Monday, October 6, 2014

Its Always a Great Day for a *Rainbow*

Its never been a secret that Jesse & I have always wanted a big family. We weren't sure if this was going to be in the cards for us after our rocky start to parenthood. But our Lord has entrusted Jesse & I with a life, once again. This is something we have prayed and thoroughly considered the past several years as we sifted through the "what just happened" phase of 2009/2010 era. But we are at peace at this point in announcing our McGinley #4 will hopefully make a scheduled appearance at the end of April 2015. 


We have had a few ultrasounds with high risk already thus far into our pregnancy and so far, this pregnancy has come with extremely minor complications (nothing like with the twins or with Ellie). Some may call this pretty flawless actually. We don't really know what that is....but certainly hope it keeps it up! 
We'd love easy...

But most importantly, there has not been one appearance of a hemorrhage yet. THAT, my friends, we owe to the Glory of God. I had hemorrhages with each pregnancy. I blame the large one we had with the twins on Eli's ending condition. For some reason, my blood fights my pregnancies and tries to take them from me. A hemotologist in Dallas diagnosed me with a 4g/5g gene mutation. There's not much research on this condition other than they know its a blood clotting condition. And given that my father died at 36 years old of a massive heart attack, it makes sense that I inherited this gene mutation. But due to the lack of research on what this does to a woman during pregnancy, it cannot be confirmed that this is what caused my miscarriages and also contributed to Eli's complications. 

I have also been hesitant in putting this pregnancy out there because we have several friends who have been trying to become pregnant for quite some time. This makes my heart ache, as we've been there and its such a tough issue to weed through when you wake up each morning. Please know, my heart has been and is with each of you every single day, as I know our Lord and Savior has his precious hand on your heart and situations. 

If you are a praying friend, I ask you to please lift up our situation and pray that this baby arrives safely. 

Before I formed you in the womb I knew you, before you were born I set you apart. -Jeremiah 1:5

Monday, August 18, 2014

UPDATE: Eli's *Other* Heart Valve with CryoLife

Happy 5th Birthday, Eli & Walker! 

In 2009, when we were signing his little body over for heart valve donation, we knew Eli's valves would be eligible for transplant for 5 years. Now today, in 2014, we have located our precious Cambrie (Eli's aortic valve recipient). But back in 2009, 60 months seemed like a lifetime away and I had no doubt there was "plenty" of time for the valves to be requested and used (although I never dreamed we would hear of the outcome and certainly never know "whom" was saved). But for some of our very involved friends, the question has been asked "so what about Eli's pulmonary valve?" and "Will you seek to find that family too?". Well, Jesse and I want to share with you today some very encouraging news regarding Eli's other gift of life...

CryoLife employees releasing balloons to Heaven for Eli on 8/8/14, Eli's "Gift of Life Anniversary". Kennesaw, Georgia

Since our personal involvement with CryoLife and the close relationships we have formed with their team, we have been in negotiations the past few months on the right thing to do if his pulmonary valve wasn't requested by a surgeon 8/28/14 (the expiration date for Cryolife). But our dear CryoLife team had been in touch with a heart surgeon who is excited to use Eli's pulmonary valve for transplant in December in a country not accessible for life-saving pediatric heart surgeries. This program is called "CryoKids". Here is the link to learn more: 

What does this mean? 
Eli's pulmonary valve will be shipping out of the CryoLife facility in Kennesaw, Georgia any day now and will be on its way to a medical facility in the United Kingdom. When the surgeon with CryoKids arrives into the UK in December, he will then take Eli's pulmonary valve with him to the country in which he will be performing the surgery. Word is that we will receive a summary from the surgeon about his surgery after the first of the year. 

Will we search out to know this child?
No. Jesse and I have prayed on this and really searched for God's direction. We feel so absolutely blessed to have and know Cambrie in our lives. We also know that it was a 1 in 100,000,000,000 chance to have actually connected with Eli's recipient. Our heart are very content with the current situation. And with the support of our friends at CryoLife, we have watched this beautiful story transform into somewhat of a miracle in our own lives. I know I've said it before, but how blessed are we to be able to watch this little girl grow up with a living piece of our son inside of her? 

