Thursday, December 15, 2011

Dates in Ella's journey

It's been awhile since I started this blog and we have had so many new visitors! As of Dec. 8th, it has been 2 years since we found out we were expecting, so I decided to take this chance to review Ella's journey so far!

~ 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.
 post 3rd open heart surgery.
Ella now! :)

Saturday, December 10, 2011

Ella is OFFICIALLY walking for good!

So as of Dec. 6, just three days before turning 16 months, it is official that Ella is walking!! I love it! She is walking better then she was in this video already! She is walking all the way across the room turning and walking some more!! Can't believe it! It only took 4 months from her first step to taking off! hahaha. Enjoy!

Tuesday, December 6, 2011

Christmas Tradition!

So last night we took our second annual trip to drive through a Christmas light display! We bundled up and headed out in our toasty car with Christmas music playing and big grins on our faces! Another year, another Christmas, another open heart surgery complete, another day together! My heart was bursting with Joy and thanksgiving! I couldn't help but say a prayer of thanks to the One who gave us our miracle! I don't update too often anymore and I'm sorry about that, but the good thing is that when there is no update things are usually going well! Life is in full swing, we are decorating the house, planning Christmas dinner, buying and wrapping Christmas gifts! Of course Ella is learning and growing faster then I knew possible!!! She is singing and and learning new words everyday! She says nearly anything I ask her too, she has been taking steps since the day after her 1st birthday and now nearly 4 months later she is still not "walking"! about 2 weeks ago she took 5 steps all by her self and even several more a few times after that, we just new she would take off in a few days, I even announced on Facebook that she was "walking!" ha. She made a liar out of me! However now she will stand up in the middle of the room all by herself, then look around and say "walk" then she will say "down" and sit back down, then I hear "up" and she stands back up, then "down" and she squats back down! lol up and down, up and down, but no walking... until yesterday! Twice she stood up completely unprompted and unassisted and said "walk" I said "come on Ella walk to mommy!" and she took a step, so maybe just maybe we are almost there! We've been thinking she would take off any minute for the last 4 months, so I guess she just wants to do it on her time! ;) That's my girl! Anyway I really don't mind, I mean I want her to walk and since it seems to be taking longer then I expected, I occasionally get a little discouraged that maybe I'm not doing a good job with her, but then I remember ALL that she has been through, and how AMAZING she is doing and just how FAR she has come!!!! Add that to the crazy emotions of "my baby is not a baby anymore" that I had when she walked for the first time, and I am content to see her crawl just a little while longer. :) That's part of the bitter sweet feelings I have at every new milestone that Ella meets, I have this overwhelming sense of pride at her accomplishment and all she has been able to overcome, and instant sadness that my only baby is growing up! Ella had a cardiology appt. the other day, and her heart is looking great! Her sats are staying right around 83%, our main concern right now is her CRAZY high blood pressure (160 over 99)! Her cardiologist isn't concerned, and just wrote it off as severe anxiety. I know she has bad anxiety at the doctor, but I'm not sure why it's just now affecting her blood pressure, when she has ALWAYS had a hard time at the doctor. He did raise her blood pressure medication, but still said we won't see him until March unless we have a concern between now and then. We'll see. We are into the dreaded flu season where we have to WASH and STERILIZE everything! We do not have visitors (even though they were MAJORLY limited before anyway), we stay as secluded as possible!  Of course their are some who may think it's overboard... they (usually) don't have a child's life on the line. I have learned that as a parent, especially of a special needs child that some people are just plain ignorant. They say things and give "advice" that is just a lack of discernment and knowledge. It's hard not to take some comments personal, but it is very important to be able to let those comments roll off our back and realize the God chose us to be Ella's parents for a reason! We know her better then anyone, we know her heart, her limits, our life. We also know we will make mistakes, and we won't always make the best judgments. So with humble hearts we ask God for wisdom every night together as we make life changing and possibly life saving decisions for our sweet sunshine! We have had our flu shots, but since we may be looking at her next open heart surgery possibly as early as this summer, it's very important to keep her healthy. Because Ella's heart condition makes her oxygen level lower then ours, it is really hard on her when she gets sick, because even the smallest sickness or infection puts her at high risk for complications and possible hospitalization. As Ella's next surgery approaches her oxygen level will continue to slowly drop and as this happens sickness will be much harder on her. We know this is just a season. We will continue worshiping with our Church via the live feed online (we are so VERY thankful for technology!) Here's where we need YOUR HELP (if you're local)! We still have to go to the store and run necessary errands, so for the safety of Ella, if you see us, we need you to not come too close to us, even if you have the sniffles, you are a risk to our family. ALWAYS skip the hugs. ;) Just being aware is a great start!  We covet your prayers for our family as we continue on this journey. We hope that by next winter, or the one after that, Ella will be strong enough to be around all the people we love more often!  :) 

Chilling watching some T.V. 

Mommy caught you :)

Ready to go look at Christmas lights!

 Don't forget the adorable hat! 

One VERY blessed family!

 Ella's got the wheel! (no worries we are going about 2mph.)

 Back in her seat safe and sound ready for the drive home!