Cath Day

Well I can't sleep due to nerves (I should be a pro at sending my baby into a cath or surgery by now - but it never seems to get easier), so I wanted to give a more complete update on what's happening today.

Emma will be undergoing a heart catheterization and biopsy this morning. What that means is a catheter will be inserted into two main vessels (usually one in her groin and one in her neck) and threaded through those blood vessels to her heart. She will be intubated and put under anesthesia for this procedure. They will be looking at heart function and pressures. She's had some high blood pressure lately, but they are hoping to get some really good readings since she'll be asleep (it's really hard to get a good blood pressure on a squirmy toddler!) They will also be taking a tiny piece of her heart to do a biopsy which will check for rejection.

They will also be reevaluating the narrowing of her pulmonary veins and arteries which continues to show up on echoes as a potential concern.

They will also be looking to see if she has any reoccurring issues with pulmonary hypertension now that they've taken her off the medication that helped with that.

We would appreciate prayers for NO rejection and good results all around!

Emma won't be allowed to eat or nurse this morning which will likely make her very fussy...especially since she has to get a blood draw done before we even check in to the surgery center. Blood draws are always so hard for her anyways, since she has such tiny veins because of previously having HLHS. We are hoping they will be able to get the drug levels with a heel poke and then the rest can be done during the cath. Emma is scheduled for second case, so the cath should start about 10:15am.

After the procedure is over Emma has to lie still in recovery for at least four hours. We are bringing Mickey Mouse clubhouse and Frozen to keep her entertained, but would appreciate prayers for her peace and comfort also! Thank you for praying!!

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26

An update on life - Emma is 20 months!

Emma is 20 months old today! Ever since we brought her home from the hospital, time is passing way too quickly! Life has been crazy busy. I started my tax season job again, so now Mickey and I are both working and I also started business as a Norwex consultant at the end of 2016. We are working hard to try to pay off bills, student loan debt (it's crazy to believe we've only been college grads for 2.5 years), and get ourselves into a better place financially, especially because of all the unknowns with Emma's health. We are also busy keeping up with Emma and all of her medical needs, as well as just regular toddler stuff! So life is a little crazy, but we manage. We end up playing tag team a lot with Emma, passing her off in between jobs. But at the end of the day, we always make a point of spending some family time together. Because we are in a busy season, we don't have as much time to post updates, but we will do so when we can. :)

Emma continues to catch up to her milestones and we have been so impressed with her progress!
She loves to paint and color, play with her Little People, put puzzles together, tell us all of the farm animal names/sounds, play with her little kitchen, read books, hug and feed her babies, and play with her kitty and her grandparents doggies! She can stand on her own for a few seconds without holding onto anything, she can walk with help as she says "step step step!", she also likes to push her walker or car around, and she starting to climb!

We've been struggling with nutrition some lately, but we can almost always find something that she will eat, and she's still nursing. This week marks one year of nursing, which is a huge accomplishment! We are working more and more on teaching her to drink from a cup, and we haven't gotten very far yet. But we discovered that she does prefer a glass drinking cup - especially if it's the one we are drinking from! ;)

All in all, Emma has been doing really well, and we are so thankful that she is alive and thriving! A year ago we were getting ready to move home from the Ronald McDonald house in Seattle. Even though 2016 was pretty crazy and involved several more moves, we never ended up back in the hospital for an inpatient stay, which is truly amazing for the first year post transplant!

We are so grateful for our amazing family, friends, and facebook family who continue to show us so much love and support and most importantly pray for us and the health of our sweet girl!

10 days until Emma's heart cath

Next week we will be spending several days in Seattle, because our precious girl has her annual heart cath and biopsy. The transplant team will be checking for rejection, as well as looking at narrowing of vessels and evaluating heart function. Anxiety is definitely setting in for us. No matter how risky the procedure, it's hard to hand your child over to doctors to be put under anesthesia and be worked on. Emma doesn't usually handle the recovery very well, so we are hoping and praying that all goes well this time. It will also be hard awaiting the rejection biopsy results, but she hasn't had any signs of rejection, so we are thankful for that. As we get closer to cath day, please keep Emma in your prayers that she will stay healthy. So many people around us are getting sick, and we really need her to stay healthy for her procedure. Thank you all for your continued prayers. As stressful as this can be, we continue to lean on the Lord for strength.

The end of 2016!

2016 was so much better than 2015 for us! It was still full of challenges, but it was also an incredibly blessed year for our family because Emma is alive and thriving with her new heart! She spent the entire year living life outside of the hospital!!! We are rejoicing and praising God for that!!

Not once did Emma have to go to sleep at night in a hospital bed like she had done so many times the year before. This year alone she had hundreds of appointments and blood draws, took thousands of doses of life saving medication and had a heart catheterization. But it was all outpatient. At the end of the day, we always got to take our baby to our hotel or home. No surgical floor, no ICU, no sleeping on hospital couches, no open heart surgeries, no blood transfusions, no extra oxygen...just a whole lot of living. 

