2016…What An Incredible Year! 

As we celebrate the birth of our Savior and the year comes to a close and reflections start, it’s easy to look at our life and say,  “Whew, we got through that one.” But as I look back, and think of the blessings, mercies, and MIRACLES God provided us with, I think its more appropriate to say “WOW, Lord! YOU are AWESOME! Thank you for your goodness!”

Just to illustrate my point, TJ and I put our heads together and created a list for you. It was harder than you think…but not in terms of thinking of enough ideas to fill our list, but rather in narrowing it down so you don’t spend an entire week reading about our life! So without further ado, here it is;

The Wyssmann Top 10 of 2016

     10. Celebrating our 8th wedding anniversary and our 33rd, 5th, 3rd, & 1st birthdays! 

     9. Ella started kindergarden in Mrs. Caywood’s class at Elyria Christian School. 

     8. Emrie started in the inaugural Pre-K3 class with Mrs. Archer at Elyria Christian School. 

     7. Tanner started walking, is beginning to master running, loves to dance, and has started talking! 

     6. Meeting our friends who have become family in Michigan. 

     5. Returning home to our community, friends, and family after living for 6 months in Michigan.

     4. Ella got her first haircut and lost her first tooth!

     3. Emrie got her first haircut and learned to ride her bike!

     2. On March 6th, Tanner received his hero heart!!!

    1. By God’s sovereign grace…we are excited to announce, Edyn Wyssmann, due April 2017!!!

Merry Christmas and Happy New Year to all!!!  Thank you, once again, for your prayers and support you have given to our family throughout this past year. We are also so very blessed by all of you! We love you all and God bless!!!

                        -the Wyssmann’s

It’s been a while…but that’s a good thing!!!

It’s been 6 months, give or take, since  my last update on Tanner’s progress. For the most part, we have been at home, happy and mostly healthy! Learning to deal with all the “normal” kid things that happen when you have a baby, decifered with having a kid with a heart trandplant.

As many of you know from facebook, we have had 2 checkups with Tanner’s cardiologists since I have last posted an update. Two very different types of checkups, that’s for sure! Our appointment in September started with a trip to our local emergency room because we thought Tanner was coming down with a stomach virus. So there we were sitting in the ER, browsing facebook, Tanner was snoozing, and completely expecting to get some fluids and some help keeping his anti-rejection meds down when the doc walked in, quickly shut off the fluid that was running in his IV and delivered the worst case scenerio that any of us could think of. One of the markers in Tanner’s blood work that they use to measure heart function was elevated. And not just a little bit, enough to get everyone’s attention and even though there was a short stop over in Kansas City, Tanner’s transplant team wanted him in their care ASAP as they were fearing Tanner was rejecting his new heart. It earned him another Survival Flight, this time with a team from U of M on a private jet, a heart cath, and a biopsy to ensure that there was no rejection. Fortunately, once again we were shown that God has big plans for Tanner and the biopsy showed absolutely no rejection. Just another cool story to tell everyone when he gets older…

This visit was thankfully more routine in nature. We flew up here on Monday, had appointments all day yesterday and are flying home as I type  (thankful for plane rides at nap time!) Definitely a busy couple of days, that’s for sure, but nothing as stressful as the last trip. Not that this visit didn’t have its own little bump in the road, Tanner’s blood work done in the morning didn’t look quite right to the team, so we had to repeat it in the afternoon. They then wouldn’t let us leave until it came back and everything was in the clear. We squeaked by, yet again, this time avoiding another hospital stay. 

The cutest story of the day comes during our visit with the head of the transplant team. Everytime we come to Michigan, along with the routine tests, we meet with every part of the entire team, including child psychology, dietitians, nurse practitioners and doctors. Today by the time we talked to Dr. Schumacher, who is the head of the transplant team, Tanner had watched his dad shake the hand of quite a few people. Dr. Schumacher, or as we are lucky enough to commonly refer to him, Kurt, shakes TJ’s hand and heads across the room to do the same with me. But before he could reach me, Tanners little hand flew out from underneath his blanket in the direction of the doc with a gesture that could only be interpreted as “Hey you, shake mine too!” After shaking my hand, it became quite the game to Tanner who got about 10 hand shakes and an equal amount of high fives and lots of smiles from all involved.

