Micah is 2!

We had a little birthday party for Micah yesterday. A few of his friend came over for a Mickey Mouse Club House themed party. He was having a little bit of an off day but he had fun at his party. He was so happy to have friends over to play and he loved getting lots of special treats, including ice cream cake! Today is his actual birthday. We spent the morning at Maelyn's doctors appointment at the hospital, but the boys think the hospital is pretty fun and they get extra snacks there so it was fine with him. This evening we will have a little family party for him with dino nuggets, more ice cream and a couple presents. I am so glad that Maelyn's surgery did not interfere with Micah's birthday. He deserves to feel special and have a great birthday, he has come a long way this year. He had a liver biopsy, started his cornstarch and then broke his leg, not to mention became a middle child! Let's pray he has a better year! And praise God for the adorable, outspoken, loving and caring little boy he his becoming!

Maelyn's MRI

The day before the MRI. Proverbs 31

Maelyn's MRI was a few days ago. She did very well! I was nervous. It her first time under anesthesia and the risks are higher with heart conditions. But the children's hospital has specific pediatric cardiac anesthesiologists, so I knew she was in the best hands possible. She also needed an IV and a breathing tube. She did get a couple of pokes for the IV placement, but she was asleep during it so she probably doesn't notice the bruises on both of her hands. I was worried that the breathing tube would make nursing more difficult for her but she did fine. The only adverse affects she had was a raspy voice for one day and cough for a couple days. Over all she did really good. Tim took her because she needed to fast before hand. Luckily it is only a 4 hour fast for breast fed babies, and daddy was able to take her. She didn't seem to mind the fast at all. Tim said she was strangely happy at the hospital waiting for the procedure. When she woke up she was groggy and upset, but all as to be expected. We were only in recovery for about 45 minutes! Once she was unhooked from everything and dressed in her own clothes and blanket she was much happier. We got to talk to her doctor for a minute on our way out. He was glad to see that she did well and was already leaving. Her oxygen has been pretty good. It has more extreme highs and lows, but over all it is good. Her doctor said that is totally normal and her oxygen is probably still higher because her heart may be growing extra arterial branches to over compensate. They will be able to see that on the MRI and will remove them during surgery if needed. We have a follow up appointment next week and will talk with her nurse and doctor more about the MRI and surgery.

Ready to go in to the MRI

Now that the MRI is done, she is all ready for surgery. We are less than 3 weeks from the surgery. I'm trying not to focus on it or think about it too much. Since I am such a planner and visualizer, it is hard not to think about or plan for the hospital stay. I am feeling kind of prepared for surgery. I'm ready to be out of this day to day with her and to just get it over with. Since we found out about her heart condition I've been preparing for the worst with her, and she keeps ending up doing the best! So I'm praying she keeps it up and just aces surgery. But thinking about staying at the hospital for a week again is hard. Her recovery will be hard but I know it will be easier on me at home. The last couple weeks I've been focusing on little projects around the house and just spending time with my kids. I'm trying to soak in every second with her. It is hard, with other things on my plate and other needy little ones but the boys are pretty good about me tending to her first. The boys get more independent everyday. Sometimes I can't believe how fast they grow!

Day after the MRI, watching TV with her brothers!

The New Normal

As Micah's birthday approaches I have so many emotions. First, of course, I can't believe he is going to be 2! Micah was a hard baby and I feel like I wished away his babyhood, but at the same time we are so much closer because of how hard he was. I spent so much more time trying to soothe him and was up every night with him for 9 months. And even now he is still very emotional, and I feel like I am the same way, so I relate to him emotionally. It took him so long to outgrow the baby phase, so seeing him turn 2 is exciting but hard and happy and sad.

