Emmy's Surgery

Back in June of 2020 Emerson had hand surgery. During that time I wanted to share the journey on social media to hopefully help other parents going through, or who would one day go through, something similar. The memories popped up on Facebook this week (because that's how the meta verse works) and I wanted to turn them into a blog post because I thought it would be a nice way to capture it and be able to share that story forever.

So, here is the journey of Emmy's surgery...

*the following was originally posted on June 9, 2020

My daughters life has changed forever... but she doesn’t even know it. Emerson had surgery on Monday June 8th at 7:39am to reconstruct her right hand with the intent to give her more functionality and a greater advantage in movement. If you’re new to all of this, let me help try and explain it as quickly and efficiently as possible.

She was born with what has been diagnosed as upper limb ulnar longitudinal deficiency with syndactyly... meaning she has only one bone in her right forearm with only a partially formed hand. What it means when you look at her is that her right arm is a little skinnier, a little shorter and her fingers are joined together. But honestly, you wouldn’t hardly even notice any of this if you just passed her while in a store, because you’d be so captivated by her big bright eyes that her arm wouldn’t even register.

Monday was the hardest day I’ve ever experienced as a mother. It was a day that I knew was coming for so long. And when it arrived it was eerily similar to the day that I gave birth to her. It was a planned c-section because she had been transverse/breach for months (later we learned it was because she had the cord wrapped around her neck 4 times! ...but I digress) When I walked into the hospital on the day Emmy was born I was so excited and so anxious but knew deep down in my soul that it was going to all be okay and it was going to be a life changing day.

That was the exact same feeling that I had as I held my daughter, in my arms this time, as we entered the hospital doors. I was anxious and excited going into another life changing day. I knew that my job that day was the same as it was 19 months ago in October. I needed to be calm and loving and be the rock my daughter needed. My energy was going to shape a lot of how she reacted to things she faced on this important day.

Through the rest of the week I’m going to share my experience of this big day with you all. I hope you enjoy following along!

*Originally posted on June 10, 2020

Day 2 post... Going into the hospital and what happened before surgery ———————————

It’s not easy to, willingly, let a stranger hold your daughter and take her away.

But that’s what I did. I handed my daughter over to a complete stranger so that she could be put under anesthesia and be operated on.

I truly think that was the hardest moment of my life.

Now, did I trust this stranger? Absolutely. From the very first hello at the check in area at the hospital I was met with the warmest hellos and kindest smiles possible.

Emerson was even given a bag from Project Sunshine that contained a hand puppet that we could color and customize any way she liked. Markers, foam stickers, pages to draw on and a few more things. It was so sweet and such a nice surprise, especially because I only brought her blanket and her Minnie Mouse doll to keep her occupied. She loved it!

Every nurse, doctor and team member that came over not only introduced themselves to me but also to Emerson. They treated her as a patient that was just as involved and aware as any other patient.

They made sure that not only was everything explained well but also that I was confident in what I had heard and that I didn’t have even the smallest question or concern. They made me feel so calm and part of everything instead of just acting superior and above me. They didn’t speak down to either one of us, which I didn’t even realize until I was in the waiting phase of everything thinking through what had just happened.

They let me give her the first dose of medicine that helped calm her and make her a little drowsy so that it was easier for her when they went into the operating room. It also helped her to not remember most of it once it was all over with. It was just like when we take Tylenol at home... she was a total champ! Everyone was very impressed.

She wanted to snuggle and no one ever told us no. They just let me and her do whatever we needed to help keep us calm and happy.

The final talk with her surgeon before anything began was the final thing that truly put me at ease. He walked me through his exact plan for the last time. He even drew on her hand to show me precisely where he planned to make his incisions to create the new spacing. That way we both knew exactly what to expect and what the goal was. It really put me at ease knowing how mapped out it all was.

But then it came. The time that I had to give her over. The operating room was ready and so was her team. So I hugged her tight and kissed her as much as I could without embarrassing all of us and I gave her to the nurse. His name was Daniel. He was so sweet. And she went right to him, which made me feel better. I also appreciated that they held her and didn’t roll her in on a big scary bed. That she was comforted and cared for as if it were us holding her.

I cried when they left. I cried so much. And the people at the desk just let me. They didn’t rush me out or try to make me pull it together, they just let me have my moment. And then I said a prayer, wiped my face and went to wait.

Because that was the only thing that I could do. Wait.

*Originally posted on June 12, 2020

Part 3 of my journey through Emerson’s surgery Monday ————————————— When waiting is all there is to do... you can go a little crazy. Especially when what you’re waiting for is your whole world, lying on a table, helpless and without the ones who love her most. Normally at any other time in history (almost) Danny and I would have been with her in the pre-op area. We would both be allowed to wait, most likely pacing, in the waiting area until a nurse or staff member came out to us explaining how the surgery went. And then we would wait to be brought back to help her wake up with us both by her side. But not now. Not during a pandemic. We were forced to wait outside the hospital. Where we felt so far away from our baby. So far from anyone knowing where we were. Or how to find us if something happened. So far from her cries. It was so awful and isolating. But what made it bearable was each other. We had each other to lean on, to cry with, to understand how the other was feeling. We were not alone. We were the only two people who truly understood what it meant to be walking around the pathways of that facility without any idea of what was happening in the buildings we walked around. We didn’t have any family around, we didn’t have a support system with us (in person), we simply had each other. What was so strange about that time outside the hospital was that even through all of our discussions and questions, at the end of all our concerns was just trust. We trusted Emerson’s doctor. We trusted the decisions we had agonized over. We trusted that what was being done was truly going to help change and shape her life for good. That all of the prayers and love and positive energy that was being sent our way was being felt by everyone involved and that it was all going to be okay. When I couldn’t walk any more and the time had just become too much to bear (almost an hour over the expected surgery time) we finally got the call. The surgery was over and her doctor was so excited to find us to tell us just how great it all went. He called and found us outside the hospital. He was so confident and proud of how it all went. He shared with us pictures of what he had done. He answered all of our questions. He made us feel optimistic about Emerson’s future. The relief and comfort that I felt at that point was indescribable. My baby was okay. She was safe. She was going to be back in my arms soon. We were so grateful. It couldn’t have gone any better we were told. It was everything that we were praying it would be.