We will equally pray and remember the other baby in which will receive his pulmonary valve. We are very excited to know what country our Eli will be associated with forever. But we only see it as right if we continue to speak on the great things that have been done. And just simply, count our blessings. 

The last few hours of Eli's life, as a mother holding her dying baby boy tightly in her arms, begging him to let go, I just pleaded and whispered into his ear to please just come back to me. Show me that we were making the right decision. Come back to me in that baby or 2 babies that he would save. He has done that, two-fold. December will be another month worth celebrating in our family, all thanks to CryoLife. 

On another bright note, Cambrie's mommy and daddy, Nick & Kiara, will be speaking at CryoLife in October to the staff so that they can hear about the Eli-Cambrie journey from the recipient side of the story. We are anxiously hoping to attend as well to hear them speak for the very first time. They will be flying to Arkansas in November for Thanksgiving and I can guarantee you that the most thankful place in this state of Arkansas will be in this very household. 

Team, if you are reading this, please know that you are making a difference in this little family's lives. Thank you for eating and sleeping heart valves, BioGlue, and vascular tissues on a daily basis. Without you, this momma wouldn't feel like she held the hope of the world in her hands. You are doing a beautiful thing! 

Wednesday, July 2, 2014

And Though She Be But Little, She is Fierce.


A Donor Momma's Thoughts with a Clear Heart: Post Surgery


As you all know, the past 2 weeks have been a struggle for Cambrie as she experienced a large set-back during her open-heart operation on 6/18. We met our precious "Baby Girl Maine" in March and we were so immediately in love with her. Cambrie's parents told us then of her upcoming surgery to finally let her heart be 'free' from the band and the hole. Somehow, I thought we'd be fine with knowing the outcome via text messages at the time of receiving the news of the upcoming surgery. But as the weeks led up to her surgery, my mommy heart became burdened and heavy; like we needed to be there.
In Maine.
With Cambrie.

Some of my closest friends urged me to go if I was feeling this way. I couldn't accept the thought of 'help' to get there. But thanks to my dear friend and fellow Molly Bears advocate, Dannah, the plane ticket page was launched and so many of you felt that our little family needed to be there too. You made it happen.

Believe me, if it weren't for you, we couldn't have gone.
No way.
We will FOREVER be grateful. Here's why...

Can I tell you- WOW. I now know the reason why I felt that burden to be there. God was letting my mommy heart know that Cambrie was going to be in a critical situation and I would have been crushed to have witnessed this via cell phone texts.

Seeing "Baby Girl Maine" in the PICU, lifeless, with all of those tubes and wires running out of her body brought back a flood of emotion that was a bit disheartening for me. Last time I saw those types of tubes was the point we were saying 'Good bye' to my pride and joy; Eli. And to see his recipient fighting for her life gave me a fear that I hope to never feel again, as I couldn't imagine reversing this life and not having Cambrie in it now. She's given me so much joy and peace. Her life is a planted gift to me that only my little Eli was able to give to me.

God truly knew the desires of my heart when he opened that door for us with the Gadbois-Cates family on the other side. 

We had slowly walked in to her PICU room on day #3 when the nurse stopped to ask who we were. I stuttered as I was trying to {ackwardly} explain "We, um, we are....We are the donor family?" when the nurse quickly replied "Oh yes! Mom and dad said you may be by to see her. You have permission to come back whenever you want." I was stunned and for a moment felt a great gratitude to Nick & Kiara for valuing us so much that we, us, this little fraction of the puzzle, could go back and see their precious and critical baby girl? They have given us such a large part of their lives by opening it up to us to watch her grow now that they are even granting us permission to come in and be with her? It dawned on me that we really are indeed, family now. I was beginning to think they might love us just as much as we love them. Of course if we are matching apples to apples, Nick & Jesse have a bro-mance that I've never seen Jesse take on before. Long story, but they are BFF's now.

