update

Michael is doing much better today than he was yesterday. He is still a little pale, but looks way better than he did. He is much more comfortable and easier to calm down. Bryt and I actually got a little bit of sleep.  He has been on the CPAP machine all night and has done very well. They were not able to get a second IV in him so today he is getting a PICC line. We are not thrilled about it, but hopefully it will cut down on the amount of pokes he  gets. The cath lab is still scheduled for tomorrow. We still have pretty high hopes for it.

Back on CPAP

I haven't written an entry in quite a while. It's hard to get your thoughts out when your emotions seem non-existent. I have been having a pretty rough time the last couple weeks. I checked out and didn't want to deal with any of this anymore. People would ask how he was doing, and I would just say "fine, he's still in the hospital... but he is doing ok."  Luckily for me, that was true for a little bit. He obviously wasn't doing great since he is still in the hospital, but he was pretty stable. He wasn't really doing much but sleeping, eating and pooping. I kind of took it for granted and skipped a couple visits. This last week has been nothing but scary though. Last week he started getting pretty pale and having a hard time breathing. I immediately felt guilty and stayed the night with him. I have made it a point to be here and hold him and love on him every day since. It gets exhausting going and back and forth, and working, but  I want to be here for him every day. I know the nurses are great, but they don't love him the way Bryttney and I do. It makes a difference when we are there. Michael knows we are there, and we know when he needs something.
 We have had to discuss surgeries and transplants again. I am not to fond of either of them, but at this point I am willing to do anything. I hate seeing him so uncomfortable. I have no idea what he is going through, but watching it makes me cry a little. He has been so strong, it's incredible what he is capable of. Today has been very hard for me. We walked in this morning expecting to see our little guy smiling away, but when we got there he was extremely pale and very whiny. Both of us could tell something was wrong with him. his numbers look ok, but I don't think I have ever seen him this pale or this fussy before. It was very stressful trying to comfort him because Zoey really wanted to hold him and was getting  a little jealous. I ended up taking her over to a family get together while Bryt stayed with Michael.  It's so nice to see my our family. They are so incredible and always manage to cheer me up. Even if I'm having a really hard day like today, they are always there to pick me up and put a smile on my face. I don't think I could have married into a better family.
Bryt and I are sleeping at the hospital again tonight. Michael has been has been in and out of fits all day. His Heart rate is higher than normal and he is breathing really fast. Bryttney has been trying to comfort him all day, but it does not seem to be helping. He is just very uncomfortable. They have been giving him extra Lasix to help with the fluid in his lungs, but that does not seem to be working. After a long and exhausting day in the CPCU they decided to move him back down to the CICU. Once he got there they put him on the CPAP machine and took some labs. He didn't like being poked, but the CPAP machine has calmed him down and he is finally asleep.
After they got him comfortable he started having arrhythmia again. The extra Lasix they gave him threw off some of his electrolytes. Now they need to put another IV in to give him back electrolytes. They just put a new one in him this morning, but it is a scalp IV. They don't want to put it in the Scalp IV so they are going to try get another one his arm. Seems like every time they try his arms the stupid thing blows. I hate when they have to give him IVs, they always have to poke him like four or five times.
He is doing better now that he is on the CPAP and back in the CICU. Still not good, but better than he was doing most of the day.

Keeping Stable

The last couple days have been pretty busy. Michael will remain in the hospital through this weekend. They will keep him stable without changing any of his medications to keep him comfy. We spoke to Michaels doctors and feel confident about our next step. Michael is so strong. I have confidence in our surgeons and our cardiologist and his team of colleagues. Our next move will be into the Cath lab.This will be this next week either Tuesday or Wednesday. Because this is still a high risk procedure they will have the surgeons on standby and have the operating room available as well. 

The Cath lab is where they will go in through the artery near his groin and follow that up to his heart. This will be mostly diagnostic to see if the Cath Dr thinks ballooning his valve will be worth a try. This tears the current tissue open to allow heavier blood flow. If they decide to try this they will do it then. If not then they will back out and we will discuss surgery options. They will know right away if this is successful. If it is not then they will see too much blood flow and regurgitation between the atrium and ventrical. The surgeons will be on standby during this time so that if they balloon the valve and it doesn't start working as we need it to then he will be taken to the Operating room for his next open heart surgery. They have ordered the valve needed. If this valve is used we need to keep in mind that it's larger than the opening of his current valve. His opening is only 10cm and the smallest mechanical valve available is 15cm. What they describe is what I think of as an hour glass. They wouldn't be making it go in the opening but instead set it just above and try to adhere it to the tissue there. These mechanical valves are also prone to create blood clots so he will be put on strong blood thinners. Our cardiologist has been sure in letting us know that heart transplant is still on the table if things were ever to get to that point. I have faith in this next procedure that it will work for Michael for as long as we need it to. Even if it's only a few months. It will help him gain the weight he needs for a less risky valve repair. Any risk we can eliminate will be great. 

