Wednesday, October 8, 2014

4 years since Ella's second open heart surgery.

* This post was written on Aug. 23rd

4 years ago today we sent our 2 week old baby girl into her second open heart surgery. It was several hours long and when she came back to the room her chest was open and we could see her heart beating inside. One of the hardest things I've ever seen. This night, we almost lost her. The doctors told us "this is very bad". Ella's heart rate was way too high and they couldn't even get her external pace maker to help. They brought in a bypass machine (ECMO) that essentially takes over for your heart so it can rest. Although this is an incredible machine it can do severe damage to your other organs and is used as only a last resort for those who will die without it. Once on ECMO it is hard and risky to ever come off. While we were waiting for the surgeon to arrive and put her on ECMO the doctors gave Ella several doses of a medicine they call poison. It is very bad for you but can save your life in desperate times. They had given her several doses back to back until they maxed out the 24 hour dosage. They called a specialist and asked if they should give her another dose. The specialist told them not to give her anymore or she could die. They told her if we don't she will probably die, they told her that she was going to be put on ECMO as soon as the surgeon could get there if they couldn't get her heart rate to slow down. The specialist said ECMO, as risky as it is would be better then giving her another dose of this medicine. The surgeon said giving on more dose of medicine would be better then ECMO. We were at a crossroads. Our baby lay dying, doctors and nurses packed in the room doing everything they could. We only had two options, one more dose of poison that could very likely kill her, or the ECMO machine that again could likely kill her. The doctors decided to take the risk on the medicine, it was available where as getting her on ECMO would take more time (it is a surgical procedure) we were running out of time. They gave her that last dose of medicine and we all just watched helplessly. The Dr. Came over to us, and told us the situation. He had seen us praying and asked to pray with us because that's is all he could do. The three of us prayed together and when we said amen Ella's numbers began to slowly become more stable, the doctors and nurses were shocked and excited. She was far from out of the woods, but she had avoided ECMO and she was still fighting. We are so very thankful. 

Heading to Dallas soon

We would appreciate your prayers for safe travels and protection from germs as we head to Dallas on Friday for Ella's check up. This is supposed to just be a routine check up, but we do have a few concerns we plan to talk to her cardiologist about so prayers for Him to have wisdom are also appreciated. Overall Ella is doing very well and we are just so thankful for your continued prayers, especially as we head into the flu season and all that comes with trying to keep our girl healthy.

Saturday, August 16, 2014

4 years ago today Ella had her first open heart surgery.


4 years ago today was one of the scariest days of our life, we sent our one week old baby girl into her first open heart surgery. She was so very sick. Fragile. In fact we knew she may not make it out of surgery. God's timing is perfect, because on the way down to the OR, while she was surrounded by nurses and doctors, Ella crashed. They were able to stabilize her enough to try the surgery. Once they got inside, the surgeon realized that her lungs were more damaged then they realized. They were far too weak to support a sick heart. He decided that she would need a heart transplant. Before sewing her up her surgeon had an idea. He decided to try something he had never done before, he did a surgery that would help control the blood flow to her lungs in hopes that they may begin to heal and that possibly she may be able to keep her native heart or at least buy her more time to wait for a new one. We were totally unaware of all the changes that had taken place and we were anxiously awaiting an update call that was an hour over due. When we finally got the call from the nurse in the OR that we had been waiting for, instead of hearing that everything was going as planned, we were told that we needed to go to the consultation room and that the surgeon would be in to talk with us. Ella had only been in the OR for about 3 hours and was supposed to be in there for several more hours. We feared the worst. When he came in he told us about Ella crashing, about her lungs being worse then they thought, and he told us about the experimental surgery he had done on her heart. He told us that we needed to begin the transplant process and prepare to go that route in case this did not work, he then told us that he was concerned that her gut was dying. I asked what that meant for her if her gut died. He said that she would die. Although that day was showered with scary unknowns, I still remember feeling bits of Peace and Joy throughout the day because of God's mercy and the thousands of prayers sent on our behalf by you all and so many strangers around the world. Today my big 4 year old is painting at the breakfast table. We believe in miracles, and we have one to celebrate everyday! I thank The Lord for His Mercy in saving our sweet Ella Dawn, in giving us 4+ years already with her. What a beautiful gift! 

Ella had a wonderful birthday and we are all on the mend from that pesky summer cold, thank you for the prayers! 
These are our traditional last day before her birthday pics. 

8-9-10 our Birthday girl!

8-9-14 our Birthday girl! How far she has come! 

This last week Ella started dance class again! She is excited! She looks so grown up! 

Tuesday, August 5, 2014

Quick update and prayer request!

Ella's 4th birthday is this Saturday and we are SO excited! Ella has been counting down the days for the last month and we have a big cake coming through the icing smiles organization again this year, plans for a party... only one problem, we are all sick :(
 Somehow we caught a summer cold the beginning of last week and we are all still a little stuffy. :( Ella is handling it like a champ and her symptoms are not too bad, some coughing and a little bit of a runny nose. Jon also has pretty mild symptoms, it has actually hit me the hardest. I have a pretty bad cough and things seemed to have settled themselves in my lungs. All in all the most important thing is that Ella's body seems to be fighting this well! We would just be so thankful if you would lift us up in prayer for healing from this cold. We want so badly to celebrate Ella's birthday with friends and family, but we will celebrate big even if it's just us 3! It would just be icing on the cake if we could feel well at her celebration! Thank you all for being so faithful to pray for our family! Here are a few recent pics of our sunshine!

