Saturday, June 6, 2015

Update on cardiology appt. and a special moment!!

Yesterday's appt went well! As always it was a long trip driving to Dallas and back in one day, but Ella was a trooper! Most importantly we got a good report on Ella's heart! Everything continues to look wonderful and we are just so thankful for each and every good report! Our next step will be to continue to pursue her GI issues with her GI doctor and we will see her cardiologist again in October! 

As you all know, yesterday was the 2 year anniversary of Ella's 4th open heart surgery. Celebrating that by being back in the hospital was not our idea of fun, but we made the best of it and had an incredibly special moment. Ella had drawn a picture for her surgeon of him operating on her, so since we were going to be at the hospital we decided to stop by his office to see if he was in so she could hand deliver it. Unfortunately he was in surgery at the time, so we gave the picture to one of the ladies that works in his office to give to him, but after hearing Ella tell her all about the picture we decided to go back to his office and wait for him to come back so he could hear for himself because it was just so cute!! When he came in Ella was able to give it to him and tell him all about it! It was just so sweet! It turned out to be a great way to celebrate being two years post Fontan after all!

Wednesday, June 3, 2015

2 years

I can't believe it's been two years since I got the call asking if we could be in Dallas the next morning for pre op and send our baby into her 4th open heart surgery the day after that. We knew it was coming, but we weren't prepared for it to be so soon. Ella needed the surgery and they had a last minute opening so we took it. It was emotional and stressful to pack for an unknown amount of time in one night. Friends went out and shopped for the things we needed and delivered them to our door late that night. We packed as fast as we could and tried to get some sleep before heading out early the next morning to face the long drive and an even longer day of pre op testing. It was all a bit of a whirlwind of fear and focusing on what needed to be done. There were tears as we drove away wondering once again if it would be the last time our family would ever be home together.

We drove straight to the hospital, we didn't even have time to drop off our luggage at the Ronald McDonald House. There were weight checks, blood draws, EKG, echo cardiogram, blood pressure check... but Jesus was with us and Ella was so very brave. By evening we left the clinic and went to settle into the RMH to spend our last night out of the hospital for awhile. We ate in the courtyard and played in the grass. I gave her as many hugs and kisses as I could and kept telling her that I loved her. We had done our best to prepare her for what the next day would hold for her, but how do you tell a 2 year old that they will be having open heart surgery... again. She was all smiles and beautiful innocence and although we couldn't see her sick heart beating inside her scared chest, we could see it affecting her. She was out of breath and her color was often blue as her oxygen would plummet as she tried to walk or dance or play. The scary part was no one could tell us why this was happening and no one knew if this surgery would help. We knew we had to do something, so after getting second and third opinions from other top surgeons at other hospitals, it was unanimous that this had to be our next step. That night before surgery we didn't get much rest. We had already sent her into open heart surgery 3 times before, but it never gets easier... in fact I dare to say it was harder.

That morning June 5th 2013 We were up early for our check in, we let Ella wear her most comfy PJs even though they didn't match. We checked in and did more of the typical testing, Ella cried. It was scarier that day, I think she knew it was different. We tried to smile and be calming to reassure her, but inside my heart was aching so deeply. I just wanted to run away, It wasn't fair that she was having to do this yet again and as always in the not so back of my mind was the biggest question of all... will she make it? Will I ever see her eyes again? Hear her voice? Did I tell her I love her enough? Will I see her smile again? It's not only death that I feared, it was also all of the complications that can come along with such a high risk surgery that can forever alter who she is. Stroke, brain bleed, damaged vocal chords, infection...etc. With all the thoughts rushing through my heart and mind I watched as the medicine began to kick in and she started to get sleepy and silly. I was thankful for the medicine to help her relax yet it felt like her personality was slipping away and I knew I wouldn't see it again until she recovered... if she recovered. We sign form after form giving our consent for treatment,  and they remind us of the possibility of death but we have to sign it anyway because she needs it. Then when I saw the anesthesiologist and his team I knew the time had come to send her back to the OR. I looked him in the eye and begged him to take good care of my baby. We then had to take the dreaded walk along her bed as she was wheeled to the doors and then we gave our last hugs and kisses before surgery and we put all of our heart in someone else's hands and she disappeared from our sight.

We found a seat and waited for what seemed like forever between those hourly phone updates from the OR nurse. With each good report I felt a sigh of relief yet I still held my breath. Then finally the call that it is finished and that it went well. We got a quick glimpse of her cold, somewhat puffy, face as she passed through on her way to the PCICU. She was sedated and on a ventilator but she was alive.