But also, Micah's birthday will be one year since our lives changed forever, turned upside down, and our "new normal" really started. The week of Micah's first birthday was when we found out he was sick and the same week we found out that I was pregnant with Maelyn. It was the week I started to feel morning sickness and also started all of the diagnostic testing for Micah. It was the begining of the longest year of my life. A year that I hope to never experience again. As I was first thinking about this, I had this feeling of, if I can just get through this year everything will be smooth sailing from here on out. But I now realize that this one year anniversary is just that, the end of the first year of our new normal. Yes, it was hopefully the hardest year, our kids getting several diagnosis', going through testing, learning all of the new information that goes along with those diagnosis' and on top of loosing our housing, buying a house, giving birth, and just everything else we went through this year. But the reality is that, for the rest of our lives we will have medical issues to deal with, they are not going away. We may have gotten through the first year but we still have open heart surgeries, heart catheter surgeries, and countless echos, blood draws, abdominal ultrasounds, and hospital visits ahead of us. That is our reality, our new normal. So here's to accepting our families new life, hopefully it gets easier.

Dates on my calendar

Maelyn had her weekly cardiology appointment on Monday. Micah needed more blood work done so we went early and got the blood drawn and ate breakfast at the hospital. Thankfully, Tim was able to come and help. I just got the results back and his triglycerides are getting better! That means the corn starch is working. Hopefully we wont have to increase it, but as of right now there is no end in sight for the 2 am corn starch. 

Maelyn's appointment went well. She is still gaining weight really well! More than an ounce a day. She is ready for surgery, but if her oxygen level can stay up, everyone wants her to be 4 months old for it. Her nurse gave her a developmental assessment and she passed with flying colors. She seems like a perfectly normal 3 month old baby. Praise God! We are hoping that her eating, gaining weight and developing so incredibly well is an indicator that she will do well recovering from surgery. 

Surgery is scheduled for October 1. We will need to check into the hospital the day before. I think we are expecting to be in the hospital a full week. Maybe more maybe less. My parents are planning on coming to stay with the boys.  If you are interested in what the surgery will be doing, look up information on the Glenn Procedure, it is also called the hemi-fontan. In a quick google search for you this is the best I could find. http://www.childrensheartclinic.org/procedureillustrations/bdg.pdf Her heart anatomy is different than the picture but the rearranging of arteries will essentially be the same. 

I also scheduled Maeyn's chest MRI. I really like the Children's Hospital of Colorado, with the exception of the scheduling process. But it is scheduled. The MRI will be one week from today, on the 8th. Maelyn will be put under anesthesia and will have to have a breathing tube placed for the procedure. It is supposed to be an outpatient procedure but they say to have an over night bag ready just in case. You never know how she will come out of anesthesia or how she will recover from the breathing tube. I think the plan is for Tim to take her there (since she will have to be fasting and me holding her would just be torture for the both of us) and then I'll come later with the boys and we will switch places so that I can be there to feed her when she is able to eat again. Tim will take the boys home, while I am at the hospital with Maelyn. 

I'm having mixed emotions about these dates on my calendar. I thought I was feeling ready for all of this, but it being written there, staring at me, is just weird. And it just hit me how soon it will be. I am trying to remind myself that by Christmas she should be fine and that is what we want. We just have to get there. Once surgery is over and she is recovered we wont be constantly checking her oxygen or worrying about when we will be having surgery. She should be fine until her next surgery when she is 2 years old. I'm trying to not let myself think about all of the possible complications and set backs that she could encounter, but sometimes it's hard. And I'm trying to find a balance between what to expect to happen and what to consider might happen. I can ask all the questions but there are really no answers because Maelyn is her own unique self. There is no way to know for sure what the outcome of her surgery will be. We are trying to trust that God will continue to do good things for her and keep her healthy and safe.  

Please continue to pray for her! Pray for her oxygen and health to be great for these next few weeks. Pray for her MRI, that she would handle the anesthesia and breathing tube well and would recover quickly. Pray for her feeding ability. Pray for her surgical team in advance. Pray that God would be her healer and sustainer. Pray that God would be glorified through all of this. 

All of my recent smiley pictures of her are blurry because she's so active!