Life after Transplant

Our transplanted life – Thankful

Thanksgiving. A time where we are all reminded to take a step back and consider the amazing things that are happening in our lives. A holiday set apart for family, friends, turkey and happiness.

This year, I didn’t need a holiday to help me remember to give thanks. I give thanks every time Laura learns something new, smiles, laughs and yes, even when she cries. One year ago today, we were in the hospital with Laura – she was doing rather well all things considered and the only thing we were really battling at the time was getting her extubated. Within the week we would go from hope to another surgery (diaphragm plication) to complete despair as we discovered that Laura had gone into heart failure and

the words Heart Transplant were first uttered by our medical team.

I will never forget Paula sitting down with us and telling us that she just wasn’t sure whether Laura’s heart was salvageable. What an odd choice of words… it was almost as if we were trying to get the rotors on our car machined only to find out they would need replacing. As odd as it was though, it was true. We had to determine whether Laura’s heart could go on after so many hits. It was decision time – to go ahead with a heart transplant or to go ahead with a very risky surgery. If you have been reading Laura’s Story you know we chose the surgery but in the end, Laura’s heart could not be salvaged.

If I were to go back and tell myself that I would be thankful for a heart transplant I would not have believed myself. We were broken when we heard the possibility and couldn’t fathom how our daughter could lead a normal life if she needed the transplant. She would be sick all the time, would require multiple medications, would be hospitalized frequently – how would she enjoy her life?

What I didn’t know was that that gift that she was given on January 7th, 2017 was not a negative thing in any way. It brought her home to us, allowed her to learn how to eat and drink. It gave her the chance to learn to roll over, sit up, stand, walk and talk. Laura now says 6 words at only 12 months old. She says dada, mama, milk, baby, duckie and puppy. I wonder every day how she has been able to not only catch up developmentally but become advanced in some areas of her development. One year ago, I would never have thought it possible to be able to truly mean it when I say that

Laura’s heart transplant was the best thing that ever happened to her.

It’s not only Laura’s healing and joy-filled life that I am thankful for today, though. As I sit and think about all the blessings I have witnessed over the last year my heart is full.

Today, I am thankful for:

My husband. A.J has been the most amazing husband through all of this. What we endured with Laura was not easy but because of our relationship, it wasn’t nearly as hard as it could have been. Even on the worst days, he made me laugh. He was there to hold my hand and get me through and he was happy to let me do the same for him. When Laura caught a glimpse of God on September 26th, 2016, He was broken. He allowed himself to feel the immense fear and sadness that goes along with losing your child and then pulled himself together when Laura needed him most. He told jokes and won the hearts of all the hospital staff with his gentle soul.

Since being home, we made the decision to change our diet to a low-sodium diet for Laura’s sake. We knew that by changing our habits early, we would be able to be examples about how what we eat determines our health. Laura is highly susceptible to Coronary Artery Disease due to her anti-rejection medications so a diet low in trans and saturated fats and sodium and high in omega fatty acids will greatly help her combat this predisposition to the disease. A.J was willing to change everything about how he ate for our daughter and because of it, he has lost 50 pounds and counting – allowing him to be more active and involved in Laura’s life and for that, I am thankful.

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My parents. On September 11th, 2016, we were told the devastating news that Laura’s heart was broken and would need to be fixed as soon as possible in Edmonton. After the news absorbed we began thinking about practical issues to this situation. We thought about how we could afford to pick up everything and go to Edmonton – how would we pay for our bills at home and in Edmonton when our budget barely covered our costs at home while I was receiving EI? My father, being the man that he is, told me not to worry. Of course I gave him all the reasons why I was worried and his response was simply

We have money in the bank that we were saving for retirement but we can use it all to pay for Edmonton.

It wasn’t a small amount of money and retirement isn’t that far away. The thing is, though, my parents would not have even thought twice about this. The fact that he offered didn’t surprise me because that’s how things in my family have always worked. You need a car? Take mine. Trumpet for school? I’ll cover your payments if you can’t. Help with rent? Of course. It’s not as if my family is well off. My parents make practically no money – they are pastors/officers and they make less cash than minimum wage but that never made a difference when their children were in need.

Not only did they offer to help financially but they offered to come with us to Edmonton. After considering their offer, we accepted and they traveled with us to Edmonton where they remained for a month. In Edmonton, they cooked for us, cleaned the apartment, did the dishes, did our laundry and were our personal chauffeurs but they never complained. They were there to take away trivial burdens so that we could focus on Laura. When Laura went into cardiac arrest and we had no answers, my dad led us in Prayer because although we didn’t know what was happening, God did and He could be there with Laura when we couldn’t. He put out a call for prayer to all the Salvation Army officers (pastors) without details, simply asking for prayers for Laura. She needed all the help she could get.