This little guy is amazing. 

He has been eating larger amounts by mouth so hopefully we can get his NG tube removed soon. Whatever he doesn't finish eating we put into a large syringe on a timed pump so that he still gets the full feed. The pump they use is on the top right of this picture. He's just over 9 lbs

I didn't know I was aloud to dress him until recently and the nurses love that I'm finally bringing in clothes for him. I was so nervous to work around the cords and monitors but they've assured me they love it and after a few times of having them help I'm able to do it myself. I have to stretch the one sleeve to fit over his IV but it's worth it to see this little guy looking so good. I had so many newborn clothes that I was afraid I wouldn't get to put him in but he still fits in them. 

His favorite toy right now is this Monkey. The monkeys cheeks light up red as it sings and he thinks it's great. He gets so sad when it stops.

He gets tired fast from playing so hard. I love bringing in his personal items to make it more like a crib at home. I'm getting tired of that sterile blue color. I love the brightness his things have.

He also loves his big sister. She is laying in the crib with him to play and he loves it. They have so much fun. Zoey loves to entertain him. She's such a great big sister. The best he could have. She is so wonderful.

Speed Bumps

Last night Jaron and I had so much fun. We were able to go see The Avengers and it was Amazing! We had so much fun together. Laughing releases a lot of stress. And so does an action packed movie.

This morning I headed up to Children's with Zoey. She woke up wanting her baby Michael so I got her ready and headed up to Aurora. We walked into Michael's room and about 6 people were standing around him. I thought it was rounds, where they come in and discuss updates, but it was actually because Michael had gotten sick over night. They took an Xray this morning and he had more fluid build up on his lungs. He was breathing really heavy and his oxygen levels were down. They upped his diuretics to drain the fluid and flush him out again. They also put him on oxygen to help him breathe easier. This unfortunately was not caused by his arrhythmia, and we're guessing when we had rushed him back in a week and a half ago that it wasn't his arrhythmia then either. His mitral valve is still to tight not allowing proper blood flow to the body. This in turn backs up fluid to the lungs, which backs up into the right side of the heart, which was causing pressure issues there this morning as well.

Another echo cardiogram was done and sent to our cardiologist. He went over the information gathered with his team of colleagues, which include our surgeon, and the Dr that works in the Cath Lab. This is now where we make a decision. The doctors will all think over night regarding Michaels condition and decide what the best move from here will be. The least risky so to speak. We believe the Cath Lab is the next step depending on what the surgeon feels. He's been in Michaels heart and he's seen the valve. He knows what we'd be working with.

During all of this I had a very energetic little girl and a fussy baby that both needed attention. Zoey didn't take a nap for me today and Michael finally fell asleep after a few hours of Zoey.

She wanted to hold him like this... 

And she wanted to cover his mouth when he'd cough

And she jumped up and down really fast to make him laugh

And finally towards the end of the night we got to see some fish. She sat quiet for about three minutes. Then she looked through a magazine with me and found some perfume she liked and ripped out a piece of the page to carry and sniff. By the time we got back upstairs she was so tired she rubbed her eyes with her perfume covered hands which burned. Poor girl. Daddy washed her up and we got her out of there. She was so ready to go home. Jaron is spending the night tonight with Michael. We both felt that one of us needed to stay with him. I'll head up first thing in the morning to get a jump start on what seems to be a very long and busy day. Sweet Dreams. 

Movie Time

Zoey woke up this morning wanting to watch a movie with Michael. We were able to go see him this afternoon and she had me turn on a movie right away. The hospital rooms have a tv in each room with certain movies available on demand. She chose the Bee Movie. She sat right up and put her hands out for Michael. 

During the movie she got curious and started examining her baby brother. She was watching his feet move and looking at his arms. She knows his owie is on his chest and points to it. They both fell asleep on me and I was able to take some pictures of us sitting together. My heart is so full of emotion for my children.








Jaron and I worked hard last night trying to get our Thank you's done for those that have helped us in so many different ways. I found the perfect picture of Michael and we had so much fun working together until it was just right. We are so full of gratitude for the people around us. Our families and friends have gone above and beyond to help us in whatever ways possible. Someone popped into Michael's room yesterday to ask permission to have him in a movie she's making. She had my permission and took a couple pictures of my strong little man. Recently a video was made and put on you tube for supporting children with cancer. She got the idea from that and is putting together a video for Cardiac Kids. She's using the Biggest Loser theme song "Proud". I hadn't heard the song yet but last night cried while listening to it. She's going to email me the link to the video as soon as she's done and I can't wait to post it for you!

