Wednesday, June 27, 2012

Quiet Time

My quiet time. My 3am time. 4am now? WOW! My time has been getting away from me. I just finished the last post and was so happy to see it when I logged in. I tried earlier today to get the blog in and Zoey wanted to help. In her helping I was positive that she had deleted what I had and had also started about 4 other entries. She's a computer wizard. Thankfully she did not delete my almost done post but had backed out of it and it was sitting there, waiting for me to finish it at 3 in the morning.

Doctors appointments, nurse and therapy visits have been taking up the majority of my down time. Alone time isn't something I know much about anymore. These quiet times are cherished and taken advantage of when I get them. Usually I use them for sleep but I feel selfish not sharing the progress we've been making. I saw something online the other day that made me realize I haven't been able to share much emotion other than relief and excitement over actual progress. I'd like to share this because these are all things I've felt and haven't been able to voice through tears.

After Michael's doctor visit yesterday I hit heavy traffic and the car began to act up. I made it to a mechanic to take a look at it and as I waited there were two kids waiting with their dad. The little girl had no means of boundaries and as I sat trying to ready Michael's bottle she came up close and began asking never ending questions. I definitely did not mind answering her questions as they came one after the other. Kids grow up not being able to witness a lot of this and she may never see it again and may not even remember this one short time. She came up and touched the tape on his face and the tube underneath (me cringing on the inside because her hands were dirty and I didn't want Michael to get sick from this random visit to the mechanic) she asked what it was for. It didn't make much sense for me to tell her that it's for his milk to go in because he can't drink it very well as I was trying to get him to take his bottle. I explained that he has a lot of medicine that goes into the tube to make his heart work right. She found the end of the tube and the heart monitor to follow and asked what they were for. I explained his heart monitor to her and how it would let me know if his heart was getting sick again. The questions continued as she seemed mesmerized by this little baby. She pet his head and loved his soft hair. she took the bottle from my had and assured me that she could hold it for me. She also had me stand up and walk to the window with her to get excited when their car had finished. As they left I wondered at first why the dad hadn't asked his daughter not to touch the baby. I was seeing him as a little sick baby with a feeding tube who had thrown a tantrum out of hunger through traffic. I was so concerned with him throwing a huge fit because who knows if that could trigger his arrhythmia, I don't want to find out. I hurried and got to the mechanic and sat down and got the bottle situated when this little girl saw a healthy baby boy who was soft and quiet and full of life like any other baby. She saw passed his feeding tube, monitor, and wires and just saw a beautiful baby. I hope everyone can be like this little girl. Unshy of asking questions and able to see a baby. Just a normal baby.

Sibling Rivalry

Sibling Rivalry at two weeks. What fun! I've heard stories about bringing the new baby home and all they endure. I just thought this little guy had been through enough already. Zoey loves, loves, LOVES her new baby brother. She gets to hold him and kiss him and "play" with him. She's teaching him about the little piggies that are his toes. She loves to make him happy with kisses and hugs but still needs a little help to remember not to hug too hard.

I'm not sure if she was feeling upset or just curious but the other morning she decided to hit him in the face. I had turned just before it happened and didn't harness my reaction. I'm over protective of him not just because he's a baby but because he's a cardiac baby. Of course he cried and Zoey cried as well. She is so wonderful at saying sorry and giving hugs. She wanted to hold him after and watch a movie with him and she hasn't done anything too rough since but wow! My heart jumped to my throat but not so much that I wasn't able to explain to her why we can't hit. Not just the baby but anyone.

She went with me to take Michael to his follow up appointment yesterday and it was wonderful. I got several compliments on Zoey and my parenting. She had been saying please and thank you since we'd walked through the door. Michael's appointment went wonderful. He's still gaining a good amount of weight (over 11lbs now) and his arrhythmia has been under control. Last week I was up all night with Michael as his monitor had been picking up strange rhythms. I sent in a total of 6 recordings so I was pretty sure I was going to be sent back. I had a lump in my throat as I started to dress myself just past midnight. I had just sent the sixth recording and was positive I was going to get a call back. Jaron came down and reassured me that I needed to wait for a call back before getting worked up and I agreed. Michael wasn't showing any weird outward signs of distress and his heart rate and breathing were good so we decided to go to bed. My phone on my pillow next to my head so I wouldn't miss "the call". The call never came and his EP specialist reassured me at this apt that it was just Michael's rhythm with his extra beats that were causing the monitor to go off. Nothing to be worried about. I can say that now. I wouldn't have said that when I was getting dressed that night, but it's not that night anymore, it's 3:30 in the morning and I'm waiting for Michael to finish his bottle so I can get up with him again at 6. I am so happy that I'm waiting for his bottle to be empty and not waiting for his feed to end. We are so blessed to have this little guy at home. Showing us that life is precious and to treasure each moment. Even the 3am moments.

