Wednesday, May 30, 2012

Giddy Relief

It felt like the calm before the storm. Waiting outside for Michael again. This procedure was not as invasive as his first surgery. I don't know if anyone slept well last night. I was able to hold him and cuddle him for hours last night. I decided to fall asleep with him in my arms but felt a twinge of guilt because I knew he'd get a better nights sleep in his crib. I changed my mind and laid him down so he could get the rest he needed before his big day.  

I couldn't fall asleep and even after I did I kept waking up hoping that maybe some time had passed. It was finally 6:30 this morning that I woke up and knew he'd be going in for his procedure soon so I wanted to hold him for as long as I could before they rolled his bed out. I went and lifted him up realizing that they had him on an IV drip  that attached to the other side of his bed and the cord wouldn't reach to the chair. NO! I broke down and cried of course. Not being able to hold my little man before his procedure. They would have had to move a lot of things around for me to be able to hold him so instead I stood by his bed and cradled him in my arms right there. I kissed his head and sang him a song and the doctors started coming in to talk everything over with us. It happens so quick.

After everyone was on the same page and all our questions were answered they began to get him ready for his short ride down the hall. The nurse was quick in prepping him to go so I was able to hold him for a few minutes before they came to get him. He was wide awake and looking around and smiling. It was so great. I knew he was going to be alright but that didn't make the waiting any less difficult. I was so excited to see him awake and colorful and healthy. I still am! He's letting the anesthesia wear on as long as he can. It's already 8pm and he's just now starting to wiggle around. 

They keep the breathing tube in until he's fully awake to make sure he's going to breathe on his own before they remove it. They just have it on room air with a little pressure which is they're last step before removing it. He doesn't like it at all. He tries to cry out but I can't hear him. I'm keeping a close eye on him so that when he moves I can go to him and pat him to make him calm again. He's doing so good. 

We had some of our family waiting with us at the hospital to make waiting a little easier on us. He went in at 7:30 this morning and we weren't able to see him until about 2 this afternoon. The doctor that worked on Michael in the CATH lab came in to check on things and you could see him glowing. I've never seen a doctor so proud of his accomplishment. This procedure had to have been a big one because everyone was congratulating him and patting him on the back. It was great to see his doctors so happy and successful. The prayers that were said in their behalf worked miracles. God truly guided their hands and inspired them in their actions. The doctor doing the procedure wasn't sure if he should go up one last size for the last balloon but he felt impressed that he should do so and it was wonderful that he did. The back up pressure behind the valve has been as high as 13 and 14 which is really high. When he's been relaxed it's been as low as 7 and 8. After this procedure the pressure is all the way down to a 4! Outstanding!! I feel absolutely giddy!

This unfortunately doesn't mean that he won't need another surgery because he will. This just buys us the time he needs before he has to go in. The valve still needs to be replaced but the older he gets and the more weight he gains lowers the risk of that operation by a lot. This will allow his body to grow without the fluid backing up to his lungs and in turn harming them. We look forward to see him gaining weight and growing. This little guy is meant for some big things. Look Out World!

Thank you everyone so much in for being with us through this time and helping us push forward and keeping optimistic. Our prayers for Michael have all been heard and answered so many times over. This last Sunday my family and friends fasted for him and this procedure. Next Sunday we will be fasting for our gratitude and Michaels quick recovery. We welcome those that would like to join in and thank you again. 

Tuesday, May 29, 2012


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.

Monday, May 28, 2012

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.

Saturday, May 26, 2012

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.

Wednesday, May 23, 2012

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. 

Tuesday, May 22, 2012

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!

Sunday, May 20, 2012


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. 

Thursday, May 17, 2012

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.

Wednesday, May 16, 2012

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 :)

Monday, May 14, 2012

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. 


Sunday, May 13, 2012

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. 

Saturday, May 12, 2012

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.

Friday, May 11, 2012


I remember when I was growing up, waking up in the middle of the night to the sound of my mom doing laundry right outside my bedroom. It was comforting to know that she was awake and still so near. I never wondered why she couldn't sleep. It couldn't have been that she had 8 kids and a ton of laundry to do. Actually that could have been it. I think about that know because I'm writing this while I wait for Michaels 3am feed to end and I just brought the laundry upstairs. I found myself unable to sleep after his 12am feed so I showered. It felt so good to have some quiet alone time. I'd much rather be cuddling Zoey in bed but wow I needed a shower. I straightened up the living room and started getting clothes out of the dryer when I heard Zoey crying for me upstairs. I went straight up and was able to get her back to sleep but Jaron was still amazed that it was only 2am. He usually stays up till about now doing art and drawing but it seems that tonight we switched rolls.

