. It was sweet but super annoying. I'm a lite sleeper anyway so whenever he would open the door, I would be wide awake. So after little sleep for 2 days straight, I started to really get stir crazy. Thoughts of taking my baby and running home started to fill my day-dreams. Ya, it was that bad!

When we got to see his incision, i felt so bad for my little guy. I wanted it all to just go away. I know it wasn't nearly as bad as Open heart surgery, but for us it was horrible.

Jaxson's incision- Day 6

On day 6 they were ready to take out Jaxsons chest tube. It was AWFUL! It had 2 stitches to hold it in place and it was stuck to his skin because of the scabs. They cut the stitches and got it a little moist and then yanked it out. Jaxson screamed like I had never heard before. They handed him to me after that. Soon I was crying right along with him. I can't even imagine the pain he was in.
This meant he was making progress even if it was painful.

There was a good side. Now that the chest tube was out they let me nurse every other feeding. I'm sure the nurses were happy that they didn't need to come every time and get the milk I pumped and put it in the freezer.
We are like milk cows in our family-I had filled 2 box's with little cups of milk! Yikes.

Later that day, Dr Tani came and said Jaxson was doing so good that if he showed any weight gain the next day we could go home! We lived close enough to Riverton Hospital that if there was an emergency we could get there fast! Unfortunate, That night was really bad for Jaxson. He whimpered most of the night and even though I rocked him he wasn't happy. Jaxson's nurse wasn't the greatest either. She kept forgetting to bring his bottle. I had to go to the nurses station and ask someone to go get it for me! GRRR! That was the worst!

When the Dr's came the next morning, I wasn't happy either Jaxson hadn't gained any weight so they wouldn't discharge him. Now I was whimpering too. I needed to go home. I couldn't stare at these 4 walls anymore. I wanted to eat food I was used to and sleep in my own bed. I missed my kids and wanted to be with them in our home. I just wanted my own space where we could be comfortable and relax.

That night was rough, as long as I held Jaxson he didn't cry. So I spent another night in the rocking chair!
 Luckily, the next morning at weigh in Jaxson had gained an ounce!!!! Bob came up that day and together we learned how to clean his incision, how to hold him and keep him comfortable. We also learned CPR and what warning signs we needed to watch for. Jaxson was going home on Oxygen, Lasix-reduced water gain and helps keep Blood pressure down- and Lortab. They showed us how give him his meds and how to work the oxygen tank. They gave us tips for keeping Jaxson healthy and keeping Sick visitors away. FYI- usually Family members are the worst! They think a little cough or sore throat are no big deal but for Heart Babies it could be deadly!

  

Leaving the hospital was the best feeling in the world. We were going HOME !!.............................

ready to go HOME!!

The next couple of months we good. we didn't take Jaxson out except for Dr's appt and then twice to church. Once to get Blessed and then on Christmas. Jaxson was a good baby and we loved having him home. We thought that our Heart troubles were behind us until in May 2010 at a routing Cardiology appt. they found more things wrong with Jaxson's Heart. :(  

They found that he had:
Aortic Valve Stenosis- Valve doesn't open properly slowing down blood flow.
Mitral Valve Stenosis- one of  Jaxson's valves bows catching blood inside instead of flowing through
Bicuspid Aortic Valve- Normal Valve looks like a peace sign(3 sides)-Jaxson's only has 2 sides.

We were very sad. We had hoped he wouldn't need anymore Heart surgeries. Someday Jaxson will need Valve replacements. It's an open heart surgery and not a final fix.
 He will continue to need surgeries through out his life.
 For now we check in regularly with the Cardiologist and try to live a "Normal" Live.
We know we have been blessed beyond measure to have Jaxson in our lives. We have amazing Friends and Family that have done so much for us! We love you all and wouldn't be where we are without YOU!!


Thanks for letting us share a little bit of our everyday with you! Our hope was that by sharing our story we could help raise awareness for CHD's and to hopefully help others who are looking for support!

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♥ Rhi