The Straight and Narrow

Michael is staying strong and holding on tight to his "balance beam". We have had a week of check ups and appointments that have been great. We met with Michaels PT and OT on Tuesday. They don't have any concerns with him right now and just want to continue monitoring him on a regular basis. His OT left him some new toys to play with that should help with his teething. This boy chews on everything! He is going to be the kid that puts everything in his mouth. I'll need to keep a closer eye on him than I did with Zoey. She never got in to anything. Michael likes the new toys but Zoey Loves the new toys. I just found three of them in her room. She'll be heart broken when it's time to give them back. We are also teaching him to play peak-a-boo. His OT was having a blast!

  Trying to get these two kiddos out of the house while they are both clean and before Michael soaks his outfit in spit up is a mission. Today we were able to complete this mission and arrived at Childrens in Aurora. We had a check up with Michaels Cardiologist. Walking through those doors brings back so many emotions. While sitting in the waiting room I watched as a nurse came in to update a mother waiting on her daughter to get out of surgery. The nurse said everything went well and that she would be able to see her daughter soon. It's so hard to watch these parents sit in the exact same place we sat just three short months ago. I came out of a very happy check up and still walked down the hall crying.

Michael is doing so well that they are going to wait for another three months to have his next follow up. At that time they will take him off his aspirin and his lasix. His Cardiologist also mentioned that whether Michael is able to make it another 6 months or another 6 years before his next surgery is still a mystery. If he is able to make it to 6 years without needing the surgery then they will probably decide to go through with it at that time. Michaels risks will be much lower than they are now. The gradient behind his Mitral valve is looking better than last month but we still need to keep a close eye on the right side of his heart and his lungs to make sure the pressure doesn't begin to build up again. There is still some leakage through the valve which means that another Valvular Plasty (ballooning the valve open) is pretty much out of the question. Too much leakage could make him really sick. I was advised that Michael is a candidate for a monthly RSV inoculation which is called Synagis. I'll be taking him into his pediatrician once a month for this to keep his risk of catching this virus low. They also recommended getting his flu shot once he turns 6 months which will be on Oct 3rd. After the appointment his Cardiologist asked if he could go show him off. Michael was so happy to be seen that he was grinning from ear to ear. I was able to see his arrhythmia specialists and even the woman we met that gave us our walk through of Childrens while I was still pregnant. It was great watching Michael spread so much cheer.

I have such an amazing family. These two kids have been threw a lot. Zoey still doesn't understand a lot of it but I have to say she is just as strong as Michael. God has blessed me with two little soldiers.

Count Your Blessings

Change

There has been nothing but change lately. It's hard for me sometimes because some of the changes aren't the things that I would expect. If it's unexpected then how do you prepare? I feel unprepared most days. Unprepared for the day and what it holds. The day may hold something wonderful, waiting to announce itself. It may also hold something that brings out a lot of thought and emotion. No matter what the day may hold I hold something better. I hold my head up high. Sometimes I hold my head too high and I am stuck in the clouds all day. No matter what the change I know that I am being watched over and blessed. Thoroughly Blessed. I thank God every day for everything I have. If you could be in my head while I say my prayers then you might actually hear me say thank you for the silverware. I thank him for everything that may someday not be there. Everything most people (including myself) may take for granted.

Most all of our blessings lately have been coming from the people surrounding us. I feel that God has worked through so many people, bringing them to us when we need them most. I don't think I've ever felt so needy in my entire life. Not that it's a bad thing. It's alright to have needs. With so many on my list what do I cross off first. I feel like I need to make a new list of needs today. My family and my friends. Those are my needs. With them by my side I can accomplish absolutely anything. I thank God daily for my family and friends but I want them to know personally just how thankful I am for them. It's hard to show sometimes because most people know I can cry at the drop of a hat, so instead I hold it in. I thank them in my head and then again in my prayers. They have given us so much hope and so much faith.



Today I am thankful that I woke up with my children by my side and that I didn't need to plan, like before, for my daily trip up to Children's Hospital. I got to see them together watching a movie on the couch. I want them to be as close as I am to my brothers and sisters. I am so excited to watch them grow and hope that one day they will think of themselves as best friends the same way I think of my brothers and sisters being my best friends. I love you guys - words can't express how much.

The Wubbanub

The Wubbanub that saved our lives! Michael had a complete melt down tonight. And while Michael was doing that, Zoey decided to have a complete melt down. For all of you that know, Zoey has been glued to her paci since two days ago. Everyone talks about the "Easy Button", well, that was mine. It was nice seeing her so easily satisfied. If she ever reads this blog then she will then find out that this is what I'm doing when she asks for her paci;

Zoey "Where is my paci"

Me "I don't know. Where did you put it?"

Zoey "I don't know. It's hiding from me"

Me "Oh man! Silly Paci"

* End of Conversation *

How nice, right? Until that moment. That moment that was tonight. Poor Jaron was alone with them for almost an hour. By the time I arrived home he handed me the baby and escaped to his office. For this reason I now know why the Ostrich buries its head, it's to muffle the sound around him. 

