Staying Busy

Michael is getting so close to holding his own bottle. It's pretty exciting watching him work on his coordination. He gets so angry when he drops his bottle and he whips around trying to find it. He's finishing his whole feeds now and sometimes more but he has become the spit up king. I bib is not necessary, I need a blanket to catch what he throws at me. Last night when we were giving him his meds some shot up at my face and got my eye. It scared me at first but then we couldn't stop laughing. Laughing really is life's best medicine.

Michaels therapists haven't come for a few weeks now, and the day after their last visit we ended up taking Michael into the emergency room. He had been spitting up more than normal and then that day his alarm went off. We had four recordings sent in that weekend and each time I sent one in my heart stopped. I have learned to wait about an hour to get a call back and if they haven't called back within that time then it's not serious. I hadn't received a call back so I called into the cardiac department and they decided to have him brought in for a check. A very thorough check. EKG's and X-Rays and fun stuff. My mom went with me to keep me company and thank heavens we didn't need to check into the hospital. They decided he could have a stomach bug that was setting off his alarm when he was spitting up. Well it's been three weeks and the spit up has continued. His therapists come on Wednesday and we have an apt with the cardiologist next week to see how Michael is doing and up his medication doses. We'll see on Wednesday how much he weighs and I'm praying for weight gain again. He'd been gaining so well with his feeding tube and I'm really scared that they are going to ask me to start using it again. I just don't feel like he's keeping enough down. What am I doing wrong?? This is a question I ask myself daily. And then I pause and bury that feeling and move on. Because I have to. No time to dwell.

I find myself keeping busy to stay sane. Every time I sit down I feel guilty that I'm not spending time with the kids or taking a nap when they are. If I sit the sweeping won't get done and if I nap the laundry won't get done. Is there really so much to do? Yes. Today I was doing the dishes when Michael's 2pm alarm went off but because he was napping I figured I could wait a few minutes until the dishes were done. I filled the syringe and set it down and of course I then forgot about it. He woke up at about 3:30 and it wasn't until then that I noticed the full syringe still on the counter. It's times like this I want to slap myself in the face. I feel stupid. I'm running in circles and still forgetting things. Thank goodness my forgetfulness hasn't affected him.

I've been trying to keep Zoey busy as well so that she doesn't spend the day in front of the television. If she did she would watch The Iron Giant more than the 3-4 times a day she is already. I get her outside to play while I weed the garden. I've become a Pinterest.com addict and have a lot of DIY (do it yourself) stuff on my list of things to do for the backyard as it's unfinished but I soon realized that if I wasn't getting up to weed the front yard then what made me think I could remake my whole backyard. The front yard is looking pretty good so far but I still have a ways to go. It's so much fun doing all of these things with Zoey and she loves being a big helper. She's still having her moments of pure exhaustion and jealousy but she is truly a wonderful sister and she loves her baby Michael so much. She gets so upset when she sees someone holding him like she thinks they are going to take him or something (So no offense if she does this to you). She is very protective and takes great care of him. That is until I walk into the room and she is standing over him jumping. YIKES!

We got to spend some time with her cousins this past week and they thought this was pretty funny

Happy Blog Day!

Today has been wonderful. Michael had his appointment with his Cardiologist and he was so excited to see us. We haven't seen him since right after Michael got released from Children's. He was so happy to see Michael doing so well.I needed today. To have the Cardiologist see Michael and know that he is going to be ok. It has been so refreshing having Michael home. Don't get me wrong though, it's still tough. His sleep schedule along with feeds and meds have got me doing loops. Well worth it, I'm now seeing the benefits. Michael got his feeding tube out today!!!


Not only did Michael do great this weekend on his feeds but he's taking all of his medications orally. That is a huge win. I'm going to take a second and let you in to his medication schedule. This is what I have on my mind all day long. Making sure I'm not missing or sleeping through my alarms on my phone. Again with the alarms. At Children's and at home.

6am - Propranolol
9am - Amiodarone, Furosemide (lasix), Asprin
2pm - Propranolol
9pm - Amiodarone, Furosemide (lasix)
10pm - Propranolol

Unfortunately not all of these are on his feeding schedule which I have going around the clock as follows;

12am - 3am - 6am - 9am - 12pm - 3pm - 6pm - 9pm

You know when you wake up early every day to your alarm that goes off at the same exact time and for some reason you start waking up just a little bit earlier? Bless our body clocks. My body clock alarms be 15-20 minutes before my alarms go off. Every time. Even now it's 9:38 and I'm thinking "Only 20 more minutes before bed again. 20 minutes".

His dietician worked out an easier way for his eating schedule although I can't get this one out of my head. It's already set in stone in my mind. She said that we can try feeding him whenever he shows interest and make sure he's hitting a daily goal. Unfortunately I'm not great at math in my head - yet. I'm going to have to do this. I'm going to have to learn and I'm ok with it. He's gaining above his goal weight daily and thanks to his therapists that come to the house once a week I know weekly that he's doing great. They come and play with him and take measurements and weights. These women are outstanding and have shown me so much. They are helping me and showing me how to raise my son. I am so blessed to have these women coming to my home. It's a little unnerving having not only one person you don't know coming into your home. It's a whole other having three of them. Different times of the day, any day of the week. Not once have I felt uncomfortable inviting them in. These women were not only chosen to care for Michael but they were chosen to care for me as well. Thank you to everyone in the medical field for helping people in ways you'll never know. I am so thankful that these women go out of their way every week for Michael and me. They help me know and reassure me that I am doing a good job. Because mothers of any child can never hear enough that they are doing a good job. Every once in a while it needs to be said - and heard.

So Blessed

Today Michael received his name and blessing in the church. When we had been at the hospital there were several times I was uncertain that we'd actually make it to this point. I am thrilled that so many people were able to make it and want to thank them again so much for coming. Today was so important to us and it couldn't have gone better. I was able to stand up and bear my testimony on the blessings we've received and the strength our faith in Christ has brought us. We have so much gratitude for the people that have given so much service and prayers for our family. We continue to see goodness in everyone around us. Michael has brought a new light into our lives and I know that light will shine forever.

We are extremely happy that Michael is so healthy and doing well. Every doctors visit goes well and his therapists say the only thing he's behind in is eating. Within the last few days Michael has pulled his feeding tube out multiple times. This morning at 3am I woke up to feed him and saw that he'd pulled it out again in his sleep so I decided to let him go the day without it. Yesterday he didn't do as well with his bottle feeds so I was a little concerned but starting with the 3am and going up til now he has met his goals. It takes a little longer for him to eat and I have to break up the times a little but he met his daily goal.

This week will be somewhat busy again with doctors appointments but I look forward to telling them his progress. He is one of the happiest babies I've seen which I've heard is somewhat abnormal for Cardiac kids. We had a great time with our family today during Sacrament Meeting and because it's the first Sunday of the month we had Fast and Testimony meeting. I fasted to show my gratitude to my Heavenly Father and bore my testimony of the blessings I've been given according to my faith. So many family members followed and bore their testimonies as well. I love hearing Michael's story through others and how he's touched their lives. I'm overwhelmed with the blessings he's brought to my family and with how close we've all become. Family and friends and people we haven't even met have gathered together to hear his story and follow it continually. His story goes on...