Over due update

We  have been the hospital now for 75 hours and things continue to go great! Lil Sis had a very productive day yesterday. She had more IV's removed and then she was moved into the step down unit because of her progress. Once in her new room the nurses removed all 3 chest tubes and she was a trooper! Grandma came to visit and I got the opportunity to go home to see the bigs and attend men's group while mom had a friend visit over dinner! All in all it continued to be a very uplifting day. That being said, what would be a stay at the hospital with out a little action. At about 4am we woke to her screaming and covered in blood. She had tried to roll over and sleep on her tummy and accidentally pulled her hand IV out. It looked worse than it actually was and she was cleaned up in no time. Unfortunately, it had to be replace and it took 3 nurses and me to hold her down to make it happen. Her tornado mode was in full effect. She is now happy again eating breakfast and watching some PBS kids. It's almost like we are home, which coincidently may happen as early as today! :) We continue to pray circles around her and her recovery and can't wait to reunite her with the bigs. Thank you all for the prayers and support! It has been amazing!! Until next time.

Love 

Dad and the M Party of 5

And we know that in all things God works for the good of those who love him, who have been called according to His purpose. Romans 8:28

Day 2 update

Well today was another day in the right direction. We started the morning with Lil Sis being able to start drinking a bottle of soy milk (her favorite!). She then had her femoral IV taken out along with her catheter. By lunch she was offered crackers and Cheerios but instead opted for juice, jello, and apple sauce. After lunch she had another IV removed (there are still several more) and the O2 nasal cannula came to an end. Her O2 sats look good and she was happy to ditch that pesky thing. During that time we were blessed to have a friend from church arrive who was allowed to come in the room. The visit was great and she even got Lil Sis to laugh hysterically for the first time post surgery. Before she left she led a beautiful prayer as we prayed over Lil Sis while she drifted off for a nap. After nap she managed to pee all over her bed while changing her diaper which prompted a bath and the first real snuggle time with Momma. I think she did it on purpose:) Since then she has continued with period of sleep and mostly joyful awakeness. As the nurses change shifts and I head to snag some dinner for us at the Ronald McDonald House she continues to make steady improvement. We could not be more blessed with our surroundings and the friends and family who are supporting us.

Love,

Dad and the M Party of 5

Rejoice in The Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:4-7

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 3^rd 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.

Love,

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

So far this morning

What an early morning for us. Lil Sis did great being woken up and in the car to the hospital. She just wanted to get down and play while we waited. She did well taking her sleepy medicine and started getting loopy, which was pretty cute to watch. She really doesn't like the oxygen lead they put on her finger (basically a bandaid with a red light on it- nothing invasive). It's funny because it's such a small thing but it drives her crazy. As expected the staff was all so nice this morning at the OR area. A sweet woman took her back and Lil Sis was sleepy enough to not fight it.
We've made it over to the Ronald McDonald House and had some breakfast and now the waiting game beginnings. We'll have some company through the morning to help pass time and just longing for when we get to see her again.

Pre-op update

We went through all of Lil Sis' pre-op tests and paperwork this morning at the hospital. Amazing how little tid bits of information come rushing back from 6 years ago. The staff we met with were all amazing and so sweet to Lil Sis. She did wonderful with very little crying. There's a peace we're feeling after meeting with the same surgeon who did Lil Miss' surgery! 

Please continue your prayers for her and the family. Surgery is set for tomorrow, Tuesday at 7:00 am. They are saying it will take 4-6 hours. 

Also want to thank everyone who donated blood directly to her for tomorrow and those who donated in her honor this past month! 

Love,

M party of 5

Life Changing Moments

There are certain times in your life you'll never forget. For my list I have amazing memories like the night I met my husband, when he proposed and when I first saw a double line on the pregnancy test! All amazing life changing moments! Then I have other moments in my life, that were life changing as well, but not all sunshine and roses:

The phone call from Lil Miss' pediatrician saying to take her ER to see a cardiologist because her chest X-ray showed an enlarged heart
A week later hearing from Dr. Doom and Gloom there was a possibility Lil Miss couldn't have surgery and we would go into a "honeymoon period".. Until her heart failed her.
Seeing Lil Miss right after heart surgery
Finding out I was pregnant with Lil Man while Lil Miss was still recovering in the hospital
Hearing Lil Man's NBS (newborn screening) came back abnormal
Hearing (again from Dr. Doom and Gloom) that Lil Sis would need heart surgery too

We are entering the final few days before Lil Sis' surgery and I know there are bound to be more life changing moments in my life and theirs. A ton more tears- some in fear and sadness and some accompanied by smiles. I'm ready- ready to see how this amazing beautiful life of mine will play out.

Welcome to Holland

As we count down to Lil Sis' surgery date, I came across this random story inside a medical folder for Lil Man. I always just flip past it. Never took the time to read it- plus the title "Welcome to Holland" never drew me in. But before I placed it in the recycling pile I figured I should read it since I did receive it 5 years ago. Well turns out its a great story. One I think others who have medical children should read. I'm posting it below. I want to make sure to have a copy floating around blog land so I can share when I hear of new parents facing a new challenge. And hopefully helping them through that initial diagnosis- whatever it may be.

Welcome to Holland
by Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have no shared that unique experience to understand it, to imagine how it would feel. Its like this...

When you're going to have a baby, its like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo's David, the gondolas in Venice. You learn some handy phrases in Italian. Its all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plan lands. The stewardess comes in and says, "Welcome to Holland." "Holland?" you say, "What do you mean Holland? I singed up for Italy. I'm suppose to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in flight plan. They've landed in Holland, and there you must stay.

The most important thin is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. Its just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole group of people you would have never met.

Its just a different place. Its slower placed than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

So I don't agree 100% with her end, because I think the pain can go away. I think the joy that any child can bring a parent can out weight any "Why me?" thoughts. I love the illustration this story paints. Life might go the way you plan, but take a second look around and see the beauty in Holland.

Tulip festival in WA when I was pregnant with Lil Miss