There has been a lot going on lately. We've been trying to spend more time with Zoey, doing the things that she enjoys. We were invited up to the Runway Grill to watch the planes practice for the airshow the next day. It was great. Zoey loved it. Michael didn't appreciate the fly by's the way we did. 

We were also invited to see some horses. I was so excited to see Zoey loving on these horses. Michael was thrilled! Zoey, not so much.










I've been taking some random pictures lately so I thought this would be a good time to post them. I don't take pictures to just hide them in the dark. At least I hope that's not what they're doing.

Michaels Morning Cocktail

Head - Shoulders - Knees and - Hey! Where'd your toes go??

Eating Grandma for dinner. I mean, Eating at Grandmas FOR dinner. 

I hope you enjoyed! Thank you again so much for all those following our story. We miss our friends from the daycare so much and can't wait to have Zoey back with her friends. We are still being shown so much kindness from friends and family. You will all be in our hearts forever.

On The Move

We had Michaels OT (Occupational Therapist) come over today. Everything is going great! It's nice having these women come over that can show me what things are looking like. We think Michael is teething which is crazy. I didn't say anything to her but she was playing with him and saw the white buds under his gums. Dang. During her last visit she brought her reflux seat with her. Michael wasn't too sure about it at first but now he's loving it.I got out one of the bigger toys to put in front of him and he is kicking non stop. He gets a pretty big smile going.


We also have him working on tummy time. She was thrilled to hear that he's rolled over and gave me a few new positions to put him in to work on physically. She's letting us keep the reflux seat a bit longer which Michaels thrilled about I'm sure. He's now 13lbs 2oz. His weight gain is great and he's getting stronger by the day. This little guy has a lot to live for.

Tomorrow we see his Physical Therapist. He gets a chance to show off his new moves.

No Strings Attached

August 3rd was the last day of Michael wearing his heart monitor! We're able to mail it back to Children's and continue with his regular follow ups. WOO HOO! So Happy! Michael is doing great. I took his monitor off the Saturday before for a bath and put on new clean stickers and that Monday he had spit up so much that his top right sticker began coming off. When I peeled it off I found weeping blisters underneath. I cleaned them and let them dry and scab and was so afraid to put the stickers back on. No way was I putting new stickers on open sores or scabs. I got a message the next day that the 3rd was his last day on his monitor and to send it back. YAY!

We've been showing him off to everybody and he's starting to show his playful personality. He loves laughing at Zoey and she loves making him. These two were definitely paired together for a reason. Yesterday he was sitting in his reflux seat that the therapist is having him use, Zoey went and grabbed the bumbo and sat in it right next to him. Her legs actually still fit in it. Skinny but Tall. She is so good at keeping him company that she reminds him constantly that he is sleeping too much. She does not like when he falls asleep during her favorite show so she wakes him up again to finish watching it. It's funny watching the two playing off of each other already. They're already great friends.

Taking him out is sometimes hard. He only lasts in the stroller for about 15min before he starts to get upset and walking him upright for too long affects his circulation and his hands and feet start turning purple. It's scary but the cardiologist has assured me that it's nothing to be concerned about.

Zoey's starting to grow up so much faster. She is such a big helper. She loves to kiss his hands and feet and use the same paci that Michael is using. I just stopped that the other day because Michael has been congested and I can't let it get worse. The pediatrician told me to just keep doing what I'm doing, which is the normal stuff for congested babies. I still feel like it's not enough so I'm washing things left and right.

She has also stopped sleeping. Not altogether but naps aren't happening anymore. That's a huge change for me. I miss her nap time/my alone time. She'll fall asleep at 7 some nights and wake up at midnight wide awake asking for food. She also stayed up until 11 the other night because at 10:30 she decided to have a tea party. We had fun and she slept great after she was done with her tea. I got the crack down on it though. I just got her room cleaned and her bed made and got her new sheets and a Minnie Mouse pillow case she is so proud of. She fell asleep at 9 last night and slept in her own bed half the night. Michael slept in his crib. It's so hard not having him in the room with me but I slept better which his cardiologist told me was most important. He told me that it's time to stop treating him like a cardiac baby and to start getting him (and us) back into a normal lifestyle. I didn't realize how hard it was going to be for me to stop treating him like a cardiac baby. Am I always going to be treating him different or will I get used to it and come to terms with it? He's growing wonderfully so his dietician said to stop counting cc's during his feeds and just let him take what he wants. He's now 4months - 12lbs 13ounces - 25inches long And - he rolled over for the first time! He's done it twice since!

This month on the 19th is our 6 year wedding anniversary.  I am so thankful to have Jaron in my life. He makes everything better. He has given me so much and I feel that he is my equal. I need him more than I can sometimes admit. I like to show my strengths but sometimes my weaknesses shine brighter. He's always been there for the hard moments to pick me up. He has given me the greatest kids and helps me remember that sometimes it's ok for me to still act like one as well. He brings meaning to my life every day. I love my sweets. Happy anniversary babe.

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.