Even though its been a while since my last update, we are continually grateful for all of you who pray for our son and our whole family! We are also so grateful for God’s unending grace and His abundant blessings in our lives. We are so very fortunate and thankful to be home, healthy and excited for another Christmas together. If I could still request something as I sign off here, please say a prayer for those families who aren’t able to be together this holiday, separated by both hospitalization and the one’s enduring the loss of their loved ones.

Merry Christmas and God Bless you all!

Big boy didn’t need any sedation for his echo!

C.S. Motts sure is pretty this time of year…

2 Month Check-up

Monday, while driving back to Saline from dropping TJ off at the airport in Detroit , I was trying to lift the spirits of 2 broken hearted little girls by turning on some music we could “jam” to.  The song “God Is On the Move” by 7eventh Time Down came on and we were enjoying singing it at the top of our lungs. If you haven’t already heard it, you really should google it!  When it finished, and we finished giggling at ourselves, Ella piped up from the backseat with this statement:

“God IS on the move, Mama. He’s moving us home!”

I replied with an ever hesitant reply that was supposed to help them not get their hopes up too high, not wanting them to be too disappointed with the idea that we had to stay in Michigan a little while longer. I don’t, at this point, remember exactly what I said to her. She told me to have faith, and trust God. What an amazing reminder of the faith that God wants from us…a child-like trust in His sovereign plan!
Fast forward to yesterday, and Tanner’s 2 month post transplant check. Little man did great with all his tests and blood work. He’s still on the skinny side of life, but other than that, there are no concerns with the function of the new heart or his desire and self motivation to grab life and LIVE it! The doctors are very happy and impressed with Tanner’s current state. So impressed, that our living restrictions have been lifted, and as soon as logistically possible for us, we are headed HOME!!! That’s right, you heard me…HOME!
Nothing could have surprised me more. I honestly had prepared myself for the minimum of another month here in Michigan.  We are still in the tedious period post transplant in which we need to avoid as many germs as we possibly can, and definitely aren’t headed out into public places just yet. But, Tanner’s heart looks so good that they don’t want to see him back for another 6 weeks and at that point, he can take a flight in his very first commercial airplane!
There are so many thoughts and emotions that are running through my mind and my heart as I reflect on everything; I don’t even know where to begin sorting them out. What I do know is that this is yet another lesson from God. I was talking with my friends up here the other night, seeking support for my heavy heart, and one of them started talking about the saying “you believe in God, but do you believe God.” This journey has been hard. So. very. hard. And I struggled, a LOT…I’m STILL struggling! I struggled not to lean on my own human understanding. I struggled in trusting God’s perfect plans and His timing, and not selfishly wanting what I thought would be best. Fear, doubt, worry, frustration and disappointment were always the result that I found when I did this. But the other night and again in the car on Monday morning it was put right in front of me, like it was printed in big black letters on the billboards we were driving past. You believe in God, but DO YOU BELIEVE GOD. Just like the song says, and Ella reminded me, God IS on the move in our lives. And I must trust, with child-like faith that He loves us and knows what’s best. He has gone before us in everything we do, and in this lies the strength, hope, joy, and happiness to continue this life. Whatever today may bring!

To all of you who have helped us out with meals, gifts, donations, thoughts and prayers we THANK YOU for always supporting us and helping us through these hard times. Its been a long year, thank you for standing behind us!Your continued thoughts and prayers for a safe and swift trip home are appreciated! We’ll see you soon!!!!

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Such a laid back kid. Waiting for everything to get started at his appointment. It was a 5 hour appointment!

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This is how he filled his time when all the tests were complete and we were waiting for the doctors.