First thing this morning I called Michaels nurse and left her a voicemail letting her know that he'd pulled out his tube and I wasn't able to get it back in. The lady that brought the IV stand for Michaels food pump was able to bring me some new tubes with the wire and at first I was confident that I could get his tube back in without help. She left and I began to prepare him. Swaddled him tight and layed him straight. I couldn't do it. I tried a few times and just didn't feel comfortable with the placement because he was freaking out. He wasn't crying when I did it at the hospital so I freaked out just after he did. He didn't eat well last night and I knew he wasn't getting the amount he needed. His nurse called and even though she wasn't scheduled to show up until tomorrow she was more than happy to come today and help me. I was so relieved when she'd arrived. She walked me through everything and reassured me that this is not a one person job and that I should have someone to help me every time for the first few times. I also realized that I need to have him swaddled with his arms down when I'm not holding him. His hands go straight to his nose and it's making me crazy thinking about having to do it again. The nurse also did his wellness check and weighed him again. Yesterday he weighed 8lbs 9 1/2 ounces. Today he weighed 8lbs 6 1/2 ounces. In less than a 24hr period he lost 3 ounces. This feeding thing is hard and I hate pumping. It is amazing what you find yourself capable of once you know know that there is only the one option. It's not an option of what I want to do. It's only an option of what I am doing, and this is what I am doing.

First thing Zoey asked for this morning was baby Michael. She wanted to know where he was and she was thrilled that he was laying right next to us. She loves him so much and knows he's not there to play with. She enjoys holding him with help from mom and dad and loves showing him all of her toys even if his eyes are closed. She has been such a big help to me and I love her so much. I try every moment to show her I do. I can also tell you that I do not love Elmo - Or robots. She loves Sesame Street and Yo Gabba Gabba so much that if it's not on the tv then she'll ask for it until it is. Today I gave in because I was side tracked by Michaels tube but I'm already thinking of the things I can do with her today that have nothing to do with the tv. She misses her friends at daycare but I'm glad I can get down and play with her still.

I want to thank everyone again for their support. Whether just reading our story or dropping off dinners and donating everyone has been more than generous and my family is so grateful. We couldn't do this without all of you. I've cried many times this week over how much help we've gotten from family and friends and I hope everyone knows that I am making sure their good deeds are gratefully appreciated. This has definitely been a long road but everyone has given us a lot to look forward to. A life with our baby. Thank you all so much.

Wednesday, May 9, 2012

Sweet Adrenaline

What a rush these last few days have been. I don't think I've ever been so busy in my entire life. We were told a few days ago that Michael was doing so well that they were looking to discharge him. Home? Yes! But wait.. I wasn't expecting this to come for a while still. Was the house ready? Were we ready? We began learning all we needed to from the nurses.

I began giving him his medications (4 in the morning and 3 at night). We watched 3 movies the hospital provides (Car Seat Safety, Crying Happens and CPR for Infants). We learned how to clean his incisions and bathe him. Then we had to learn how to remove his feeding tube AND replace it. So yesterday I got the opportunity to remove his feeding tube and then had to put it back in. I did it! There was screaming in my head the whole time but that didn't stop me. I never thought I'd have to shove something up my kids nose and hope that it went down correctly. There was only minimal crying from Michael and I apologized to him over and over again for having to do something so horrible to him. The nurse then taught us how to check the PH balance to make sure the tube was in his belly and not in his lungs.

I finally got to do all of those things I've been wanting to do but put off. Getting his new clean sheets and blankets in the cradle and put it next to the bed. Getting diapers and wipes in the rooms I'll need them in. Getting his bottles washed and ready. And went Crazy on sanitizing everything.

The day had come. We were bringing our sweet angel home. We spent yesterday morning going back and forth from the pharmacy making sure they had the correct medications for us and making sure they were going to start having them in stock (because they didn't yesterday). We got to the hospital and started going over information with the nurses and financial office and poor Zo was exhausted. I'm sure when she heard we were bringing Michael home she had no idea what it entailed. We got him set in his car seat and started to head out of the building. I don't think I've ever been more aware of the people I was coming in contact with. I wanted to hide him from everyone on our way out - just so they didn't breathe in his direction. I found myself wishing for a plastic bubble to put him in. Why didn't the Dr's give us a bubble? I realized after I got home that I was happy without the bubble but that wasn't going to stop me from cleaning everything.

This morning I realized that I only get two hours of sleep between each feeding. With his feeding tube it takes an hour for the whole  2 1/2 ounces to go through. Jaron went to work and so did I. This is definitely a full time job. I finally thought I was getting the hang of things until this evening. Michael pulled out his feeding tube. Yikes. Adrenaline ran through me so fast I got a stomach ache. I thought for a minute that the last thing I gave him through the tube was his Amioderone (his heart medication that is keeping his rhythm out of the flutter - A very sensitive medication) If that was the last thing I gave him and didn't flush his tube that means the medication is still in the tube - Not in him. It took me a few moments to realize that I had flushed his tube with the milk he didn't finish through his bottle. Instant stomach ache. I will Never give him his heart medication last again. He can't miss a dose of this medication or we risk him going back into flutter which means straight back to the hospital for who knows what.

The first day home was in some ways a success. I feel very accomplished but still very nervous. Tomorrow I'll be a busy bee again and already have a ton of calls to make for getting his feeding tube placed back in. Of course they didn't send us home with the wire we need to replace it so wish us luck. Bottles and Nursing only tonight. Yikes!