Tuesday, June 19, 2012

Quality Time

We've beat our record! We've been home for almost two weeks with our baby boy. Going on day 12 we are finally getting quality time with Michael. Watching and learning and hopefully not making many mistakes. He continues to gain weight at a really good level which is above the percentage they were hoping for. This boy continues to amaze me each and every day.

It is so nice being home everyday with him and Zoey. They make the days interesting and make them go by pretty fast as well. I live for Michaels feeding schedule to keep him gaining weight and to keep things fairly normal for him. Today he drank almost two full bottles by himself which is amazing! I joke with his therapists that come to our house and tell them that feeding him is like a sport (Extreme Pacing). You have to pace the bottle carefully and watch his face the whole time to see when he starts to swallow so that you can lower it just slightly. He also has an extreme gag reflex so if you put the bottle or paci in his mouth without him taking it in himself he usually gags pretty good. It's scary because I don't want him to throw up his tube again. I know I need to change it out Friday. Friday he'll have had the same tube in for two weeks which is the limit and it will need to move to the other side.

He is getting to meet all his cousins and hang out with the family now. We get a lot of people asking us about his feeding tube and kids pointing at him asking why his nose is gross. It's kind of funny explaining it to the kids but I think I've narrowed it down to just saying that it's for his milk because he can't drink his bottle yet because he's sick still. Usually that stops the questions from getting out of control.

Zoey is growing and learning so much. She loves SpiderMan and painting hers and daddy's nails. She wants to be Superman and a Princess in the same day. She loves coloring and last night started drawing on some paper. She told us she drew a monster face. She then continued to draw the same thing over and over again. She was actually drawing faces with two eyes and a squiggly mouth on each. It's so exciting watching both of my kids grow in so many ways day after day.

Being a mother of two is new and it keeps me on my toes. I can't explain the love I have for these two amazing kids as it outweighs anything I've ever understood. Sleeping and eating wait until they both have everything they need. Sitting is not always an option but I squeeze in a moment here and there. Zoey loves her brother so much and he grins at her enough that I know he is loving her to.

I will try to keep the blog up to date weekly. Thank you so much for those that continue to follow our story and for the love and support you continue to bless us with. We are so thankful for everyone that has prayed for our baby and our family as well. The prayers are being heard and answered every day. Every day Michael lives is a miracle in my life and I will never stop being amazed by the miracles the Lord has blessed me with through this little baby.

Monday, June 11, 2012

Ready or Not

Let's try this again. Going on day 4 at home. It's taking me a little bit longer to get into the swing of things. I am on an extreme schedule between Michaels feedings and his meds. I'm so excited that this round of medications is giving him a break to be a normal baby. He's so happy and he's eating a lot better by bottle now. I'm not having to tube feed him as much each time.

He was feeling much better and was so interactive at the hospital this time. They had an IV on his hand and there was a piece sticking out that he liked to suck on. I've been noticing him trying to find his thumb at home now and it's just not the same. *sad face*

Friday morning came around and they were getting ready to send us home again. Michael made the nurse and me proud by finishing his whole bottle at 6am. Then he decided he needed to poop. He was trying so hard that he threw up all his milk AND his tube. Quickest reaction I ever had. I hooked the little piece by his nose and pulled the whole thing through. Just thinking about it makes me want to shake. It was so gross!
This is how much he likes that feeding tube.

All of his nurses decided He misses them at home and that's why he needed to keep coming back. I had to admit that I missed them to. They make everything look so easy. I hope I can start to make things look as easy as they do.

I remember when my grandpa was in the hospital. A frail 80 year old man barely walking. He always had enough energy to tease the nurses. Michael definitely follows close to him. I'm sure my grandpa taught him all he knows.

The volunteers at Children's brought some toys in for the kids to play with. Michael got a pretty rad one for his crib. He would barely take his eyes off it. Lights, Sounds, Movement. He was in heaven! It was so much fun watching him get so excited when I'd start it up.

I got some fun pictures of him during his EKG. Dr Octavius doesn't have anything on Michael!

