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.

Weight Gain

This morning started out pretty emotional. Zoey woke me up by tickling me under my chin. Once I sat up she smiled and asked where the baby was. I had to tell her that Michael was sick again and he had to go back to the hospital. She started crying right away and telling me no. Of course I begin to cry too. We went on like this for a few minutes until she decided that she was alright and wanted to go downstairs. She watches Yo Gabba Gabba every morning religiously. She has to watch her Robot (Plex).

I call Michaels nurse every morning when I wake up and every night before bed. This morning his nurse was still seeing some irregular rhythm and his heart rate was dipping down a little too low (70s & 80s). They decided to tweak the arrhythmia meds to see if they could get the results they needed. So far so good. His heart rate is now around 100 - 120s. This is much closer to where they want it. This evening his nurse said she hadn't seen any arrhythmia since she came on shift. This is a very good sign, the more stable his heart rate is, the more effective the blood flow is. After talking to Michael's cardiologist yesterday we know he needs this stability to gain weight. The risks for surgery get a little lower with every bit of weight he gains.

We brought Zoey to see Michael this evening and she was thrilled. She wanted to sit with him and hold him, and do all the things she'd done with him at home. She loves being a big sister and having a little baby to hold and kiss. She slobbered on his forehead of course. Tonight we all watched Surfs Up and had some snacks. Zoey had a lot of fun.
Michael's  nurse wanted to make us aware of a recommendation she had thrown out during rounds this morning. She had asked about getting him a G-tube. She explained that the current feeding tube was intended as a short term fix. It helps babies get nutrition, but it can come out easily and there is a chance he could cough it up and inhale it. Since it doesn't look like he is gaining weight quick enough, she thought it would be a good idea if we discussed getting him a more permanent solution. He's also getting a little more mobile which increases the risk of him pulling out his current one. I can't keep him swaddled forever.  The G-tube is like a direct link to his belly from the outside. He wouldn't have a tube down his throat anymore, and there is no risk of coughing it up and inhaling it.
After hearing this, my first thought was definitely against it. It would be another surgery to get the "button" placed, and he would have a permanent tube coming out of his belly. I also thought that he would have this "button" for the rest of his life. She reassured me that he would only have it as long as he needed it. It would create another small scar on his belly, and the surgery is pretty quick and easy. I warmed up to the idea after researching it and getting some questions answered. If Michael doesn't gain weight, then the risks of his next possible surgery will remain high and the odds will not be in our favor. We need him gaining weight. He only drinks about an ounce by himself.  His goal is just over two ounces so we have to tube feed him over an ounce every time he eats. This evening he drank the full amount from a bottle for us! We were shocked!  He also slept through his next two feeds with a little awake time in between. The reason he is having a hard time eating is simply because he cannot endure it. He just gets too tired and passes out before he is done with the volume. This G-tube thing worried me at first but I am convinced that this may be the only way to get Michael to start gaining the weight we need him to. I need me a chubby baby :)

Arrhythmic Back Up

Ever since Saturday night Jaron and I have been trying to keep in touch with everyone to let them know the situation with Michael. I can't believe I'm still forgetting people. I'm trying to keep everyone up to date and unfortunately my phone can't keep up. The battery is going through more work than ever. I'm looking into getting one with a keypad so that I can type on it faster. 

Michael is again, Critically Stable. The poor thing must have been having arrhythmia issues for at least a day before his poor little body couldn't compensate any longer. The doctors are still amazed as to what he is capable of and how fast he's able to recover from something so aggressive. The first time I left Michael at home since we'd arrived here on Tuesday was Saturday night. All I was doing was having a quick dinner. When I got home I'd notified Michaels nurse of what he was doing to confirm he was probably having an issue breathing a few minutes before even if he wasn't now. I then notified the CICU at Children's of the issue and they asked me to call an ambulance so that we could get up there as soon as possible. My heart broke and I fell apart. I'd never had to call 911 before so that they could send an ambulance. I live 6 houses up from a fire house and was talking later on with the paramedics with how lucky we are. I was given an permission to walk Michael over to the fire house if I ever thought they were taking too long to get to my house as long as I called 911 on the way. The paramedics were wonderful and Michaels numbers were showing fairly normal on the ride to Children's. Once we arrived Michael had been so dehydrated that they couldn't get an IV in him. They tried both hands, both arms and his ankle. We finally went up to the CICU and they called some nurses down from the NICU to have them put one in and the only place they could get it was back in his scalp. The alarms that night were going off every few moments but its also the best sleep I'd gotten since getting home. I was unable to feed him again and the nurses were monitoring everything. I fell apart and shut down. I slept. His mitral valve was causing pressure to back up to the left atrium which enlarged and backed up fluid to the lungs which caused him to struggle with breathing which then backed up fluid to his liver which began to enlarge as well. After being put on a lot of diuretics his fluids decreased and his liver and lungs are looking much better. The underlying problem is still his mitral valve. 

Today he is looking pink again and they have him on the medication he was already on plus one more, hoping to get the arrhythmia under control again. In speaking with our Cardiologist we are giving the medications one more shot. We need Michael to be as large/old as possible for this next surgery and the medication is the only thing that's going to get us there. If his arrhythmia breaks through this medication as well then by the end of the week we'll be having to look into the most least risky procedure which is still more risk than we'd like to take. Even if we can get him to gain another few pounds I would be happy. 