Since being home, my parents spoil Laura rotten exactly the way grandparents should. Laura adores them both but always has a smile waiting for my mom. She has waited years to be a grandma and I feel like she was born for it. She never had a grandmother, or a mother for that matter. Somehow, though, she has turned out to be the most amazing mother and grandmother all on her own. She always has a gift for Laura and has about a million pictures of her littering the walls of her house – she really is smitten with this whole grandmother business.

My dad has taken on the grandfather role quite well also, even if many people think he is her father – especially when he’s wearing a hat concealing his baldness. He may not look like a grandfather but he certainly loves and spoils Laura like a grandfather should.

My brother and sister-in-law. My brother came to the hospital to meet his niece right after she was diagnosed with TGA. He couldn’t believe that she was so sick but he lent a logical and level-headed ear when I took to explaining her condition. My mother and mother-in-law were so distraught by the news that it took a while to listen to details but my brother knew that I needed to talk about the science of it all – bringing logic to the table was my way of dealing with the crisis. He met her for the first time in the NICU and was wrapped around her little (or not-so little) finger in no time. He told everyone how big her hands and feet were and how big she was in general – I think he liked that she had acquired some of those traits from our family and he could see himself in her.

Shortly after he and my mom left, his then girlfriend came to meet Laura. She brought Laura a very cute little bear which was such a beautiful gesture because it helped having someone treat this like a celebration. In all the confusion and chaos of the diagnosis and plans to leave Saskatoon, Laura’s birth hadn’t really had a chance to be celebrated. She came to the NICU to meet Laura and wanted to know everything about her diagnosis – she is a nurse after all. She went home that evening and contacted a pediatrician friend of hers to obtain as much research as possible to better understand what we were dealing with – she may not have been Laura’s Auntie officially yet, but she was certainly already committed to this tiny person.

The two of them drove to Edmonton countless times to visit – an 11 hour round trip which was made over the span of weekends – and it was always exciting to see them.

Since we returned home they got married and Laura was able to be their flower girl. When they had become engaged in December we didn’t even know if Laura would still be around never-mind being in the wedding party – it was a very happy day. They both love Laura so much and it is so great having them in our little town just one block away so that Laura has the chance to see them often.

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My other family. My mother-in-law was born to be a grandmother. Sure, she was a great mother but I feel like being a grand-mother was her true calling and she just had to be a mom first. She bakes, she quilts, she sews and she does anything else you would expect of a grandmother. My own grandmother was not this person. I love her dearly and I wouldn’t ever want her to change but she wasn’t this type of grandmother. I was glad that Laura would have the baking, sewing, quilting grandmother that I had always read about and watched on TV. Throughout my pregnancy she became more and more excited to meet the 4th grandchild in the family but the first that would live near her! When Laura was born she was excited to hear that she had a grand-daughter but before she had a chance to meet her, she heard the terrible news. Still, she came to the hospital beaming because even if Laura wasn’t healthy – she was her granddaughter no matter what. I could see the heart-ache on her face when she realized she wouldn’t be able to hold her but she was happy to stroke Laura’s face and meet her.

My sister-in-law also came to the hospital at this time and came with her inquisitive nature wanting to know more about Laura’s unique anatomy. She works with horses and has studied anatomy quite a lot in her equine schooling and was interested to find the links to what she knew about the heart and what was going on with Laura. She brought gifts and was exciting to meet Laura. She had been buying Laura gifts well before she was born and was very excited to have a niece close to home. She was to leave for school in a few days and was just happy she got to meet Laura before she had to take off.

My father-in-law is not like my mother-in-law. He doesn’t do hugs and kisses or baking or cuddles. He is not the grandfather that will run up to the baby to pick her up and play with her. He is, however, the man who will make her laugh and make her think. He will remind her so much of her daddy because I see them in each other every time I’m around them. She will love his laugh because it is loud and ridiculous and could make anyone smile. She will love how he can socialize with everyone in the room and make them think he is loving it even though all he wants is to be alone reading a book in his room.

My brother-in-law came to visit Laura a few times in Edmonton even though he was very busy with his training for his new position at Air Canada. He brought a beautifully made outfit sewn by his wife and he brought his humor to our situation. He is very exuberant and loves people – it is never boring when he comes around.

I grew up with a grandmother. She was amazing and I never felt like I needed anyone else but Laura will have 2 grandmas, 2 grandpas, 2 great-grandmas and a great grandpa – she is a very lucky little girl. She also has 3 aunties, 2 uncles and 3 little cousins – she will grow up filled with so much love in her little life.