Tuesday, July 8, 2014

A little catching up and a prayer request.

I'm so sorry I have not been as consistent in my updates lately. Our computer has not been working well and that makes it difficult to post updates and pictures.

Ella is doing well, we are in awe of her strength and the quality of life she is having despite her heart. Jon and I are enjoying this phase of life with her as we know it will most likely be "the best years of her life". We know things can go down hill quickly when her heart or other organs start to wear out. Ella will be 4 in a month and I can't believe just how fast it's going by! Just this last month I got news of a 20 year old girl with HLHS who had passed away suddenly. It hit me hard. Ella was napping when I saw the news and so I was able to cry about all that we are facing, to pray for this girl's family, to have a talk with God about my fears, about the pain of the reality of the death of my little girl in my face all the time. Those break downs aren't as often as they used to be, but when they come, they hurt so bad. I had to go into her room and snuggle her while she slept just to feel her breathing. It's so scary.

This summer has been pretty mild temperature wise for us and for that I'm thankful. Ella doesn't do great in the heat, so with the milder temps she has been able to get out a little more. She got to go to her first ball game! Some of her little friends from our small group are on a tee ball team and she got to go watch one of their games! She also got to swim in a big in ground pool for the first time at a Sunday school cookout! She is getting more and more opportunities to play with other kids if they are healthy and even had a play date here with one of her little heart friends and her friend's little sister! She got to go to her first wedding and now keeps asking if she can get married to daddy, kiss him on the lips and get pink flowers! She also got to ride in a basket at target for the first time (oh the germs, ewww! But we did wipe it down with antibacterial wipe first)! I never tire of seeing her do these new things! Each time we get to see her do something new I just feel an overwhelming thankfulness that she is here with us, still fighting, still thriving, still smiling! This last Sunday, we had a great time as a family playing on her fun blow up slide/pool and as Jon was throwing her up the bouncy slide and she was laughing with a huge smile saying "Again! Again!" My eyes welled up with tears of pure thankfulness. Humbled by the Lord's protection over her and the blessing of her life. Just seeing her SO happy, there are no words. Thinking back to the beginning, those early days of wandering if I'd even ever get to see her open her eyes so I could tell her that I loved her. Now she tells me that she "loves me MOST" and that "You'll be in my heart mom" a million times a day and I get to tell her two million times a day how much she means to me... but I still can't seem to even scratch the surface about how I really feel about her. Words aren't enough.

Over the 4th we went out to eat and then to my parent's house for a little fun. It always causes some anxiety on my part to bring her out in public, but she loves it and that gives me the strength to keep going. She has fought every bit as hard as we have and then some and she has a light to bring to this world full of pain and hurting people. She smiles and talks to anyone that will listen and watching her see new things for the first time is indescribable! Her eyes light up and she points to everything exclaiming "wow, cool, fun, beautiful, oh my gosh, I love it!" She has a zeal for life that is intoxicating. Just being around her is enough to make anything seem just a little bit brighter.
While we were out at my parents Ella got to do her first sparkler she touched the end after the flame went out and it was still hot so she got a tiny blister on her thumb :( she also got stung by something (we think) on the back of her leg but no tears or even an "ouch" came from her, just a pause and an "it itches" as she rubbed it a little. She is so tough! After that we headed back to our little town to watch the firework show! We actually watched two big shows this year, one a few days before the 4th and one on the 4th! 

Last night Jon took Ella on a little date, they do that from time to time and Ella LOVES it! I mean she gets SO excited!! It's always hard for me to see them go, the house is far too quiet when she's not here, but knowing what a treasure that time is to both of them is enough to get me through the silence. Jon may love it even more then Ella if that's possible, it is so adorable how much they love each other! They came back with a toy of course ;) When she came home I noticed that she was a little more out of breath then I like and was a little dusky in her color. She has been dusky off and on here lately, but I finally decided to check her oxygen level and heart rate. The oxygen was a little low and heart rate was pretty high. This morning I saw the same symptoms so I checked her again and again her heart rate was too high and her oxygen was even lower then last night. I called her cardiologist's office and let them know about the situation. We have also seen a few small things that can be a concern that her liver may be having some problems (that has not even been discussed with her doctor yet, just something we are keeping an eye on, hopefully it is nothing.) So we are a little nervous about those things. We would appreciate your prayers for her doctors and for us as we try to discern what is going on and also for her to be back to a safe a steady baseline soon! Thank you all for continuing to pray for our family!

Wednesday, June 18, 2014

Mother's Day/Father's day 2014

Mother's Day 2014

Father's Day 2014

What an honor it is to be her mommy and her daddy!!!! 

Wednesday, June 4, 2014

1 year post Fontan!!!

