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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!

Lots of Progress!

Today was overall a very good day. Easton isn't on any continuous meds through his IV so all the poles but one are gone. They are up to 23 mls per hour on his feeds with the goal of 36. No retching so far. He had the line in his neck taken out, one in his arm, and one in his foot. He had his pacer wires removed, his RT line to his heart, and a chest tube. His nitric oxide was removed and he has done well, so no pulmonary hypertension. His high flow was also removed and is now just on oxygen. He was high SAT-ing so they lowered his oxygen to 1 liter. All great things. The only negative today is he seems very uncomfortable and in pain. Meds aren't working wonderfully, but he finally settled down. They let us hold him, but not for long because he wouldn't calm down even with being held. His eye lids are swollen, they are giving him benedryl. They are hoping to move us out of CICU tomorrow and to the recovery floor, which means closer to being home. They do think he is in pain and say it's going to take him a week or so to get used to the "Glenn headaches." It's hard to watch him so uncomfortable. Hoping for a more comfortable day tomorrow.

Having things removed:

A Good Day

Today was a good day. He is less swollen. He has remained asleep all day only opening his eyes a handful of times to look at us. He knows we are here. His numbers have looked good. They have started to ween him from oxygen, stopping at 60% for today. He was at 90%. They are also weening from nitric oxide. He is on this to help with the pressures in his heart. Once off this they will know if he can keep his pressures good, and if not then he probably has pulmonary hypertension and will need a medicine to help control it. We will know come morning. He had his nj feeing tube placed. They had an X-ray machine brought into room to check placement. After three tried they finally got it and turned their heads and Easron decided to yank it out. So back to trying again and another X-ray to check placement. Finally it worked and we got it taped down! We were also told we will always want to keep his head elevated. I guess the Glenn works by gravity. If he lays flat for too long he can get a headache and even have swelling. Trying to do that should be interesting.

Tomorrow is the big day. It all depends on him, but the goal is to take out pressure lines, possibly chest tubes. Take off nitric oxide. Continue to ween oxygen, which he will likely go home on some. Take catheter out. Increase feeds. Ween off some meds. We can hold him again too!!! Goal is to be to the third floor, out of CICU, on Sunday. When you move there, it means you're close to going home!

One thing about being in the CICU is you don't have to leave to get things done. Instead of going to Images to get his NJ placed, they did it in the CICU and then brought an xray in to check placement. On his xray you can see his pacer wires (if needed after surgery), arterial lines that check pressures in parts of his heart, his wires holding his chest closed, etc. 

A good, quiet, uneventful day.

We Made It--- The Glenn

We did Easton's pre-op appointment Tuesday. We had a history and physical done, a chest X-ray, and blood work. He didn't even cry when they drew his blood. Just smiled and talked. Silently fierce!

The night before surgery we had to do a special CHG bath and also put ointment in his nose. Both help decrease bacteria. We packed up everything ready for morning. We had to change to pedialyte at midnight then nothing after 4:30am. We were up at 415 showering and packing the car. Cooper woke up and gave Easton kisses. He sure loves him. Cooper stayed at our house with Grandma Frederiksen and Chris, Easton, and I were on our way. We checked in and were looked at, explained some things and signed some papers, and and walked into the surgical area. Handing him to the anesthesiologist to walk away with him was not fun. Little Easton just looked around as they walked away. Knowing he wouldn't feel or look great and wouldn't be smiling again when I saw him broke my heart. Here is how it all went:

745 Easton went back. He was just looking around as they carried him back. 

854 first call he is doing great on all the anesthesia ready to start surgery and work through the scar tissue, the longest part

1045 Still working through scar tissue. Another hour probably.

1225 Going on bypass. Can now start Glenn portion of the procedure. Easton is doing great.

205 Glenn done. Off bypass machine. Echo looks good. Keeping chest open for half an hour to watch for bleeding.

325 surgery is done. Chest is closed. Easton's heart is bigger than normal.surgeon hopes it will shrink now that it doesn't have to work so hard, but it isn't guaranteed. Function is mild. He said it could get better, but not guaranteed. It is sad and scary to hear because both are signs of heart failure (enlarged heart, poor function). Pressures good. Not yet extubated.

We went back to the CICU to see him around 430. It was heart breaking. He is swollen pretty good chest and above. He also seemed to be in quite a bit of pain. He kept crying and painfully jerking his body. He would quite down for seconds and do again. He was pretty unstable. His oxygen was in the 60s with oxygen, pressures were off, and he was just uncomfortable. We tried lots of things to try to sooth him because holding him isn't an option right now due to a line he has in him. Hoping to hold him tomorrow. He liked hearing my voice, but it wouldn't stop the pain. Doctor was afraid she was going to have to intubate again but really didn't want to. With this particular surgery, it is best for their lungs to be working themselves so they extubate pretty quickly. She kept trying things and giving him time and finally he stabilized after a blood transfusion, some type of gas to help pressures through his nasal casual, and the high flow nasal cannula and some Ativan. He looks a lot better now that he is stable. His skin is a pretty pink. They say the first 24 hours are the worst. I hope so. I can't wait to hold my baby again and see him smiling again.

Update

It is difficult to keep up with a blog when you don't have Internet at home! To sum up the past few weeks until I can really update with pictures and such:

Easton has been home since Feb. 2. It has been so wonderful and exhausting! I give 14 doses of meds, 18 the past week since we found out he had an ear infection. Constant diaper changes between two boys. Attempted potty training and it went ok. So many demands as a mom! He usually sleeps well, but due to ear infection he wakes up a lot at night. Chris and I laughed when I said, "he slept pretty good last night." Chris replied, "yeah, he only woke up five or six times." We laughed because we were completely serious! And six is still a lot.

Cooper ADORES Easton. I find him kissing him or snuggling up to him. He will sit next to me and put out his arms and say "I hold my baby brother?" He loves to hold him and to hold his hand. He loves to play peekaboo too. When Easton cried once he yelled, I'm coming Easton! He will get me diapers and wipes. Even likes to wipe Easton's mouth if he spits up. He will tell me if Easton is crying and I am not right by him too.

Life is good. Today is Easton's second open heart surgery, the Glenn. Bittersweet day.

Crazy Silly Kids

Cooper was being silly while I was trying to take a picture of these two! Love them!

Bathtime!

This little man LOVES bathtime. He likes looking at himself in the mirror, too. He isn't a fan of being taken out, but is getting better about it. I love me a yummy smelling baby!

Brothers

Cooper loves to hold Baby Brother.