Feet!

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A growing boy!

This little man is on a roll! Sitting up for a few seconds today on his own. Rolled to his right side today (has been rolling to his left since before surgery) and intentionally shook a toy so it would make noise. He was so proud he kept smiling. So close to rolling over! Also saying "da da da" a lot today. Why must the m sound be so hard to say!? And he had found his legs!

And Day 11 of daily naps. Today Cooper got down from the table after eating lunch and ran straight to his room and got in bed and waited for me to come read him a book. Say what!? Now if we could get some other routines down!

Mr. Peanut Butter

Cooper LOVES peanut butter. He wants to many spoonfuls that we have learned to make a jar his and he just eats out of it!

A Cutie

This little man is growing like a weed! We moved him to his own room on the 19th and he has done well. He is still waking up in the night refluxing. I feel so bad for him. He still manages to smile every day!

Boxes

The best toy EVER! Cooper loves boxes lately!

Quick Update

This is a random post, but a quick update:

Having Easton home has been difficult, but joyful. It's a lot of work and a lot of stuff. It can be quite overwhelming. He has a lot of oxygen tanks and a concentrater. The concentrater has a 50 foot cord. We still have the feeding pump. Chris isn't working evenings anymore, for the most part, so that is helpful. Easton isn't clingy with his smiles. Talk about brightening your day! He can be a bit clingy, but is getting better. We had three appointments in one day and I think he had a bit of PTSD so clung to me the rest of the day and the next day. He is sleeping better, finally! He loves to sleep on his side and if he wakes up fussing he is starting to put himself to sleep. We love him so much and are so glad he is a part of our family!

His post op appointment went GREAT! They said his chest xray looked amazing! His heart has shrunk back to normal size!!! They also said his incision looked great. We mentioned his heart rate being super low now and they said that was wonderful because that shows his heart has now compensated for the surgery. It was so nice to get good news. We know we have a long road still, but some of the hardest is behind us. We just hope we can figure this feeding stuff out. We will be moving him to his own room soon, too.

Cooper is going to sunbeams. He loves having brother home and laughs that he can make brother smile.

Our Little Stud Muffin

A Transition

It's always a transition coming home. First few days are rough as we figure out a routine that works again when you have different meds/meds times, oxygen, etc. Today was just a surviving day. It has worn us all out.

Going home!

We are going home today! We are so excited and so grateful that this surgery journey was fairly smooth because not all are. The NP said we are never out of the woods but that he is much more stable than before. It is hard to comprehend because he seemed fine. It is a weird feeling. We no longer have to keep information in a binder to be called each week. We no longer have to weigh him or document his SATs. We hope we won't be at the hospital for a while other than cardiology and GI appointments. We are going to work with GI on feedings and OT that comes to the house. It is crazy. I don't think I have processed that this has all happened yet. I am happy, but also unsure of how to feel. I am so excited for us to be home together again. Now if we can figure out the feeding issues that would be awesome!

Not sure how we're going to move around the house with oxygen and a feeding pump and occasionally a pulse oximeter. We'll figure it out though. Just happy to be home!

Follow Your Motherly Instincts

It has been an eventful couple of days. Two nights ago it was mentioned that now that he has had his surgery, maybe his feeding issues were all gut issues and one of the nurse practitioners wanted to go back to a formula Easton struggled on. The one I told them I thought he was allergic to. I didn't feel comfortable with that. She said we could talk about it the next morning. Morning rounds happened the next day and the cardiologist mentioned we were changing back to Elecare. I was surprised as I had expressed I didn't feel that was good. The nurse practitioner shook her head and said yes. They left and I wanted to know WHY we were even trying this with all the feeding issues we have had and we know this Vivonex TEN is working. The NP came back to discuss it with me. She said the Vivonex isn't meant to be taken orally. Ok, so it was my understanding that if I wanted him to ever feed by mouth we needed a different formula. I should have gone with my gut.

Night time hit and it was awful. Easton was in so much pain and there wasn't anything we could really do to stop it. He was already on Tylenol and a pain med, we gave him gas drops, and tried hot packs. He was miserable. I have never seen him so uncomfortable and in pain. He cried and cried. He was up all night. Myself and the nurses and techs took turns holding him throughout the night. The slightest movement and he would wake up. He didn't want you to sit, but to stand. The nurse even thought it was the formula because she had him the night before and he had never been like this! Finally around 3 am I said that was enough and had them contact the nurse practitioner. I wanted him off the Elecare. I wanted pedialyte for a few hours to give his belly a break and then to get him back on what worked! He continued to be in pain, but as time went on the next day, today, he became more comfortable. He is back to himself and sleeping well. Why don't doctors trust parents more? And why don't is parents believe in ourselves enough to put our foot down!? The NP on today said she never would have changed anything and isn't sure why the other did. She spoke with dietician and she said he CAN take the Vivones orally, it just tastes bad, but so does the Elecare. My goodness! All that just to put him in pain! We would have gone home tomorrow had this not happened. Now we are back to figuring out feeds.

He did take 4 mls of a bottle yesterday. Not much, but a huge step for him. It has been months since he has taken a bottle. He more chewed on the nipple than sucked, but we will work on that. He didn't gag, choke, puke, or anything. They were very please. Today he didn't do as well, but with last nights tummy issues, I wouldn't have either! We will try again tomorrow. Hoping to move feeding tube to ng in a week, if tolerating the nj feeds. Then a week after that if all is going well we can start doing some rice cereal/baby foods. I hope it goes well, but who knows at this point. Physical therapy has also been in to work with him. He really is doing well. 

He has had a low heart rate through the day and even lower (low 90s) when sleeping. His heart rate will lower as he gets older, but it will be watched closely in case he ever needs a pacemaker put in. (What a journey! We are learning so much!)

We hope to be home by the end of the week and I can't wait! I sure miss seeing my other two boys everyday too!

Physical Therapy

We love the physical therapy girls! They have taught me a lot and Easton loves them!

He looks night and day from two days ago!

Recovery Floor & Smiles!

Today was a good day for Easton. He had his last two chest tubes removed. A new IV placed. A heart echo which showed his heart isn't squeezing where they removed his sano. Disappointing and not ideal, but it makes sense. We asked if this meant we were closer to transplant than farther away and she said, Oh, no! So that made us feel better. He is less swollen and acting more like himself. We had smiles today!!! We love seeing those again. We learned he has a bad reaction to morphine. His little eyes swell up almost instantly so no more morphine. We also moved to the recovery floor which is where you go when you are getting closer to home. Yay! Hopefully by end of week!