Tomorrow

This weekend was wonderful. It was long, but quiet. We were hoping for Michael to be 'boring' this weekend. That was how our Cardiologist put it. We are so glad that his medications have his arrhythmia contained and that this weekend was 'boring'.

My sister came to visit from Utah and we were all so excited to see her. She stayed with me at my house and we got to catch up on everything. We were so busy talking at one point that I hadn't realized Zoey getting into my makeup. Isn't she fancy? My sister also got to visit Michael and see him for the first time. He's been looking so good. Every once in a while he still looks a little pale but we mention it to the nurses every time we're concerned. I think they're aware that I am extremely paranoid since he's been back in the hospital. We're both terrified and excited to bring him home again. I'm going to be busy sanitizing again and preparing his area in the living room for his arrival hopefully sometime this week. I'm not sure how big the monitor will be, I'm just glad we're going to have one. He's eating almost his full feeds by mouth as well so hopefully we'll be able to take him off the feeding tube soon as well. 

Visiting with my family this weekend was so much fun. We have been so blessed to have our parents and our siblings so close. Even those that live out of state make such an enormous effort to help and support us throughout this time. I wanted so badly to bring Michael out and show him off. It's so hard to know that I have this adorable baby waiting for me so far away. I wish I could put him in my pocket and take him everywhere I go. This afternoon I took a little outfit to the hospital so I could take pictures of the handsome little man. I hadn't thought about the IV on his arm but his nurse was so sweet and helped me stretch the sleeve of the onsie over his IV and then do the same with his button up. He is such a stud. He weighed 9lbs as of yesterday morning and it shows in his cheeks. I had a little picture time with him and he cooperated for the most part. I'm so excited to get pictures printed and sent out. 

Smallishly Large

Michael is 8lbs 8ounces and only 6 weeks old as of yesterday. He fits in the nook of my arm and makes tiny little adorable sounds. His tummy can only hold two and a half ounces of milk and he snores like his daddy only quieter. His hair has a red tint to it and I compare it to the color of my brothers beard when he has one. His fingers are so extremely small but they have a tight, firm grip. He scrunches his nose when he smiles big which is usually when he's farting. The size of his heart is compared to a strawberry. He is my baby Michael.

Because of him I've found my faith. Because of him I've grown closer to my husband and daughter. Because of him I no longer take my own health for granted. Because of him I can listen to my daughters heart beat when she's sleeping and appreciate how steady it is. Because of him we've met so many wonderful people. Because of him I appreciate life and how absolutely wonderful it is.

Having Michael back in the hospital is trying. I miss him so much. Bringing him home was my chance to finally bond with my son. I miss holding him and cuddling him and waking up with him at all hours of the night. Seeing him today was wonderful. Zoey loves going to see her baby Michael and she holds him so carefully. She understands she needs to be soft with him because he's sick. Both of my children are so strong and help me gain strength when I watch them. It has been great to see them together.

Michaels rhythm was steady the majority of the day. He had a 15 minute episode with his arrhythmia but was able to pull out of it himself. They are thinking of moving him to the CPCU on the 9th floor tomorrow where he can continue to grow under careful watch. His arrhythmia is still making the doctors nervous and want to make absolutely sure that he won't be having these 15 minute episodes at home. We were assured that we'll be sent home with a heart monitor when we are able to get to that point but it won't be until after Monday. Our surgeon says if Michael needs surgery sooner than we want him to that he is pretty optimistic after actually seeing the valve he'd be working on. This makes it no less risky than we've been talking about before. There would still be a chance of the valve leaking too much fluid and Michael getting sick. He's been eating much more by mouth and having less fed through the tube. He's also showing signs of hunger in between feedings which is wonderful and he's gotten a few snacks. His nurses have assured me that when I'm not able to be there to cuddle him that they are more than happy to. I don't want him sitting in a hospital bed alone and I know these nurses now. I know their names and I know I trust them with his life.

I am surprised how incredibly strong we've been. I am proud of myself and Jaron and would like to give us a little pat on the back for good sportsmanship. I didn't know we were capable of so much. Emotionally and Mentally and even Physically. This wears on every aspect of our lives. I am being blessed with patience, understanding and humility. The blessings are endless. Every time I see Michael I feel I am witnessing one of Gods greatest Miracles. How can we not be thankful for this? I pray that Michaels heart will continue to be strong and that his arrhythmia will be controlled. I pray for him to grow so that I can hear him laugh and play. I pray for myself and Jaron to remain steady and calm. I pray for strength. God give us strength for our children.