My extended family. I was not always good at keeping people in the loop but thankfully, my parents and A.J’s parents were much better. Our grandparents were so excited to meet Laura even if it was only through pictures. My grandmother had a knot in her stomach from the time Laura was diagnosed to the moment she came home with us – she is such a caring woman who has loved and cared for what must be thousands of kids after her 50+ years in the foster system. A.J’s grandparents were always very happy to receive news that Laura was improving and it hurt them to hear when she was in a bad place – we couldn’t wait to be able to go see them at the farm with Laura (which we were able to do this summer!). All of our aunts and uncles were great and always wanted to hear how Laura was doing and how we were doing being so far from home. The support was very welcomed and helped us so much in the tough times and in the frustrating times when we just wanted to be home.

All who prayed. It was crazy how many people were coming together in prayer for Laura. My church family prayed every week and I know there were many who prayed daily for our little family. The whole Salvation Army community across Canada prayed for Laura. The church we began attending in Edmonton prayed continuously and kept their congregation up-to-date with what was happening. A.J’s great-uncle and aunt prayed in Southern California and had added Laura to their prayer-chain, people across Canada, the United States, England and I’m sure many other places were sending prayers up for our little girl all the time. It was touching and it really made us feel so incredibly thankful to know that so many people were praying because although there was not much else they could have done – they could pray and let God do what He could.

All who visited. Over the course of our stay, we had family come visit but we also had many friends who came to visit us in Edmonton. One of my good friends from University hopped a flight, stayed one day and then had to fly right back to Saskatoon but meeting Laura was so important that she made it work. Our really good friends drove 9 hours each way with a one year old to come visit us for New Years. My wonderful friend from church came down for a weekend to meet Laura and brought her a beautiful quilt that she still uses to sleep with. My good friend from my camp days also took the time to come visit Laura near the end of her hospital stay and it was so nice to see her after so long in Edmonton. The fact that they were willing to travel so far really let us know how much they loved us. There were many others who let us know that they were willing to come if we needed them and to just let them know but we never called on them because we knew it was a long trip. We were thankful to know that they were there for us though. There were many others who couldn’t be there but they gave of their own money to help us while we were in Edmonton and that helped immensely.

My heart-mama friends. When you’re in the hospital for 6 months you meet a lot of new people. Since arriving home their are a few moms that I talk to regularly who understand what I am going through. Having them in my life is the most precious gift. We can talk about medications, oxygen, sickness, feeding problems, stress and anxiety, germs, and whatever else we feel like talking about. These moms have been to hell and back and they understand what it means to be a heart mom. Their support and love has been irreplaceable for me and I know that we will remain friends for many many years, even though we are all in different cities and provinces!

The doctors, nurses, RT’s and other staff at the Stollery. I don’t know how much more I can say about these people. Without them, we would not be spending this thanksgiving as a family of three. They gave us our daughter but they gave us so much more. They gave us knowledge which is one of the most precious gifts a person can receive. They showed us what it means to love with all your heart even if you know you are going to get hurt. They showed us that doctors are human – they cry, smile, laugh, feel. When Laura was in a bad place their hearts ached and when she was doing well it made them glad. I have the amazing opportunity to keep in contact with them through email and send them pictures and updates on Laura. They know better than anyone that after all that Laura endured, she should not be the child that she is today. And that brings me to…

God. Let’s get real here. Laura should be a vegetable. Science says that Laura should have had SEVERE neurological impairments after all she endured. Even though the doctors and surgeons at the Stollery are magicians and nobody understands how they do what they do, they alone could not have done what they did alone.

King David said

” Give praise to the Lord, proclaim his name;
    make known among the nations what he has done.” 1 Chronicles 16:8

Without God, none of the blessings that we received this year would have been possible. On Sunday we were challenged to question WHO was receiving our thanks on thanksgiving. Are we thanking ourselves for all we have done? Are we thanking our family and friends because they’re so amazing? Of course they are but God is who has made it all possible. Through Him my family received our miracle and it is to Him I give all my praise and all of my thanks on this very special thanksgiving day.

 

I hope you all have a thanksgiving filled with blessings, family, friends and turkey 🙂

 

 

2 thoughts on “Our transplanted life – Thankful”

  1. May God bless you continually. I have prayed for Laura ( and you) over the years and I am glad to hear of her progress. She seems to be an amazing little girl. May God grant you many more good days, the 95 per centres, than the hard days. Good or hard, He is our Father and He loves you and is in control of all your days. Every blessing. Diane May ( Major, Rtrd)

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