Surgery....postponed

After Maddox's cath lab procedure on the 22nd, Dr. G let us know that there was a possibility that surgery would be postponed due to the high pressures in Maddox's right ventricle and his pulmonary arteries. In short, he has high blood pressure in his heart and lungs. We later spoke with our cardiologist, Dr. P, who said the same things with a few more details. She wanted to talk to Dr. AK, Maddox's surgeon, and see what he thought. They decided that it would be best to wait and see if we can get his pressures down a little bit. We go back in August and will re-evaluate then. So much for my carefully laid out plans for Summer.

It honestly felt like a burden had been lifted when we got the official word. I didn't realize how stressed I really was until it was gone. Our summer is now quickly filling up with lots of really fun things! Although, I had looked forward to my dad being here to take care of things while we were in the hospital.... specifically my garden. There are a lot of really great things about waiting that I just kind of pushed aside while planning for surgery, so it's going to be a fun summer.

Bailee finished Kindergarten! I can't believe I officially have a first grader! She is so nervous about first grade, but I know she'll do great. Here's a proud Mamma moment.... Bailee received the Academic Achievement award among the girls in her class. She was pretty excited to go up on stage and get a certificate.

She also had her year end dance recital and is counting down the days until dance starts again. I'm glad that she loves dance so much. Bai is playing t-ball this summer and is most excited that she has a pink mitt, and that one of her BFFs is on her team. It was kind of crazy at their practice last night, they were the only girls on the team and definitely the oldest on the team. I guess it's not like Alamo where everyone plays t-ball, it's mostly the boys. Their coaches were really funny though and the girls left the field excited for their game and assured that they are the best hitters and players on the team. I'm happy for that boost of confidence, they both needed it.

Bai wants to play soccer later this summer, but we told her we'd have to see how t-ball goes. We don't need/want a repeat of 2 years ago. So we shall see how it goes.

Maddox is dying to play tball and was upset that he didn't get a turn last night at practice. He has no fear of the ball and walks around with either a bat or a golf club most of the time. He's so funny. Golf would be a good game for him. PG city has a cute program called Itty Bitty Ball that we are considering letting him try out. They have 4 classes and teach/play baseball, basketball, football, and soccer. Maddox would love all of that, and it's specifically for 3 year olds. Ahhh! I can't believe he's almost 3! Where has the time gone? It seems like just yesterday I was sitting in the CICU holding him for the first time since birth. One of his favorite things (besides all things sports related) is going to Nursery. Now that surgery has been postponed he gets to go to all of church and was so excited. He has the best teacher ever. We love her so much!

We are planning on playing a lot this summer! Seven peaks, Trafalga, t-ball, library..... It's going to be a lot of fun. Maddox really doesn't like the pool/water at all so it'll be interesting to see how that all goes. Bailee wants to go every day though so we'll have to find some balance.

I love my new job. It's nice to be able to work from home and still be able to take care of my kiddos. It's a bit challenging when Maddox has 'snuggle mommy' days, but it's so flexible that I can re-arrange my self imposed schedule to have those days. It's really a great fit for me. One of the first things I realized when surgery was postponed was that I can go to girls camp! I seriously love girls camp and am really super excited. Yeah!!

Luke is busy at work, and summer will only be busier. He works so hard and I'm so lucky to have such a wonderful husband and daddy for my children.

Life after Walt Disney World has been great. I don't think a day has gone by that one of the kids hasn't said something about our trip. We are so grateful to Make-A-Wish and Give Kids the World, and all of those who made it possible for us to go. It was a really incredible experience, and one that our family will cherish forever. I have been slowly posting pics on the Wish blog, so check them out there.

Through all the craziness of the past few months I have been reminded over and over that my Heavenly Father is mindful of me and that he is always here to support and strengthen me. I was chatting with another heart mamma who expressed that her faith has been shaken through these trials. There's has been a long arduous road. She expressed that she doesn't believe that God steps in and takes our trials away. Otherwise, how could we explain the miracles and the sadness that surrounds us. Why do some people get the new hearts they so desperately need, and others say goodbye to this mortal life? Why do some sweet children need a second heart transplant while others can hold onto their broken hearts a little longer?

The conversation helped me reflect on what I believe. I have never prayed for Maddox's heart to miraculously start working properly. I have prayed that it would work the best it could and that when the time comes we will be prepared to handle whatever trials and surgeries are needed. I pray for strength to teach him, and Bailee, to be happy and to be close to our Savior. I pray that we can accept whatever challenges come to us. And I let Him know how grateful I am to be Maddox's mommy. I know that miracles occur, but I also know that there are plenty of miracles in my life that are not obvious, especially to those not close to the situation. While I wish that Maddox's heart was complete and strong, I recognize that there have been miracles and tremendous blessings because he is in our home. He has touched many lives, and I am grateful for that. There are so many wonderful people I wouldn't know if it weren't for this special broken heart. There have even been missionary opportunities that would have otherwise not been possible. So I am most grateful at this time for the miracle of being strong enough to handle this situation, not alone, but with the love and support of my Heavenly Father, my Savior Jesus Christ, my wonderful husband, my children, our family, our new heart family, and countless neighbors and friends.

It's been awhile

It's been so long since I posted on here. It seems after Facebook I don't blog nearly as much as I used too. Kind of sad. :( We had an amazing trip to Walt Disney World thanks to Make-A-Wish and Give Kids the World. Incredible. I am overwhelmed at the generosity and kindness of so many people. With all the negative we see and hear, it's so nice to be reminded that the world still has a lot of really great people. I am posting all about our trip on the wish blog, so head over there to see pictures and the highlights.

Maddox is in the cath lab right now. He finally got in around 12:45. They are going to check out his heart and make sure everything's good for his surgery in two weeks, as well as get an idea of what to expect. This has been scheduled for so long, it's kind of hard to believe it's finally here. I am definitely ready to be post-fontan and have many years before transplant. I will always try and take it one day at a time though.

It's really strange to be here at PCMC again. It's so familiar and yet there are many changes that have happened since our last stay. We walked up and down the hall between pre-surgery check in and CICU for quite awhile this morning, and just being there brings so many feelings and emotions. There is so much peace and hope in these halls. There is so much strength and bravery. So despite knowing that these rooms are filled with very sick children and very worried parents, there is a spirit here that I haven't quite felt anywhere else.

There are two sweet little ones here right now that I get the privilege of meeting. Both are very sick, but still smiling for the moment. I am grateful our little ones don't seem to know how sick they are and are able to be strong through these crazy times. I am also really grateful for the love and support we receive from our family, friends, and our heart family. It helps keep everything in perspective.

Maddox 'should' be finished in the next hour, so I'll update more later.