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Sun’s out, gun’s out! Can’t decide if we’ll miss the “mild” temps (we’re happy if it tops 60 some days!) in Michigan, or not! Excited for some Kansas weather though!

Michigan Life…

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It’s been a little over a month since the last update that we’ve posted, and I really hate to jinx us,  but things have been going pretty well! Just as we expected, there have been some feeding issues that continued after leaving the hospital.  But just because we expected the issues,  doesn’t mean I didn’t slightly…ok, a little more than slightly…loose my mind when Tanner started refusing to eat his bottles again. In his defense, he has been dealing with a runny/stuffy nose attributed to a cold, or teething, or allergies since leaving the hospital. Which can make any baby not feel like eating much.  But, I still bugged the transplant team to no end for about two weeks because in my mind there had to be something wrong,  as this was how he acted before, when his heart wasn’t able to support him.  We tried a little of everything to get him back eating like he was following surgery, but nonetheless, it culminated with a trip to cardiology to have the team paged after our neurology appointment about 2 weeks ago. I stood in the room with the team,  and they checked and listened to him, weighed him, and humored me to every extent.  After doing all of this, they looked at me and said they see nothing wrong with him.  That I need to maybe embrace the idea that Tanner has had so much forced upon him during his hospitalizations that he is rebelling and trying to control what he can. We came home with the plan to transition him to solids to supplement what he will/will not take from the bottle. So far, without wanting to jinx anything again, this plan has been working.  He’s been maintaining a good weight, and they don’t want to see him back until the 10th of May!
We have gotten him into PT/OT through the Michigan early on program.  Their evaluation says that he is functioning mostly at a 6 to 8 month age range, but also doing quite a few things that are developmentally appropriate. Because of the surgeries, and long hospitalizations, its hard for him to do the cross body movements necessary for transitioning into the movements that babies his age are usually doing (the action of sitting up, transitioning into a crawling position, etc.).  However,  with that said, he is getting stronger by the day and is desperately trying to keep up with his sisters.  He has recently begun army crawling across the floor, initiating the movements that PT/OT would like to see him doing on his own,  eating puffs and yogurt snacks by himself, and talking to anyone who will listen like crazy!  It’s so wonderful to see him have the energy and interest in these activities!
The girls have been keeping busy and playing hard.  They have fallen in love with Ms. Nance, the woman who has graciously opened her home to us, and look forward to her coming home daily. The girls have even painted some garden rocks for her flowers so thay she’ll never forget them! The house has a beautiful back yard that allows them the ability to play and run off a lot of energy. Thankfully, it’s finally starting to turn to spring here,  and we have had a few days that we’ve been able to go outside to play.
There are many, many people who need to be thanked for holding us up throughout this past year. (Can you believe Tanner’s first birthday is  just a little under a month away!?) Your thoughts, prayers, gifts, meals, fundraisers, care, and kindness for our family have been truly humbling and we just can’t say thank you enough. While this journey is extremely hard at times and I desire nothing more than to be able to come home, there is the daily reflection that I have as I look at my beautiful baby boy…it is by God’s grace and the generosity of another family whom we may never know that this is all possible. All of the milestones that he is finally able to chase after, all of the smiles and the baby laughter, the shoulder nose wipes that he has become amazingly sneaky with, the play he is able to do with his sisters and they with him, and all of the sleepy bedtime cuddles. God has BIG plans, we may not always know or understand them at the time, but we are so ever grateful for the opportunities that we have together as a family right now on the weekends and look forward to the day when we can safely share our son with all of you who have supported and prayed for him and lifted us up! God bless you all, we hope to see you soon!

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It’s Time… For an Update!