It was only a little over a year ago that it looked like Emma would never leave the hospital. It was unlikely that she would even live long enough to experience her first Christmas. We were running out of options. We stood at her bedside heartbroken as we were staring death in the face. 

But then we were given word of a most incredible gift. Another family who was in the midst of tragedy had made a decision to donate their child's organs, which ultimately saved the life of Emma and likely other children around the country. Emma made it through that high risk surgery better than any of the doctors expected, which was an answer to thousands of prayers. She beat all of the odds, and continues to amaze us every day.

Yesterday marked 3 years since Mickey proposed to me, which reminded us that we've only been married 2.5 years and have a 19 month old who has had three open heart surgeries including a heart transplant, we've lived in 7 different places, and we bought our first house! 

We are so thankful for a full year together outside of the hospital, and are looking forward to many more! But we are also hoping this coming year is a little less eventful! 

Christmas 2016

This was Emma's second Christmas, but it was her first Christmas at home, and her first Christmas old enough and healthy enough to enjoy opening presents! We had a magical day celebrating the birth of our Savior, but also being filled with so much gratitude and joy for Emma's life as we watched her unwrap her gifts and enjoy the day! She almost didn't make it this far. We were so close to losing her, and yet God had a different plan. Her special heart came just in time, and she made it through an incredibly risky surgery and difficult recovery. We are just so thankful to be celebrating another holiday with our little miracle!

Feeding her baby!

When Emma finally woke up around 10am, she was SO excited to see her "new to us" play kitchen!! We were so excited to get it for her when we found it this summer, and it's been hard to keep it a surprise all this time! But it was definitely worth it. She's been busy playing with it every chance she gets! She also got so many other sweet gifts from family and friends! It's been a difficult year especially financially, but we have been so blessed and are so thankful for all those who have loved on our baby girl!

We even got to spend part of Christmas with Emma's little cousin and other relatives!

And after all of the excitement Emma fell right to sleep for a Christmas afternoon nap!

We hope you all had a wonderful Christmas too!

Emma's 1st Heart Day Pictures - October 25, 2016

Happy 1st Heart Day Emma!

You are such a beautiful, strong little fighter and your life is such a miracle! There were so many times that we thought you'd never leave the hospital. But after multiple open heart surgeries, caths, cardiac arrests, strokes, chylothorax, struggling kidneys and feeding issues...and a half of a heart that just couldn't keep going...You have a whole heart now! You're alive. You're home. You have normal oxygen levels. You don't turn blue when you cry. You're an 18 month old who loves life. You've learned how to nurse and eat. You love music. You love Minnie Mouse, You love animals. You're talking. You're learning how to stand. And soon you'll be walking! We Praise God for all of the answered prayers, and for revealing Himself so clearly in your life. 

That third week of October last year, we were preparing to say goodbye to you. The doctors didn't think you would survive much longer and there was nothing else they could do for you. So many issues would come up during rounds, and they would try to address things and make adjustments to meds, but at the end of the meeting, it always came down to the fact that your heart was giving out and you just desperately needed a new one. It felt like my heart was breaking into a million pieces. Your daddy had to go to a military training. So I was there by myself being told by doctors to start preparing to say goodbye, because if a heart didn't come soon, you weren't going to make it. I don't even know how to describe how completely broken and helpless I felt. I cried and prayed more than I ever have. I just wanted you to be okay. I tried to hold you as much as I could. I didn't want to get up from that chair at all, because I knew they were going to sedate you and I wasn't going to be allowed to hold you soon. I tried to hold onto every ounce of hope that I could, but things were getting desperate and you were miserable. Your daddy flew back right away when he heard the news from the doctor. I was so glad when he came back, so we could all be there as a family. They waited as long as they could to intubate you, because your little body was so sensitive to every little thing, that they weren't even sure you'd survive the intubation without going into cardiac arrest. They also told us that once you were intubated, you would stay that way until you either got a heart or were taking your last breaths. 

It looked like those days would be your last. But we didn't know, the doctors didn't know, nobody knew whether or not there would be a new heart for you. Only God knew what the future held. 

There was a family out there somewhere, who suffered a tragic loss, and chose to donate their childs organs and give other children a chance at life. Even though that heart came from so far away, they gave you a chance. Your doctors made a really difficult decision to give you that heart, knowing it might not work. 

I'm so incredibly grateful for the many answered prayers and miracles in your life that kept you alive long enough to get your new heart and get you through that surgery and recovery. 

I'm so grateful for the doctors and medical team that worked so hard to keep you alive and then took a chance on you by accepting that heart for you.

and I'm forever grateful for your donor family who chose to give the gift of life, so that other families wouldn't have to go through the loss of a child like their family was going through. 