1 year ago today we left our home to head to Dallas. We were to have pre op as soon as we arrived. The next day we would be sending our 2 year old in for her 4th open heart surgery. The emotions I am feeling as I reflect on the events that occurred that June day a year ago are mixed. I'm overwhelmed with thankfulness that Ella is here today and that she continues to blow her cardiologist away with how well she is doing, but I'm sad to think about all the pain she went through. It was a traumatic experience and so it's hard to relive, yet it is rewarding to think through the miracles that occurred. As we looked back at some of the pics this evening with Ella, she told us all the things that happened, she talked about her ouchies and the Ronald McDonald house, she talked about her red wagon rides the walking and watching Cinderella, " I was so brave", yes Ella, you were SO brave sweet baby! It's crazy that was a year ago, it seems so close and I guess it also feels somehow like another life altogether.

The Fontan was Ella's last scheduled surgery. Her future is now a mystery. We know she will need further surgeries eventually or possibly a transplant someday, but we don't know when or what. I couldn't wait for the burden to be lifted of not having anymore planned surgeries hanging over our heads! It was a relief for sure, but not knowing what's next is a burden too. Just one of those things I have to only allow myself to think about and not dwell on. I think about Ella's special heart probably over 100 times a day. That may sound obsessive, but I don't think so. It's just my new life. You see everything about my life changed when we heard those doctors words before he offered us an abortion. I knew then what I know now, Ella is special. Ella is a fighter, and she is proof that miracles still happen and that God is bigger then an 80% chance of death. God is bigger then her crashing twice. God is bigger then 4 open heart surgeries. God is bigger then the unknown. For as long as God grants us with our daughter and as long as she fights we are going to be fighting with her. 

It is such a big milestone to be celebrating being 1 year post Fontan. Preparing for this surgery was one of the hardest. Ella was such an established part of our lives and my companion day in and day out. Every moment with her was cherished and thinking about taking her to a place full of strangers holding her down while they had to hurt her, seeing her on a ventilator again, knowing they would stop her heart from beating and attempt to restart it hoping her body would accept the changes of her blood flow... all of would just take my breath away. I remember it was pretty cloudy that day, June 5th 2013, and as we set in the waiting room anxiously waiting for our hourly updates, every once in awhile the sun would come out from behind a cloud a shine so bright it would light up the room, I'd say "there's our sunshine letting us know she's okay" :) while I know she doesn't control the sun I do know the one who does and those peeks of the sun gave my heart a little joy on that hard day. 

When Ella woke up she was fighting to sit up. She was still on the ventilator and it took four adults to hold her down just about an hour or two after open heart surgery. They tell us the fighters often do well, that was our girl! She wanted to walk, she wanted to go home,  she wanted a potty because she was a big girl and big girls don't use diapers, she wanted water and cheese, she has pushed the expectations from the time she was born. Day two of recovery from her Fontan and she walked over 450 ft. Straight. Her strength and resilience is amazing and is no doubt a result of the thousands of prayers being said on her behalf. We thank you! 

The day we were released to go back to the Ronald McDonald house to wait for her follow up appt. she ran for the first time in her life. I cried then and I can't help but cry now as I think back to my 8 day post op little 2 year old sunshine running down the hall. She wasn't out of breath. It had been so long since she could even walk a short distance without dropping her oxygen into the 50s or lower, she was blue and couldn't catch her breath. Seeing that change immediately we knew we made the right decision. This surgery will drastically impact her other organs negatively, especially her liver, but life is about quality over quantity with her. While I want her forever, I would rather her have a shorter full life then a (possibly) longer life with major limitations from her own body. She still has and always will have limitations, but seeing her energy level raise SO much was amazing! 

Today when you look at her you would never know. She may not run fast and she may struggle to jump, but she is improving everyday and she blows me away! These are just a few of her accomplishments- She can count to 100, she knows her alphabet in English, Greek, and American sign language, she knows basic addition and subtraction, she knows Every letter and the sound it makes, she is learning to sound out words, she can write her name and a few other small words with some direction, she sings, she just finished her first group event ever with her semester of dance class (and was a Rock star on stage with NO stage fright), she is learning and growing before my very eyes and it is such a privilege to be her mommy! When God made Ella he made a beautiful inspirational story. I consider it an honor to share it with all of you! 

Isn't God so good? I know that God could have taken her and still He would be sovereign and in control, but for whatever reason He has thus far spared Ella's life and we are so humbled He gave her to us. I pray that you always see His fingerprints all over our lives as we strive to point to Him as we live this crazy up and down adventure called life. So as this day comes to a close I think back to 1 year ago today, I was laying my baby down to bed in the Ronald McDonald house and praying to God that it wouldn't be the last time I would get to tuck her in. Praying that she would fight. Praying that once again He would hold her in His hands while her surgeon worked on her tiny lifeless heart. Praying that she would understand that we loved her and hadn't betrayed her. Begging for His strength and peace. Tonight, 1 year later I get to tuck that sweet sunshine in bed and tomorrow we are going to celebrate! Celebrate life, celebrate God's mercy, celebrate miracles! 

                  {Running for the first time}