Something else burdened me that has always been hard to think about. Maybe this was another reason why I didn't feel the need to go to Maine in June to be with Cambrie during her surgery too. And to tell you the truth, I don't talk about it much. At 7-8 years old, you don't process death clearly. I had already lost my father at that point from a massive heart attack but I also had a young dear childhood friend lose her life during her heart surgery too and that rush of emotions came back to me. Heart surgery in my mind doesn't end up well.

My daddy is gone. Amy is gone. Eli is gone. God, please don't take my Cambrie too. 

There came a day where I had to be brave and hand it over to God. Our plane tickets left out of Portland, Maine before Cambrie was even fully stable. She was still having ups and downs and that was one of the hardest days of my life leaving her like that (not that being there could have made any difference) but especially knowing that Kiara (Cambrie's mom) was hurting. That was the worse, as I feel as connected with Kiara as I do Cambrie. And Kiara was in a place of unassurance as I was in just a few years ago.

But the next day, a text came across my phone with a photo of Cambrie with one eye open. I finally saw progress through the eyes of an iphone. (No complaints here!)

Each day after our departure, Cambrie began to have more successes rather than relapses. And just yesterday, she was released to go home. 

And thanks to Kiara's numerous daily updates, the uphill climb for Cambrie was more pleasing to us to be able to see from home because we knew she was over that hurdle. Cambrie is a fighter. I haven't seen a fight like that since Eli's last hours. Those two lives are like 2 peas in a pod.

I can totally tell you today that 4 years of fighting to get to the point of "Baby Girl Maine" made me feel although I felt like I had conquered a mountain earlier this year. But today, that mountain was so much more strenuous, so much more emotionally involved, and so much bigger than I could have ever dreamed of. My eyes have been opened to my God's many blessings involving trials and each one of these steps I begin to heal from this more and more. Our precious hope that was once transparent is now showing us strength in a baby girl who changed everything in our paths.

In Cambrie's nursery reads:
True story. True Hope. True bravery. 
The End. 


Thursday, May 15, 2014

The Space Between {Cryolife}

There's one facility in this world that has housed every inch of my heart, my hope, ....my son. I have prayed for this facility- wherever it was, because it would ultimately lead to the peace in my heart that I needed to keep going on in this life. I knew the people there handled my son's heart. I knew they did the dissections of his aortic and pulmonary valve in August 2009. They filled out his paperwork. They tested and housed and packed it up. They mailed that aortic valve to Dr. Quinn in Maine. They are the ones responsible for the cycle of a healed heart of the donor mom. They didn't know it at the time, but they held my entire world.

Cryolife. The place where Eli's heart went. Kennesaw, Georgia.

Last December, as we were traveling the state of Arkansas during Eli's Donate Life Rose Parade floragraph finishing events, we were fortunate to have met Ronda Horstman, a regional rep with Cryolife who was flown to Arkansas to join us for one of the events. Just a week prior to meeting her, we were given the news about "Baby Girl Maine" via email and I was floored when we were actually introduced to her in person.

I just knew she had flown in to give us more good news about "Baby Girl Maine".

Well, that wasn't the reason after all. It was actually because Cryolife just felt that it was important to have Ronda out there to celebrate Eli with Arkansas. But Ronda would answer so many questions that Jesse & I had over the years that very day and little did we know, she would become a dear friend in our lives through the Rose Parade and through the process of meeting Cambrie. We cherish her friendship very much now.

Ronda gave us a call and asked us to fly out to Cryolife to speak with the staff and technicians about our 4-year journey of heart valve donation. Knowing a visit from that facility was on our dear friend, Becky from ARORA's bucketlist too, Cryolife flew all 5 of us out last week.

Physically walking up to this facility took my breath away and caused me to get...ah....a bit choked up.

I was about to enter our house of hope; the facility I had knew safely held the living piece of my son was right under my feet. And it was very likely that a piece of Eli was still in there; his pulmonary valve- the one valve we haven't received a notice on- his other gift of life.

We were given a tour around the facility. Saw something through an observation glass wall that I never thought I would witness:
...a heart dissection as they dissected the aortic valve off. It was incredible. Just incredible.

And heartbreaking.

