~ Dec. 8th 2009 found out we were expecting our first baby, we were about 3 1/2 weeks along.
~ Dec. 18th blood work at the doctor confirmed pregnancy
~Dec. 19th I began to cramp bleed and pass several clots this lasted 4 days. It was a weekend so I had to wait until Monday to be seen. The on call doctor told us that it sounded as if I was miscarrying.
~ Dec. 21st we went in for an ultrasound and blood work. I was 5 1/2 weeks. They told us not to be alarmed if they couldn't find the heartbeat, it wouldn't necessarily mean I had lost the baby. They told us it was very early to find the heartbeat and that they don't usually find it until 6 weeks. Unable to find the heart beat, they suggested that we do an internal ultrasound or wait another week. We did the internal ultrasound and miraculously they found the heart beat!
~We found out that my hormones weren't doubling properly.
~ Dec. 26th I was admitted to the hospital for sever dehydration due to vomiting.
~Dec. 29th I was sent home.
~Dec. 31st we rang in the new year in the ER again severely dehydrated.
~Jan.2010 We went to stay with my parents (God send) so that Jon could work and my mom could help care for me.
~ Jan.6th at 8 weeks pregnant Admitted into the hospital for severe weight loss, dehydration, and hourly vomiting. The doctor was worried that we may have lost the baby due to malnutrition. Ultrasound showed healthy baby despite the odds.
~ I had to have a PICC line (feeding tube) multiple I.V.s and blood work. Hormone levels started to double properly! Blood sugar crashed despite extra sugar in my TPN.
~ Jan. 27th made it through the first trimester, and after an ultrasound that showed healthy baby I was discharged. Went back to my parents house.
~ March 26 we were finally able to go home.
~April 10th we found out we were having our sweet baby GIRL and that she was a healthy baby!
~April 11th I got a call saying they though their might be a problem with her heart and that I needed to see a perinatal specialist. We had to wait 10 days.
~April 16th we were told our daughter had hypoplastic left heart syndrome. We were told she had a 75% chance to live, she would have to have at least 3 open heart surgeries in the first 3 years of life. We were given the "option" to "terminate" the pregnancy, that was NEVER an option for us.
~May 12th we had another ultrasound, we were told that Ella had an additional heart defect called a intact/restricted atrial septum. We were told we would have to leave our home state to deliver, that we may have to move all together depending on how she did. We were told she had only a 20% chance to survive.
~June 21st another ultrasound shows baby growing bigger and more beautiful then ever.
~ Decided that Dallas Childrens Medical Center was the place for Ella's care. Made the 7hour round trip to meet all the doctors and surgeons. We heard over and over that Ella had a very real chance of not making it. Three hospitals were all buzzing with the news of our daughters arrival.
~July 27th we packed our bags and moved into our home away from home at the Ronald McDonald House of Dallas ( Truly a blessing!!)
~ Days filled with doctor appointments
~Aug. 9th at 39 weeks pregnant We went in for the c-section (had to be c-section for Ella's heart) 3 surgical teams stood by, observation room full of students watching this "rare birth". Ella was born at 3:23pm. We got to quickly touch her hands, and she was off. They immediately put her on a ventilator and rushed her to the operating room.
~ First surgery was a cath surgery, it lasted 7 hours.
~ Aug. 10th I was wheeled to Ella's room to meet my baby girl for the first time.
~Aug.11th I got to hold my baby for the first time.
~Aug. 12th Daddy got to hold Ella for the first time.
~Aug. 16th Ella had her first open heart surgery. It did not go as planned and they ended up making the decision to do an experimental surgery that they had never done before.
~Aug 23rd Ella had her second open heart surgery. That night she crashed and nearly died. The doctors told us it was not good and he prayed with us. Immediately she began to make small improvements.
~Ella had several ups and downs, she had potassium pushed into the line straight into her heart by mistake, she survived. She took her first bottle, she was weaned off of the ventilator and oxygen.
~Aug 30th we moved out of the CICU
~Sept. 9th we left the hospital for the first time Ella was 30days old we went back the the Ronald McDonald House.
~Sept 13th we took our baby girl home for the first time.
~Nov. 17th Ella needed an emergency cath surgery in Dallas.
~Nov. 23rd we got to take Ella home again!
~Jan. 13th Ella had her 3rd open heart surgery.
~Jan. 22nd We took Ella home.
~Jan. 23rd Ella's sats dropped down to 51, we soon found our that her diaphragm had been paralyzed during the surgery she was placed on oxygen.
~Mar. 23rd Doctor told us that Ella's diaphragm had been healed without the need for additional surgery.
~ Ella continued to thrive and meet all her development milestones despite the hurdles!
~ Aug. 9th we celebrated Ella's 1st birthday.
Currently we are awaiting Ella's 4th and hopefully final open heart surgery.
Life for us has been different then we could have ever possibly imagined, in so many ways we have hurt. Our hearts have broken over and over again on this road. However just as many times as we have cried tears of sadness, we have cried tears of joy! We laugh more, smile more, and love more then we ever knew possible! Being parents of a special needs child reminds us daily that life is fragile, that it should not be taken for granted, and that at any moment it could end. It's a balancing act to live in our circumstances and be aware of reality but not live in constant fear. It isn't something that I can just pretend isn't real... it is something that makes nearly every aspect of our lives a little bit different then most. Yes, I cry... a lot. I fear... a lot. I PRAY... a WHOLE lot. But I love my life so very much! Truly this has been the most amazing journey for so many reasons. I have truly seen miracles as Ella's life has been miraculously saved multiple times. I have had many "only God" moments where I would need or pray something specific that God would give me an immediate clear answer, as if He was reminding me that He was in fact hearing my prayers and that I hadn't been forgotten. He once spoke a verse to my sweet friend Julie who then, not knowing that God had showed me that very verse in a desperate time, prayed it over us during a special moment where our Sunday school gathered around us to pray. Truly "only God", moment's like that are the ones that keep me going, that give me hope for the future. Honestly being Ella's parents and not being able to "fix" her, or take the pain for her, is excruciating! However, knowing that the only One who loves her more then we do is in complete control of her life certainly helps. Truly I have no idea how anyone could go through something so terrifying without God! Sometimes trusting that God loves me just as much as He loves Ella is a little harder to grasp... just because let's be honest, she is a whole lot more lovable than me :) But I know He loves me and cares for me, and that He will meet all my needs. Not a day goes by that I don't think about losing Ella. Not a single day. Some may say that is living in fear or just being negative, I say it's reality. I don't dwell on it or get depressed over it. I smile that she is here with us now, I smile that she isn't in the hospital, I smile that she is healthy. I pray and thank God for my baby's life, and sometimes I just look at her and cry. But over all I remind myself that if someday I lose her, God will walk with me. Does that make my heart okay... NO! Does this mean that I'm at perfect peace in my soul... NO! I can't hardly breath thinking about such a horrible thing, but I know, that's okay to have those feelings (Thank you Jamy). I know that God will give me the grace to walk whatever path he has for me when He has it for me. Just like when I found out about Ella's heart. Had you told me 4 years ago that I would get pregnant and experience all that we did in the above list... I would have said my heart couldn't have done it. But look where we are now. Living everyday moment by moment, not perfect by any means, but certainly ONLY by God's grace. May you find peace in knowing God is in control and strength by His grace this coming new year!
Merry Christmas from our family to yours!
Day we found out we were expecting.
Day Ella was born.
First time we got to hold Ella.
night before first open heart surgery.
post first open heart surgery.
post 2nd open heart surgery.
leaving the CICU.
HOME.
post 3rd open heart surgery.
Ella now! :)
