Sunday, October 14, 2012

Update post cath!

First off I want to apologize for just getting here to update all of you, Ella's blog is having a few technical problems and I have been trying to get it fixed. The counter on our homepage has shown that Ella's page has had well over 411,000 views! Somehow it automatically started over and now shows 20 something views. Anyway I can't seem to figure it out so if you have any tips feel free to comment and let me know ;) Also today is a very special day, it's Ella's Daddy's Birthday!! So we have been celebrating him today which is much deserved since he takes such good care of us all the time! So feel free to wish him a happy birthday too ;) Also check out the latest video of Ella singing She says "sing sing sing and make music with the heavens we will sing sing sing, grateful that you hear us when we shout Your praise lift high the name of Jesus!"

Now on to the update...

 Ella is doing great! Thank you all so much for the prayers! We are home from Dallas and Ella is recovering very well. She doesn't seem to be in any pain at all and is for the most part her normal perfect self :).

Ella's cath went great, we got to the hospital at 6:15am on Friday and got Ella admitted. She wasn't thrilled about the check in, but she loves the big train set in the lobby :) We were so thankful to have my parents there to help keep her occupied during the pre op wait. She was really good, but it was so nice to have their help. The nurse gave her some "goofy juice" to help her get sleepy and not care about what all was happening. It was sad and cute at the same time to watch her that way. She got very sleepy, laid down and said "shhhh" with her finger up over her lips. She never relaxed fully, she still kept trying to sit up and she said "all done" and "no" while we wheeled her to the surgery area. She didn't really cry though and I am so glad, my heart was breaking already. Somehow watching someone else pick up my baby girl (Who has only ever been touched be a small handful of people in her whole life) and carry her into a room where I couldn't see her or help her made my mommy heart ache. I cried harder then I cried before her last open heart surgery when they disappeared through the dreaded double doors even though the risk was far less. Life with Ella is so wonderful that even to imagine living it without her is unbearable.

collateral before plug
 Collateral after plug! Amazing!
Ella had one entry point in her right groin and one on her left side upper chest. They found one large collateral that somehow they missed via echo (probably because Ella wasn't all that cooperative during the echo). Anyway, they were going to coil it but ended up plugging it because her surgeon didn't have the size of coil he wanted (her surgeon is AMAZING). We were happy that there were only a few small AVMs (atrialvenous malformations) and that they weren't a problem. We are hopeful that plugging this collateral will fix Ella's oxygen problems and hold off her next open heart surgery for the next few years.

After the cath was finished the anesthesiologist gave her some medicine that was supposed to help her be drowsy for the next few hours and they told us we would be with her when she woke up so she wouldn't be scared. The medicine didn't work and she woke up in recovery before they would let us go back, that was hard for me to know she woke up without us, but she was well taken care of. She was not happy when she woke up at all. She had to lay flat and keep her right leg straight for the next 4 hours. Some juice, water, and 4 or 5 popcicals, Tomas the train, veggie tales, and daddy, mommy, nana, and grandaddy and somehow we made it! right about 4 hours out she insisted that she needed to go potty and would not go in her pull up so they let her get up and go... their was no stopping her after that hahaha. She constantly wanted to "walk" She walked up and down the halls until she kept desatting and her heart rate was 193, the nurse made her get back in bed. It was good to see her up and moving around even if she did look like a little rug rat with messy hair, purple popsicle all over her face and wearing only her pull up and tennis shoes. Hahaha they kept letting us know we could get her dressed, but we didn't have her clothes from the Ronald McDonald House yet.

The whole stay was hard for Ella, but I just can't say enough good about Dallas CMC. We are so happy we decided to take her there for all of her cardiology care. They are kind, helpful, and very good at what they do. We are SO thankful for the way the staff treated our girl!

Currently Ella's sats are still the same as they were before her cath, and she is still desatting with activity and her heart rate gets elevated quickly. We are hoping that with time that will improve!

Please be praying that her surgery sites heal well and she stays infection free and also that her sats come up soon!

Fun fact - Remember when Ella was 1 week old and they did that experimental surgery where they placed the bands on her pulmonary arteries to give her lungs time to get stronger since they were so damaged from her intact atrial septum and they couldn't do her planned norwood until they got better so they thought they were going to have to do a transplant? Well she was the first one they had ever tried that on and since then they have done that on EVERY baby after her that have had that same problem! They actually do the band surgery as routine now before doing the norwood! How neat is that!? We kinda think they should call it the Ella ;) But I guess in all fairness it should be called the "Forbess" since that is her surgeon's name who came up with trying it on her. Her cath surgion, Dr. Nugent, said that Ella is a super star and we couldn't agree more!! We are humbled that God has blessed her journey so much. We got the report on Friday that Ella's lungs have made a FULL recovery from the damage while I was pregnant! That is incredible, God is SO good and we are SO thankful!

Leaving the Ronald McDonald House to go to the hospital

 Checking in at the hospital

 Waiting in pre op

 The nurse carrying her to surgery

 Post op recovery watching movies 

 and eating Popsicle's 

In our room playing with Nana and Grandaddy

Walking the halls

 Cuddles before bed

 leaving the hospital (yes she was still in her PJs) 

Ella fell asleep on the way back to Oklahoma and kept smiling in her sleep, she was happy to go home! 


  1. Very happy to hear the surgery went well and it sounds like the experience was a little less scary for her than expected.

  2. I have been following your beautiful family for a while now and this is the first time I have posted a comment.
    I just wanted to say that I am so happy for you all that your sweet girl is doing so well and that she handled her surgery beautifully.
    I am not really a religious person but I do feel in my heart that everything happens as it should and that we should all have whatever it is that we believe in.
    Anyways, just wanted to say that I am so happy for you guys and love following your wonderful journey.
    PS: LOVE Ella's cape. :)

  3. I also have been following your blog and never ususally comment ... I have been praying for Ellla and family. So glad that she is doing good and that everything went well. I looked at the picture of Ella being carried away by the nurse [which brought tears to my eyes , so I can only imagine what you went through :( ]and I thought of the song "He will carry you through" and He did, God brought her through it ..... continuing to pray as she heals. God bless you and your family... You all are a wonderful light for others, truly a blessing.

  4. Absolutely precious video's and pics. So thankful that everything worked out so wonderful for her. You all are so wonderful. She is a very lucky young lady to have a momma and daddy like you. She is sooooooooooo smart!!! She says just anything. I know you cherish every minute with her and life is wonderful. I continue to pray for your precious little gift. Thank you so much for the updates.

  5. Happy birthday, Jon. I hope you enjoy your day. A fun day is much deserved. I'm very happy to hear how well Ella's doing. My heart would have broken in a million pieces seeing her carried into surgery. We have to do what's best, though.

  6. Amy & Jon - I want you to know that I have followed this blog since Ella was born. I pray for your family daily. At the company I work for, we have a Give campaingn that allows us to donate a portion of our paychecks to a selected organization and our company will match our donation. This year I chose to donate to CMC - because of all the wonderful care your family has received there. Know that you have been an inspiration to my life. May God bless you every day.
    - Susan Wallace


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