I was so excited to be home and working with my own environment and knew I'd end up back at Children's at some point I just didn't expect it this soon. My prayers are stronger than ever and so is the support we're getting from everyone around us. My baby is fighting harder than I've ever had to and he's showing miraculous strength. He was so happy to see me this morning he was giving me great big smiles. The nurses are telling me that they are surprised he is smiling so early and he was actually engaging in sound play this morning while "talking" back and forth with me. He's my little archangel, warming my heart and changing my life. Thank you everyone for keeping us in your prayers. 

 

Uncontrollable Emotions

We had a pretty long night, his alarms were going off for the majority of the time. He seems to be doing ok when you look at him. He is a little pale and clammy. But he is wide awake and looking all around. His heart rate is jumping all over the place. He is not in the atrial flutter, but he can not shake this arrhythmia. The docs are all pretty worried about him. They think he has been having irregular rhythms for the last couple days and he just couldn't tolerate it anymore today.  The rhythm specialist wants to try putting him on a couple more arrhythmia medicines, but I think everyone is starting to look more at the mitral valve.  They want to get him on the meds to prove that it is his mitral valve.  The docs have told us multiple times operating on a valve this small is not ideal, but they may not have a choice in his case.

Bryt and I are both exhausted. I didn't sleep last night. I was up all night talking to the nurses and getting all my questions answered. I think it was the first night Bryt has gotten any sleep since we left here on tues. She has been going 24/7. I can't imagine how tired she is. She told me this morning the alarms were comforting and she was finally able to relax enough to sleep. 

If you read my last post, you could probably tell that I am not handling this well. I have been trying to get through this with a smile on my face, but I had a small breakdown last night. I think I hurt some feelings and maybe made people fell uncomfortable. I feel guilty for it, but I also recognize that I am a mess and don't know how to control my emotions during this. I am sure other people have been in similar situations and you can't help but get frustrated at times. I slept for a couple hours this morning, so I feel a bit better now. Thinking a little more clearly than I was last night. 

This is just hard, and when you are exhausted and stressed it doesn't make it any easier. I am very thankful for all of my wonderful friends and family. You have all made this so much easier. The women at our church have been bringing us dinners which has been amazing. It is nice to see people and visit with them for a little bit. I can't even begin to count all the things our family has done for us.  I feel much better this morning. Michael has not improved at all, but Bryt and I are doing a little better than we were last night. 

Call 911

So here we are... at childrens...again. The entry for today was going to be about how good he was doing and how we all love him so much.  He has been really active and seems much more comfortable at home with us than at the hospital. Bryt went out for dinner with my mom and sisters to celebrate mothers day. I was not too thrilled about being home alone with him, but I knew I would have to do it eventually. I was fairly grumpy when Bryt left, but the first part of the night went pretty well. I made some dinner and watched a movie with Zoey.  I fed Michael his bottle and then gave him the rest in his tube. It was the first time I had actually had to use our pump. I didn't realize you had to pull  open the bag more after you took the cap off, so when I started pouring in the milk it spilled all over the place.
After his feed was done I took him to the couch to cuddle with him. He started getting pretty fussy and then started grunting quite a bit. Then he started doing this weird grunting/choking thing. He was straining really hard for each breath and it looked like he was not getting any air. He started getting a little pale and then started sweating. When I noticed he was sweating I  started to panic. I called Bryt and told her to come home. Zoey was starting to freak out. She had already been upset that Bryt was gone, but now I was ignoring her too. I feel so guilty for expecting so much from my little girl.  I am getting so burnt out on all of this. Bryttney rushed home and brought a pack of worried women with her. They all came in and Bryttney called the  CICU. She explained what was going on and was told to call 911. By this point I was pretty much checked out. There were sirens the second Bryt hung up the phone. There were women all over my house saying how bad he looked, Bryt was balling and Zoey was screaming.... I just went numb. I am exhausted and I don't know how to deal with this anymore. Then I saw one of my sisters pick him up wrong and it was just too much.  I don't know how to deal with this. There is so much up and down, and so many people wanting to see him and love him. I wish he was healthy and that people could come pick him up like a normal baby. I wish his cousins could come see him and play with him.  It has been so nice seeing people outside the hospital again. I love having my family and friends over, but when we are both in that freak out mode, having more people around is not very helpful. I just wanted to scream and cry and throw a fit like a little kid.
The ambulance got there within a few minutes and 3 or 4 of them came in to look at Michael. They said he was looking good, but since he had just had heart surgery they didn't want to take any chances. Bryt got to ride in the Ambulance. I drove down separately.
When I got back to his room they were just taking him to get his Xray. His lungs look a little wet and there might be some sort of viral infection in the right side. After he got back from his Xray, they started trying to get an IV in him. They tried both his hands and both his arms. Then they called in a third nurse and tried his leg.  This was extremely frustrating! Michael was balling and Bryt and I both wanted to comfort him. Each time they poked him he started screaming and crying. We just sat there quietly with tears in our eyes. Then they brought in a fourth person to try, she was looking at his neck. I couldn't handle it any more, I tasked them if we could just go to the CICU and try the IV up there. There was a little bit of conversation and then a couple minutes later we got to move to the CICU.
When we got up here, they called down some NICU nurses who tried on one of his arms and then got one in his head. They drew their labs and got him hooked up to two pumps of meds. His heart rate is not very steady, it keeps dipping down to the 70s and 80's and then jumping all over the place.  We are ready for sleep. This is exhausting, it's very depressing and really makes you feel like giving up.