It’s been well over 2 weeks since I last updated everyone at home on Tanner’s progress. As I sit here and type this, he is currently almost tube, wire and line free! He has been taken off the monitors because we won’t have them at home. All he has left is his NG feeding tube, and we knew that his feeding issues would be the hardest to absolve. We are mostly leaving the tube at this point because Mr. Picky won’t put the effort into eating for anyone but mama. We are working on taking most all of his food by mouth, as well as a slew of new medicines. He does alright with his three “big gun” anti-rejection meds, but the smaller ones, like his stomach protector and his vitamin give him a little trouble.  The look on his face says that they taste just awful!  At this point, getting his anti-rejection medicines to the right levels is what is keeping him in the hospital. It seems a very delicate balance between too high and too low.
It’s was a great weekend for many reasons, starting with picking up Ella, Emrie and Daddy from the airport Saturday! It was a day that we’ve all been waiting for, for a very long time. Everyone is healthy and we finally got to spend some much-needed time together as a family! The girls and Tanner hadn’t spent much time together since their very first visit at the end of January! So, along with celebrating the sacrifice that our Lord mad efor us, we joyfully spent our time playing at the bed side, Tanner sat in his high chair just talking as loud as he possibly could to be included in the numerous different games we played in the room, and we even got to take him for a walk in the beautiful Michigan sunshine Sunday afternoon. Tanner fell asleep within minutes, but the girls had a blast running some laps around the big circle, playing hide and seek, and chasing the chipmunks!
The girls are now staying in Michigan with me and Tanner, so we were all incredibly sad that we had to take Daddy to the airport on Sunday afternoon. There was a rush to get him to the gate, because we took as much time together as we possibly could. And definitely some big tears on the way back to Ann Arbor!
Monday and most of Tuesday passed fairly quickly, or at least as quick as they could for 3 children in a hospital room. We got the news Tuesday during rounds with the doctors that Tanner was “probably” going home. We all got really excited, but it took the rest of the day to actually have the discharge paperwork in hand. But, at about 6:00 yesterday evening, Ella, Emrie, Mom, AND Tanner exited the hospital for the first time since January 12th!!!
Home has become a relative term for us, as the transplant team has requested that we stay in the Ann Arbor area for the next 3 months. When TJ and I got that news, we were a little disappointed, to say the least. It’s been so long, and we would love to have all of our family under one roof again. But, in discussions with Tanner’s doctors, this is the best thing for him. He needs to be monitored closely for these first 3 months, and I’m glad that we are close to the doctors who know him from the inside out. Fortunately, we have been able to find a home to stay at, with a new friend whom we have met through our friends at church! We feel completely blessed and grateful for the way that this has all worked out. The Lord has truly provided through this entire journey, and although we aren’t all at home just yet, what a joy it was to carry Tanner out of the hospital!
Thank you all for your continued support and prayers. We love you and miss you all. Just a little while longer though, and Tanner is coming home with a new lease on life…and it’s all possible because of organ donation. Please, if you haven’t already considered becoming a donor, do it now! #donatelife #tobebornawarrior

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We're bustin' out!

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Pajama party!!!

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The three amigos, back together again!

Change of…Clothes, Please?!