The rest of the family is finally getting the opportunity to meet Michael. And he gets to meet all of his cousins. I am thrilled that he is so close in age to his cousins like Zoey. It is so much fun watching Zoey run around with her cousins. Her aunt and grandma had a fairy tea party this weekend and it was so much fun! I picked out a cute outfit for her to wear over but her fashion won over mine. She went in MY tie dye shirt. It was awesome. And then after I called her awesome she said "No, I'm Superman!" Haha I love this girl!

Michael had a pretty chill time over at grandmas and his heart monitor only went off once while we were there. I had a follow up apt with his EP team at Children's today and the doctor told me he was the one reviewing the strips that had been sent and confirmed that the monitor was catching regular 'Michael' rhythm. They said everything looks and sounds great and he's finally getting the opportunity to relax. At home there is minimal poking and prodding and even when there is it usually is coming from Zoe. I need to give him a bath today since he's starting to smell like Zoey spit from all her kisses. She loves her baby brother so much.

 ~ And he's pretty fond of her to ~

Got rhythm

It's been just over a week since our last post. Michael has been doing really good the last couple days. We were discharged on Tuesday afternoon. We left around 1:00pm and got home around 2:00pm. The ride home was ok. He started fussing so Bryt climbed in back with him. This time we got sent home with a Heart monitor and the feeding tube. The Heart monitor is a little box as big as a cassette tape, it automatically detects when he is having arrhythmia and if he is it records it. It can store up to four recordings, then we have to call from a land line and send them to the doc.  It kind of stinks because it doesn't actually show you what it's recording, all it shows you is whether it has recordings or not. So if he is having arrhythmia, which he often does, we can't tell if it's his 'normal' rhythm or arrhythmia we should be concerned with.

That night we were at home eating dinner with some family. Michael started throwing a really big fit, something I haven't seen him do very often, he is usually a pretty happy guy. He was screaming and crying and we couldn't comfort him. We finally got him calmed down and resting. It wasn't until about 10:00pm we noticed that his heart monitor had some recordings on it. We both felt ok with it and neither of us really freaked out.  When it is sending, it sounds like a fax machine, you can kind of hear the rhythm, but its a really high pitched annoying fax machine sound. Each recording is about two minutes long, and he had three recordings. So we had to listen to this really annoying sound for six minutes. We tried calling from our cell phones but the recording wouldn't go through. It had to be sent from a land line, which we have never had. Bryt felt like she really needed to send it so she drove over to her parents house to use their phone. The recording went through and everything seemed ok. Bryt got home and we started getting the midnight feed ready.
Around 12:30am we got a call from the cardiologist. Michael was having some pretty bad arrhythmia and needed to come back in. We are guessing it was when he was throwing that big fit, we don't know if thats what started the arrhythmia, or if he felt it coming on and didnt like it.  Bryt packed up his stuff and brought him back in. We were both still doing pretty good, this was just a minor set back.

Good Rhythm

The next day was Wednesday, I stayed home from work with Zo and we went to the hospital to see Michael. he was starting to look pale again and slept pretty much the whole day. His rhythm was all over the place and did not look very good. The docs said they were going to toggle his meds around and see if that helped. They told us that they wanted to monitor him for a week or two and make sure nothing else was going to happen. He pretty much slept the entire day and nothing really happened. On Thursday, he slept for most the day and nothing really happened. On friday the docs decided he wasn't really doing much so they were going to send us home. They had changed his meds around and taken us off the digoxin(one of the arrhythmia meds). They wanted to make sure we could handle it if anything sever started to happen so they ordered us an Automated external defibrillator. No big deal, if he starts having arrhythmia we just strap these pads to him and shock the crap out of him... um... No thank you! Neither of us want to shock him, if we need to go home with something like that, why are we going home at all?

Friday afternoon came, he was doing pretty good and we were sent home. Right after we got home someone brought us the defibrillator. We got trained on how to use it, but neither of us are ever planning on touching it. Michael did really good for rest of the day, and then right when we were climbing into bed his heart monitor started going off. It was about 10:00pm again. We had ordered a Land line that morning, but it was not hooked up yet so I drove into work to send the recording. I sent it in and went home. We stayed up waiting to hear from our cardiologist. 20 minutes later it started going off again, so back to work i went. I sent it in and went back home. This was a pretty rough night, I had to keep leaving the house, Michael was not doing too good with the arrhythmia, Zoey was freaking out because she wanted attention. Bryt and I were both exhausted. It was one of those moments where I just wanted to give up and say eff it. I said a prayer which helped calm everything down and then we all went to bed.