Knowing that less than 48 hours ago, that person had passed away and had given the gift of life. And that somewhere, a family was planning a funeral. And then it dawned on me that this was us 4 years ago. This is how quickly the turn-around is on a donation of life and the seriousness and dignity that Cryolife takes in order to preserve that life-vessel. I was watching our situation first hand through those technicians hands as they dissected that heart and as I listened to Tim explain to us what was going on. It was there that I realized that Eli was in good hands from the moment we signed his little life over. No more doubts existed.

Annnnd if you were wondering- Eli's pulmonary valve remains at Cryolife waiting for that surgeon request. It has until August 28th, 2014 to be requested and transplanted (Year 5). Can I tell you that the feeling of being in the same building as his valve was a good feeling?- I was close to a part of him again. That hadn't happened since I left Cambrie in March.

We spoke to 2 large groups that day in their auditorium. We were able to share our video testimony with them, talk about what happened thereafter, and most importantly, show them the news clip of Kim Block's of when we met Cambrie. A job, most days, seems like just a job. For Cryolife, it is no different. But what they were able to experience (and the joy of being able to share it) was to face the critical point in a family's life and be able to watch the beautiful outcome of a tragic situation. Its taking the tragedy out of the hands of the beholder and witnessing a true miracle of God at work within their career each and every day.

The Space Between: 


To get from:
Point A: the death of my twin son to Point B: the transplant into Cambrie means that there are many individuals who do this as their "career", although I believe what they do is much more than a career. Its a faith-built calling.

Truly the most humbling part of the entire day was when Ronda stood up and asked people to stand. The names on the list that she held and called out were the names of the employees involved in the handling of Eli's donation; whether it be the call-person who took the initial call from ARORA on 8/8/09, the person who unpacked his heart, the technicians who dissected his heart, the quality control team, the clerical team, and even the final man who packed up that aortic valve and sent it to Portland, Maine (see photo). They stood up, they waved at us, and for each one a tear would drop from my face. I think Jesse was surprised as much as I was. In fact, we are still talking about it.

Many, many unexpected tears from this momma last week. I am more knowledgeable, stronger, and even more thankful (and blessed!) for being able to meet the people who had a part of Eli's life in their hands. They held my hope, they processed my hope, and they sent my hope.......to Maine. I thank God for Cambrie each and every day.

And for the *potential* situation that Eli's pulmonary valve will be requested and transplanted before August, those employees who are (and will be) within that process are in my current prayers, as they, too, are part of a greater picture.

It was truly one of the most amazing experiences we'll ever have and its something that we'll remember forever. We are so blessed to have been able to share this with Becky from ARORA, as she and Lissa have been there since the very beginning of Eli's journey into Donate Life. Such an honor to stand before this Cryolife team and give back to them in form of good news. And a job well done to them. They save lives every day. And I can't help but to think to myself here (a message I want them all to know) the quote from a great movie "The Help":

"You is kind. You is smart. You is important."

McGinley Family believes their work is VERY important! For so many reasons; even for donor families. 

(Becky Gertsch (ARORA) holding Walker, Jodie, Jesse holding Ellie Reese)





Tuesday, March 11, 2014

Eli's Before, His During, His After.: Meeting Cambrie

I have sat here for the past hour staring at this screen, not sure what to write or how to start this off. I've deleted and added and deleted and added. You know what? 

I'm starting fresh. 

I was going to give you a run-down as to what all happened. But right now, I'm just going to start off by telling you what is on my heart. 

Baby Girl Maine has changed my life. This is the best summary I have for you. 

I swore after 9/11 that I would never fly to the northern states. Not that its relevant, but I've always felt as if the south was a safe-haven. Knowing that one of our connection flights was in Washington, D.C., I had my fears. But ultimately, once on that plane with my little family, all anxieties subsided. We were on our way to hold a little girl who held the only living piece of my son. And that's all that mattered. Outside of my family's safety, I had nothing else to lose. 

From the moment we came down that escalator to see all of Cambrie's family and friends waving posters and balloons, yelling as we came down, nothing mattered when Kiara immediately handed Cambrie to me. Everything became silent. There was no yelling or travelers. There was not a distraction in the room. I just felt overwhelmed with faith, full-circle. I've never felt what I felt last Wednesday. 