The past few days have been perplexing to say the least. We have been having more and more good moments, sitting up and playing for long periods of time in bed, sitting with Mama and relaxing watching favorite movies, even putting on a mask and going for a walk around floor 11! Some serious fun for being stuck inside a hospital!
But then, daily around 6pm, there has been consistently a moment when Tanner’s tummy would back up and basically quit digesting. It’s still getting used to good perfusion and actually having food inside it! But, this lead to quite a few clothing changes for him and for me, and unfortunately it was very painful for Tanner. I hate throwing up as is, I can’t imagine what he is going through only a week after open heart surgery!  No one was sure what was causing this, as the rest of the day he handles food just fine. But, they also weren’t surprised, as it seems a fairly common problem in pediatric transplant kids. So, yesterday they started him on a bowel regimen of miralax during the day hoping that would help move things through his tummy a little better. They also dialed back the pain meds that can slow the motility of his gut down as well. I was becoming a little discouraged as the day progressed today that the plan hadn’t produced any real results and didn’t seem to be helping him out much. This afternoon around 5, I noticed his belly getting distended and round with gas again, and he started complaining which is usually my que to get the nurse and see about giving him a suppository for some relief. So I scooped him up and hit the call button and sat down to rock him until they got there. He fell fast asleep in my arms very quickly, before the nurse came in. So we decided to wait until he woke to give him anything. About a minute after the nurse walked out of the room, he opened those big blue eyes, looked at me, and started crying. I started wiggling him around to get up with all the wires and tubes to press the call button again. Then, as amazing as it was to both me and Tanner, I heard a rumble from down under! I was so caught up in saying “yay, Tanner” that I didn’t realize exactly how much rumble there was! Needless to say, I still needed a change of clothes, but we celebrated this time as Tanner produced those results all on his own and has successfully played and had fun through an evening and bedtime routine without feeling really bad in his tummy!
As for a plan for the future, and for going home, it’s still all depending on how Tanner does. Mainly on how his body continues to adjust to his new normal. Figuring out and relearning to eat is one of the biggest battles he is facing right now. That might not seem like a lot to you and me, but to him, whose stomach has never functioned “normally” before because it didn’t have adequate blood flow and considering the fact that he was completely unable to eat the 2 months prior to this surgery, this is a huge hurdle. It’s taking baby steps that tend to be a few forward and sometimes one backward before lining out in the direction of success. If we’ve learned anything, for Tanner, slow and steady is going to win this race! So for now, we’ll celebrate the small victories, even if it is just pooping on his own!

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Ready for bed, and still happy!

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3/11/16

A lot has gone on in the 3 days since I last posted an update on our warrior. I can’t keep up with him!!! He has been successfully extubated, they have started continuous feeds and were working our way up to full feeds, then today he took an entire bottle by mouth! They are weaning sedation meds quickly as he’s dealing very well so far with the pain management part of post op this time around. He should be off all sedation by the end of the day today. He is off all oxygen support as of this afternoon and is handling that like a champ!
The biggest challenge we have seen thus far presented itself early yesterday morning when Tanner’s heart rate went shooting pretty high. His heart has a lot of inflammation to deal with along with being denervated. And the easiest way to describe what is happening to him in the current rhythm he has is that there 2 nerve centers in the heart that are fighting each other for who gets to be the boss and initiate the heartbeat. It’s called a junctional rhythm.  However, the good news is that the doctors are confident that this will go away with time and it is a very common issue after transplant.
He is still pretty sleepy, but there have been more and more glimpses of Tanner as the sedation meds wear off.  He woke up late Wednesday not really crying, but certainly complaining and saing “mama” over and over. Yesterday afternoon, when he woke, he was less out of it, and started to play a little. I even got a little half smile out of him! Today he is even more with it, playing peek-a-boo, talking his baby babble, and full out smiling at me a lot!!! What a God given blessing to see our son’s personality again! 
We’ve been asked what we know about the donor family on many occasions. We don’t know anything about them at this point. In our educational binder there is the ability to write a letter to the family. However, we are not allowed to provide any information except our first name and all letters will be screened by the Donate Life organization. We are encouraged to wait a while before making that contact to fully observe and soak in the complex emotions that come along with a precious gift such as this. Before the transplant, when we were sitting and waiting, I didn’t think that I would have any trouble grasping what was going to happen, I thought I understood and had a hold on how I would feel afterward. I didnt. I still don’t. There are so many emotions that I just can’t grab a hold of. From the enormity of the strength it took the donor family to be able to give the gift of life to our son when faced with their darkest hour to the sense of responsibility I now feel to another child. I am simply overwhelmed, with gratitude that seems impossible to express, with just everything. I do, however, completely  understand why the transplant team looked at me and said, take your time, take it all in, so you don’t forget.
On that note, thank you all, once again for your thoughts and prayers for our family. We are hoping to move out of the PTCU for the first time in 3 months, sometime in the very near future. When that happens, so does the education process for coming home!!!!!

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Smiles!

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