Saturday morning came and there were two more recordings on his monitor. I went back to work to send it in. I was starting to lose my patience so I called comcast and had a 'nice' chat with them. They scheduled our land line to be hooked up the next morning at 7:30am. We just had to make it one more day without a phone.

We decided we go spend the day with Bryttney's parents. They have a phone and AC, we could go relax over there and be prepared to send in a recording. We had a pretty good day there and only had to send in one or two recordings. Around 2:00pm Michael had a nice big BM. I know it's weird to get excited about your kid pooping, but we have been giving him suppositories every other day to make him poop. This time he did it all on his own, and it wasn't as hard as it had been the last couple weeks. We stayed at grandpas house until about 11:00pm. Still no recordings at 11 so we decided to go home. Sunday came and still no recordings, we took him to church and he did great.

It's Monday morning now and he still hasn't had any recordings. He hasn't had any arrhythmia since his big poo on Saturday. We are thinking it was the digoxin that was causing some of the issues, it says right on it that it can cause constipation. We have also been warned about anti-arrhythmic medications causing arrhythmia. We have follow up with rhythm specialist today, so maybe she'll have some more insight. Overall he is doing really good, he weighs about 10.5 lbs now

Sunday, June 3, 2012

Staying Strong

Michael is doing great. He has been weening off of his oxygen all week and decided he was done with it this morning.  He took it off early this morning and was doing great so the nurses just left it off. It's so awesome to see him again! He looks so much better without all those plastic tubes everywhere. He still has his feeding tube in, but he is doing great with his bottles.  He got switched back to oral Lasix and started taking bottles again this morning.  He seems to be really enjoying the new anatomy of his heart, he was able to drink his entire bottle this morning. We have only had to use the tube for a couple ml at each feed. He is doing really good with everything so far, he is such a strong little man.
I made this picture for him last night. It is Lotsa Heart, he is the strongest of all the carebear cousins. I thought it was very fitting for him. He has powered through so much already, and he always manages to make us smile. He is such a cute little stinker, I can't wait to play with him.
I feel so blessed to have such an amazing team of doctors and nurses so close to us.  It is so awesome to see him go from bad to good in such a short amount of time. I know the lord had a hand in all of this, and it has been incredible to see all of our blessings unfold. The people that surround us have been so wonderful and supportive.  Zoey is so lucky to have such great aunts and uncles. She has been a little soldier through all of this. She has had a lot of time away from home, and a lot of time away from mom and dad.  We both feel guilty dropping her off  every time, but we know she is in good hands and she loves playing with her cousins. We are so blessed to have them so close. Thank you again to all of our family helping out with her. She loves coming to the hospital but it is still pretty boring for an adventurous two year old. Soon she'll be home with her bro! Soon!

Friday, June 1, 2012

Just Peachy

Michael is improving everyday. They are still weening him off of his air flow to make sure that his respiration is good. He also got a blood transfusion yesterday because of all the tests they've been running on his. He hasn't been able to replenish what they've taken. He got another echo on his heart today and it showed that he is showing great improvement since before the procedure. It feels like a dream having him look so well. He has the peachy skin that every baby should have. His color is great and he's playing and smiling again and cooing more than he was before.

They are moving him back up to the 9th floor tomorrow morning which is a sure sign of how good he is doing. From there they will continue monitoring him until they decide he's well enough to come home. It makes me nervous and excited at the same time.

They haven't begun to feed him by mouth yet. They started feeding him through his NG tube again yesterday and should be able to try the bottles tomorrow. He's still a little achy from his procedure and gets a little fussy around the time the tylenol wears off. The marks that were left from his procedure are very small and healing quickly but I won't take pictures because they're too close to 'little Michael'.

Grandma got to visit him this morning and gave me and Zoey a ride up to the hospital. He was wide awake and ready to play. Zoey is so wonderful around Michael and ready to load him up with kisses. She didn't fall asleep until just before Jaron got there and then him and Michael took a nap to. I'm so excited for everyone to be able to sleep at home all together under the same roof.

We'll head back into the hospital tomorrow morning and hang out with the baby. I can't wait to see his smiling face. He better be prepared for some epic cuddles. His mommy loves him so much!

A lullaby that fits so wonderfully for Michael. I cry every time I hear it. "Godspeed" by the Dixie Chicks. LOVE IT! Give it a listen ~ Sweet Dreams Little Man ~