The surgery was over, but the hard part was far from over. She woke up scared wondering why she couldn't talk. The ventilator going through her vocal chords made it impossible to make any sound. She gaged over the tube down her throat and fought hard to sit up just merely an hour or two after having her sternum cracked open, her heart stopped, cut on and worked on, restarted, and then her sternum tied together with wires and her skin sewn back together. It took 3 or 4 of us to hold her down and try to calm her. She is a fighter. She is strong. Once the ventilator was removed, she looked at me and said "now I can go home" She so desperately wanted to leave. She was begging for water that she couldn't have and it broke my heart to have to tell her "not yet" over and over again. She refused to use a diaper so she stood up and went on a bedside potty chair. She was on Lasix which helps take the fluid off of your body and it makes it very hard to hold it, yet our 2 year old insisted that she would make it to a potty every single time despite the pain and vomiting when she would stand, and make it she did. She blew our expectations out of the water! Jon and I looked at each other across her bed and said "she is doing so good"!  We couldn't believe how well she was handling it all, how well she understood and how determined she was to get up and walk. It was hard, there were lots of tears and refusal of meds, and vomiting and painful dressing changes and those dreaded drain tubes, but through it all she persevered. She was a true hero.

By God's grace 8 days later we were discharged from the hospital and when we got to the Ronald McDonald House, she ran for the very first time. Gosh what a beautiful moment that was! Her heart had held her back in ways we didn't even know. She had never been able to run or jump, but now those things were in her reach. It took several months to "get back to normal", she had nightmares and would wake up scared and crying, there was still lots of vomiting a small appetite, but she did it. God did it. Now as I reflect over these last two years I feel emotional and extreme gratefulness for the mercy of God and for the blessing of these last two years with her. This Friday June 5th will be the 2 year anniversary of Ella's Fontan surgery and we will be in Dallas yet again seeing her cardiologist. Because this journey it isn't over. It's a daily fight. Her half of a heart is beating hard and working twice as hard as a whole heart. We know that our time with her is limited, we know that in an instant we could lose it all, but we also know that we can't live there. We must constantly choose to treasure the here, treasure the now. We pray for many many many years with our baby, but we know that just because she has done so well thus far doesn't mean that her future will be the same. I think it's easy to look at her from the outside and forget all that God has done in her life, forget all the moments we "should" have lost her, all the moments that we have come through, but as her mom, it's always on my mind. Not always to the deepest degree, but there isn't a day that goes by that I don't think about it multiple times a day. It is a part of nearly every decision, every outing, every meal, every get together... everything.       

I just can't believe it's been 2 years since we handed her over. The gratitude that fills my heart exceeds the ability of words to express. So I will continue to hold her close, to constantly shower her with hugs, kisses, and "I love you"s. I will keep feeling her heart beat and always take the time to listen to her breath and I will remember that every moment is a gift. I will never forget and I will do my best to never take her life for granted. I have seen far too many mommies have to say "see ya later", so for them and for me, I choose to cherish Ella's time here on the earth to the deepest of my capability. Each day is one more day together and each day is one day closer to our see ya later. I think it's okay to know that. I thinks it's okay to think about that. I think it drives me to treasure her deeper then I otherwise could. I don't sit around all day crying about it, but I do cry. I don't fill my days with worry and fret, but I do have fear. I refuse to let my sadness and fear steal the moments that I have with her. I speak truth to my heart as best as I can and while the truth is that she is terminally ill the truth is also that Jesus will never leave us or forsake us. When the pain and fear are so much that I feel like I can't do it I sometimes fall apart, but when I am able to refocus again on the here and the now, and My heavenly Fathers comforting arms of peace I can live in the moment again.

Friends there is so much pain and sorrow in this world, but praise the Lord we can have Joy and peace in the midst of the storm. We thank you for continuing to life up our family in prayer, it means so much to us as we face the daily struggles that come along with this journey. We will be heading to Dallas on Friday to meet with Ella's cardiologist to discuss her heart and a few other things. I will try to update when we get back!

Here are some pics of us getting the privilege of living life with our sunshine!

We had a family date night and took Ella to see her first movie in a theater. We saw "Cinderella". Then we took a carriage ride and had dinner!

Ella had her 2nd dance recital and of course LOVES every minute of being on stage!

Then we celebrated Mother's Day 2015!

She loves my new patio swing :)

And she loves her daddy almost as much as he loves her!

Then we took Ella to get a new summer do and she looks adorable!