Actually, I doubt I ever feel it again. 

But my heart was joined with Baby Girl Maine's heart, which was also joined with Eli's. It was there that I felt liberation. True liberation (Thank you Regina, my wordsy friend!). Liberation to the point that every cry, every outburst, every sleepless night, every luncheon with my son at his graveside, every speech, every fear, every fight that I have felt for 4 years straight all came to an empty point of no more. This is what true love was. This was true liberation. This was the feeling of true relief and joy. 

Cambrie is healthy and living. And he had a hand in that. One special little girl in this world has him. And he resides in Cambrie. There is no other greater joy that I can feel ever again than how I do right now to know her. 

How blessed we are to watch her grow up into a young woman. 

My life will now be able to move forward in a positive direction spiritually and emotionally. I no longer look at Eli's photo in disbelief or shame that he was ultimately removed from support based on our own decision. But instead can look to it as a "Job well done, my child." 

That's how I feel. I look at Cambrie and know that Eli did a job well done. More than any of us can accomplish in our own lives. And the greatest achievement here is that he had a life of no sin and no regret. MY GOD is an awesome God. He moved me in and out of the storm to plant me here at the end of this journey. He has opened my eyes to a greater worth and fulfilled promises. 

And here she is. 







Wednesday, February 26, 2014

A Box for Cambrie

Last week we enjoyed a family vacation to Durango, Colorado with 2 other couples from our church small group. It was a first for us to go there. And another first awaits us one week from today as we will be the farthest north Jesse and I have ever been: Maine.

And for very good reason: to meet the little girl who holds a piece of Eli's heart.

We've had 4 weeks to prepare for this trip but there has really not been a way to actually "prepare" for this type of meeting. We've dreamed of this day for 4 years, never really expecting the opportunity to arise considering how rare this type of meeting is.

In December, just finding out that the deed was done; the surgery had taken place and that there was another human being out there in this world that was saved because of Eli was all the news we needed to move on. We didn't expect anything more than that. We were actually quite blessed to even have had that news.

A friend of mine asked me yesterday if this meeting with Cambrie and her family in Maine would 'set me back' in regards to my healing process after Eli. My immediate and confident answer was "No". Absolutely not. Because? We never wanted his death to be in vain. We always wanted to know that purpose and that it was 'done'. Definitely not a set back.

Ever.

Instead, this is a blessing. Christ has carried our faith through this to the very end. For that, I remain thankful.

In my small attempt to 'prepare', Jesse and I pulled open Eli's box. I knew there were things in there I wanted Cambrie to have. It took me several days to get ready to open that box. That box sucks the breath right out of my body each time I open it. And that makes a handful of times its been opened, mainly to put things into it. But Sunday afternoon, we did it.


We opened it up, laid everything out. It was quiet as we looked through 4 years of articles, keepsakes, things I had held on to for Walker one day. Things I had hoped to give to his recipient(s). It was quite a healing experience for us both. It took about 2 hours to go through the box. But ultimately, a small pile was made to go into a special little box we purchased for Cambrie. Maybe this is something she will appreciate about when she gets old enough to know what happened.

I held this little guy so close internally to my heart for 8 long months and prayed over him each day. And then for 5 days I did the same after he was born.

Now, Cambrie is the one who was chosen to carry him with her closest to her heart.

Organ and tissue donation is such a gift. Not only was he a gift to us, but he has gone on to be a gift to Cambrie and her loved ones.

This quest certainly has not set me back ANY. Its quite the opposite actually. It has reaffirmed to me that he was fearfully and wonderfully made. He was perfect. And perfect for Cambrie. How blessed we are to be the family who gets to watch her grow into a young adult. We are starting this venture as Cambrie just turned 1 years old. A lifetime of memories awaits our families who have been blessed by 1 little boy. Its an honor to be called Eli's momma.

The work that Cryolife, ARORA (Arkansas Regional Organ Recovery Agency), New England Organ Bank, and Dr. Quinn and his assistant Lori have put into our trip to Maine has been spectacular. A photographer friend who has done volunteer work with our I Can! Arts and Resource Center in Arkansas is also volunteering her time to tag along to Maine to capture the meeting through photography. We have hired a videographer to work with our own Tyler Tarver to create a part II testimony video to our first one (you can see it here: https://vimeo.com/50460733 ). This whole venture will be incredible.