Your life is a miracle, baby girl. You are such an amazing, strong little warrior and your dad and I are so proud of you. As challenging and frustrating as your strong will can be at times, I love it. Because that strength helped keep you alive, and I know you're going to need that strength for the rest of your life. I love you so much sweet girl, and can't wait to celebrate many more heart days with you! 

Love, Mommy

Emma's Heart Day

I vividly remember those moments in time a year ago...waiting for a heart and wondering if there would be one in time. I desperately wanted my baby girl to live. I wanted to take her home and hold her, love her, and watch her grow up. But I also had to constantly remind myself that I might not get to. I didn't want to miss out on those moments we had together in the hospital, in case they were our last. That third week of October was probably the hardest week of my life. Up until that point, there had been so many hard times with Emma. Times when we might lose her. But there's was always hope of something else...another surgery, another procedure. By this point we were still hoping for a transplant, but we were running out of hope. I couldn't possibly hope that another child die so that mine could live. Maybe God's plan didn't include Emma living here on this earth. There was no way for anyone to know if she was going to make it or not, but it sure wasn't looking good. I remember so many tears. I wouldn't leave her room for more than a few minutes to walk down the hallway to the bathroom where I would just sink to the floor, and cry to God in tears of desperation for my daughters life.

Two nights in a row she couldn't sleep through the night, before they reintubated her. She would just wake up screaming, the most horrible screeching screams of pain. They kept increasing her pain medicine, but her poor little heart was physically hurting because of the poor blood flow, which basically caused her to have heart attack type episodes. It felt like a nightmare. 

Other than intubating, sedating, and paralyzing her to take the work off her heart, there wasn't really anything else the doctors could do. Her anatomy disqualified her from some of the other potential options. They just kept telling us that she really just needed a new heart. We still always had a sliver of hope, but I'll admit that it was starting to feel hopeless. We were relieved to find out that she was the only one her age in our region waiting on a heart and she could have any blood type because she was so young that they could just replace her blood type during the surgery. So it was just a matter of a heart her size being available in our region. I couldn't just pray for a heart for Emma because I didn't want to be praying that someone else would lose their child. One of the transplant coordinators reminded us that it's not that a child dies so that yours can live. Because sadly, people die anyways. But organ donation provides their family a beautiful choice to bring life in the midst of tragedy. 

When they told me that, it helped me clarify my own emotions about it all, and I was able to pray that Emma would live long enough until a perfect heart was available for her. And I prayed that in those tragic moments of losing a precious loved one, families would make the decision to donate life. That's exactly what a family did, and it has allowed Emma to live another year. We don't know the family, and may never get to meet them, but because of their decision, Emma has experienced so much life. I'm sure their decision saved other children as well. At least I hope so, because it means that even though their child's life was cut way too short, the life of another child was able to live on. 

We are so thankful that Emma was given a second chance at life, and she has exceeded the expectations of so many. The doctors were so leary of putting that heart into her, because the heart was traveling from so far away, and Emma was so critical.

• She was supposed to come out of surgery on ECMO. But she didn't. That little heart started beating strong right away in the OR. 
• They expected her to have a weak heart, because it had such a long eschemic time. But she doesn't. She has a strong heart that doesn't need any additional heart medication aside from anti-rejection meds. 
• They were supposed to reopen her chest after surgery. But they didn't. They had everyone standing over her ready to reopen, and then her numbers improved right at that moment. 
• She was supposed to need dialysis. But she didn't. 

Those are just a few of the many answered prayers. Everything with surgery that night went perfectly, according to the surgeon. They got her opened up and reconstructed her aortic arch, and as soon as they were ready for the new heart, it arrived right on time. So many problems were expected, but things couldn't have gone more perfectly. We are so thankful for the way God revealed His glory that night and answered thousands of prayers!! Emma's life is truly a miracle. 

We are just amazed and thankful for how well she's doing and for the life she's been given. The donor family will forever be in our hearts. We want to take the best possible care of her hero's heart and never forget the family who lost their baby and then made a choice that saved our baby. 

We are also so thankful for the countless medical staff who have taken care of Emma over the past 17 months. If you are reading this, thank you. You loved our daughter like she was your own. You laughed with us and cried with us. You became like family when we were living in the hospital, and most importantly you worked so hard to keep Emma alive, and for that we are forever grateful.

Thank you also to the family, friends, and thousands of followers who have prayed for us, loved on us, and supported us throughout this journey. We couldn't have done it without you.

As we celebrate Emma's heart day, and honor her heart donor, we ask that you would love extra hard, hug your loved ones a little longer, and find some way to bless someone else today. May God Bless you all. 

Happy Heart Day sweet girl! 

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever."
Psalm 73:26