Wednesday, March 5, 2014

Dad's long winded update:)

The past 24 hours have been a whirlwind of emotions to say the least. As we lay down to get some “sleep” we had an amazing conversation about our greatest hopes and fears before we nodded off. Like I had told many, just because we had done the heart surgery thing before, things were not easier this time around. It was just different. Little did we know how different it would be. With Lil’ Mis we were thrown into this heart defect world with a lucky bout of pneumonia. It was God’s way of revealing to us why she couldn't gain weight or keep up with her friends. He was ready to heal her in a miraculous way. By all human accounts we had caught her problem too late. Her body had already adapted to the functionality of her heart and there was no turning back. She was in the beginning stages of heart failure and there was almost nothing we could do to stop it. Again these are measurements in human standards and not God’s. He had other plans. Through the use of an amazing medical team he healed Lil Mis, but it was a rough road emotionally for us. It was filled with set back after set back. Just because a Dr. may say that something is to be expected or “oh that’s normal” doesn't make it any easier. She spent 9 days with a breathing tube before she was allowed to wake up. She became so dependent on the narcotic pain meds that we spent the next 2 months weaning her off of them. We spent 18 long days in the hospital. The funny thing is that this is nothing compared to some of the other heart families we have grown to know and love.

About 4 or 5 days after Lil Mis’ surgery we found out that Megan was pregnant with #2. #2 turned out to be Lil Man or “mini me” and most folks compare him and I. We prayed and prayed for no heart condition and that portion of our “please let him be a healthy child” prayer was answered. But about a week after he was born we got a call saying that his newborn screening came back abnormal. Long story short, he was diagnosed with MCADD, a 1in 17,000, genetic metabolic disorder in which his body fails to process and store certain fats. He is unable to fast since he has no reserves for his body to run off of. In recent years Dr.’s have started to attribute nearly half of all SIDS deaths to metabolic disorders like his. The whole adage “never wake a sleeping baby” can be fatal rather quickly for these kiddos. He was woken up to eat a bottle every 4-6 hours for the first 3 years of his life and then graduated to 8 hour time periods until he was 5. Now he can go 12 hours! That all being said, the miracle with Lil Man is that this is one of the mildest cases his specialists have ever seen. His semiannual blood tests (where were monthly and quarterly at certain points)are usually so good that if it weren’t for the fact that we were all had our genetic profiles tested to confirm the disorder they would argue if he even had it. Despite having to take a trip to the ER every time he gets the flu so he can get guaranteed sustenance, he is a miracle. God knew exactly what we could handle and he has done an amazing job using us to show his miracle work.

We said after the first 2 medical kids that we were done. I’m not going to lie, part of us was angry with God for unanswered prayers and for all the earthly hassle He had put us through. This earthly perspective was clearly fogged from an average of 4-6 hours of sleep per night and a temporary woe is me attitude. The funny thing is that during this time we became more involved in our local church community. He was working in our heart and surrounding us by a whole host of families who eventually morphed into our family away from family. Being a medical family is tough, but being a military medical family is even tougher. Being geographically separated from parents and relatives who you would normally rely on for help can be a devastating blow if you don’t have a community of friends that you can rely on. As our roots grew deeper with our community of friends so did our faith. Whether our friends went to the same physical church as us or not, their constant outpouring of support fed us emotionally and kept us going.

Something inside our hearts changed and we began to feel that we wanted a 3rd crumb grabber running around the house. The walls we put up were broken down and we put our faith in the Lord and knew that he would provide no matter what. Within 2 months of practicing for baby #3, the proverbial bun was in the oven. Because of our family history Mama was put through the ringer of tests. We prayed and prayed for healthy. We knew the statistical odds but we prayed on. Now I’m sure that there are many who think that us bringing another child into this world was totally irresponsible, and that’s fine. They are allowed to have their opinion. At my job we often joke with military students who prefer to do things the hard way that it may be their opinion that throwing their parachute and letting it drag them out the door first before they exit aircraft is the best way to get down, but again that’s their opinion while the rest of us know better. Instead we chose to trust in Christ and that through Him all things were possible.

Lil Sis’ first ultrasound revealed our worst fears. Congenital heart defect. Well, here we go again. But his time was different. In the womb she was diagnosed with one condition and after birth that was corrected to a less severe version of what Lil Mis had. I’ll admit that we didn’t fully understand what that meant until now. We were told that while surgery was required it wasn’t as urgent as Lil Mis’. From that day forward we circled her in prayer constantly. We relied on our community profusely. One of our biggest prayers was for God to use Lil Sis and us as a way for people to be drawn closer to Christ by watching the miracles that were sure to happen. This was a bold prayer based on our previous fears and frustrations. And I’ll admit that while I am a fairly positive person the fear was often paralyzing this time around. It forced me to rely on Christ and those he put next to me.

I know by now you are all saying just get to Lil Sis’ day one update, so here is goes. Our prayers were answered and then some. Our story was shared by one of our pastors during last week’s services. The talk was partially on the power and strength of doing life together as a community. God is using us to reach others in a powerful way. It has now been 24 hours since Mama and I placed Lil Sis in the physical arms of the surgical staff. She was a rock star! There was suspicion that her heart we trying to do some of the repair on its own prior to surgery and that was confirmed. Dr.’s may say that they just simply got it wrong in the previous ultra sounds but we know better. She is a fighter. Surgery was expected to take 6-7 hours and lasted only 3½. Her breathing tube was out within 9 hours. It came out at the exact time Lil Mis was getting out of school for the day. I suspect that this will be a source of contention in the years to come with Lil Sis bragging how she can do in 9 hours what Lil Mis took 9 days to do but we’ll see. She has continued to progress nicely. She is clearly in pain and as a tummy sleeper normally she is a bit uncomfortable with having to sleep on her back. All she wants to do is eat and drink so we’ve been chowing down on ice chips and Pedialyte. We hope to be moving to juice and crackers soon but there is still a litter concern on whether she’s ready. Her lungs are mostly clear with only minimal congestion which is to me expected. Her heart is pumping great and her oxygen levels are good most of the time. I say most of the time because she and I have been in a battle of wills to keep her nasal cannula in. I allow her small victories every once in a while for the most part I’m winning the battle for now.  They are weaning her from most of her medications since she has been fighting to do most of the work on her own. There is hope that they may remove some of her chest tubes and IV’s today along with her catheter. Hopefully that should make her more comfortable. Mama and I are getting some sleep and thanks to the amazing Ronald McDonald house we are eating well too. The Bigs are enjoying time with G-ma and G-pa and so far all is quite on the home front.

I will end this dissertation here. The support we had yesterday was so overwhelmingly amazing. We got to spend time with some of those closest to us while we waited during surgery which was a huge blessing. When the word can that she was done early there was cheering, hugging and tears of joy. It will be a moment I will remember forever. There were folks wearing red and praying like crazy to support her. We want to thank all of you for all that you have done and all that you continue to do. It is you who has made this possible for us. Once Mama wakes I’m sure I will be banned from blogging more for lack of brevity but I just wanted to give you my perspective on the days event and what got us here. We love you and continue to pray for Mia’s healing and for you and your families as well. Have a great day and God bless.

Dad and the whole M Party of 5

For I know the plans I have for you, says the Lord. They are plans for good and not for evil, to give you a future and a hope. In those days when you pray, I will listen. You will find me when you seek me, if you look in earnest. – Jeremiah 29: 11-13

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