I tear up on the thought of this. Several times a day I tear up when the thought comes across my mind. I'm tearing up now as I type. I don't know what I'm going to be like by next Monday....

Can I also share how amazing people have been? One of my fellow Molly Bears momma's sent me this bracelet she ordered from Etsy to give to Cambrie. And she also donated a 2-night stay at the Marriott for the photographer who is traveling with us. And a dear friend of ours who has been with us from the start of Walker and Eli's pregnancy is offering to assist us in our rental car. We've paid for our plane tickets which was quite a chunk of money but I can't begin to tell you all what this assistance means from the bottom of my heart. I cried long and hard yesterday knowing so many people are actively working to make this perfect. They are dropping their own time, their families, their lives, to make this happen. I hope some day we are able to repay each of you in some way.

To Cambrie: Your box will travel in our laps on the flights to you. It is an honor to give this to your momma for you. My prayer is that you know that you have your very own guardian angel who beats away with you each time you breath in. I hope you know that we thought of you when we took him off of support. We thought of you during his last breath. You have given us peace and we couldn't have asked for more than this. Thank you Gadbois-Cates Family. We love each of you.

Monday, January 27, 2014

A Heart the Size of Maine

53 months...

53 months since we said our goodbyes. 53 months we have woken up to our life-long reality of guilt, prayers, talks with God, sleepless nights. Endless hope...

53 months of finding our real, and consistent faith in Jesus Christ, reviving our marriage, and welcoming a rainbow baby. 53 months of being a part of some amazing state and national projects in his name. 53 months of meeting some very amazing people, welcoming new life-long friendships and relationships into our lives, & the painstaking task of having to let go of a few bad ones... 

It was about Always believing something wonderful was about to happen... 

And it did. 


It finally did. 


I've never loved math. Nor math problems. Actually, I've always been terrible at math. So-much-so that I almost was not able to graduate with my bachelors degree; I was just that terrible with math.



But this equation makes me love math. And this is what would make me understand whole-heartedly: 




Baby Girl Maine was born on January 12, 2013 in Maine. Among other things, she was born with a narrow aortic heart valve. She would be the recipient of Eli's aortic heart valve on January 14, 2013. 

Thanks to the help of Cryolife & ARORA (Arkansas Regional Organ Recovery Agency), we were told on December 11th, 2013 that Eli did indeed, save the life that God intended him for. The tears flowed. Our hearts raced. This momma hadn't cried that hard in 4 years. 

The weight of the world had been lifted off of these very tired shoulders. 

Here we were, about to move on to the next phase of life. We were 2 weeks away from climbing onto that airplane to Pasadena, CA. to join Donate Life America at the Rose Parade for the Donate Life Float. We had less than a year left to know if his valves had been placed into another baby. My hope was fading by the day. But God knew my heart, my pleads, my desperation of knowing that we made the right decision. I wanted it so badly that my heart yearned to have Eli back. If he wasn't able to save a life, then why did I let him go? God knew. He knew Cambrie long before she entered this world. And He guided our hearts to make that decision for Cambrie in mind. 

We thank God for Cambrie. 

The relief is very surreal. I have slept longer and harder in the past week than I have in 4 years. 

I don't guess I've realized how much this effected my days. But I finally feel like my peace with this situation has finally set in. Cambrie's mom, Kiara, and I have spoken a few times and we have gone each day texting each other and sharing photos and thoughts. The commonalities we have brings me to think that we'd be friends even outside of this situation. And let me tell you, that's food for my soul. 

We are in the works with the surgeons office, WGME CBS 13, ARORA, & Cryolife to set up the meeting. We are looking at possibly flying up to Maine in 5 weeks to meet the baby girl who holds a piece of our hearts. 

....and a piece of Eli's heart. 

Trust in the Lord with all your heart and lean not on your own understanding;
in all your ways submit to him, 
and he will make your paths straight.   Proverbs 3:5-6


To be continued.











 

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