*Original post from June 14, 2020

Here’s the conclusion to my experience from Emerson’s surgery day. Thank you to everyone for the love and support. It’s really been so wonderful and helpful. I can’t tell you just how much it’s meant ———————————-

Recovery looks different for everyone... but I’ve never known resilience like this before. I knew not to be frightened or nervous if Emmy woke out of anesthesia a little hysterical. So when she woke crying and then had bits of a fit here and there, and couldn’t calm all the way, I wasn’t too worried. I knew it would pass, but it still didn’t make it easy on my heart to know what she was experiencing or that I couldn’t do anything to stop it. Just hold her and talk to her calmly and try to love on her as much as possible. Though once she calmed down and was seen by her doctor one more time, we were discharged and able to take her home to recover and be more comfortable. It still blows me away that her surgery was outpatient and that they sent us home that day! What’s more, just after surgery she was eating and drinking in the recovery area. Then once we got home she wouldn’t STOP eating! We just snuggled on the couch and watched Mickey Mouse (her favorite) and had whatever she wanted in the way of snacks and food. By late afternoon she wanted to be playing and blowing bubbles like nothing had happened! And except for her walking like a drunk sorority girl, she was perfectly normal. I could hardly believe it! She did a good job not trying to pick at or take off her bandages. Especially once Daddy got the brilliant idea that Mickey needed to have his hand wrapped just like hers. In fact BOTH Mickeys needed to have their hands wrapped. It made her so happy. She still gets excited when she realizes that she and Mickey are twins. We go back in a few days to have our first post-op appointment. I think we are a little anxious to see just how she is healing and what her doctors thoughts are. She has always been a warrior, there is absolutely no question there. But I’m realizing now just how much my baby girl is going to teach me. So much more than I ever even considered. So, I’m watching little one. I’m paying attention. What’s next?

*Originally posted June 17, 2020

First post op appointment is in the books!

This little one was so brave and so good during her visit back to the doctor to check on how she is healing.

We were so happy to hear that her surgeon was thrilled with how she is doing. Everything is looking fantastic and is progressing just as planned. She even had a few of the dissolving stitches come out with the removal of the original bandages. (That’s a good sign )

She was given a new wrap today but that officially comes off at the two week mark, Monday. So she is well on her way through a quick and easy recovery.

But the best part of it all was seeing Emmy move and wiggle her fingers for us.

Seeing her manipulate her new hand was absolutely thrilling for us. And I really mean all of us, including her doctor.

When he came out after her surgery, over a week ago, he told us that when he separated her thumb from her index finger he felt as though it had been liberated.

I don’t know if there could have been a more poignant phrase to use in this case. It was exactly what we were praying for.

And then to see it in motion, though swollen and new as it was, it was absolutely sensational. It was every prayer answered.

Plus his expectation is that she will be able to have the ability to have a full connection and pinching motion in that hand. She truly will have nothing stopping her.

Not that she ever would have in the first place!!!

This kid is unstoppable.

I am just thankful that we are another step forward in her recovery and that she has been feeling so well and happy through it all.

This little angel is so amazing.

We are continually blown away by her.

Truly.

Now if I could just get her to not run so fast or be so wild or grow up too quickly in front of our eyes... that would be great

oh... and just for reference... her doctors name is Dr. Hadley (in case it’s hard to tell in the video )

Originally posted on June 23, 2020

I can’t even start to write this without crying.

Emerson moved her hand for the first time today post surgery. But not just that, she wiggled!!!

Last night we took Emerson’s wrap off her right hand, for good.

Now, it’s not completely healed yet, and we still have more doctor visits and therapy ahead of us... but if you’ve been following this journey with us you’ll know that this is the moment that we have been waiting and praying for.

If I’m being completely honest and giving you all the full story... Emmy was not happy last night when we took the wrap off. I don’t know if it’s that it hurt her or maybe it was just tender and painful, but I think she wasn’t sure what to think of the change in seeing her hand like that. I’m sure it was probably just foreign and strange.

However, when she woke up this morning she was excited to point out her hand to me when I went to get her out of bed.

She didn’t use it at all in the first part of the day. Which I found a bit odd but also completely understandable. Perhaps it was still tender and a little strange feeling...

But then when she sat down to have snack

THIS HAPPENED!!!

Danny and she had been “wiggling” thumbs before her surgery. So he just used the same idea to help her to encourage the same movement now after it all. And I can hardly put into words what this means to me/us!!!

To see her have that movement... and then to hear that laugh and see how proud she is of herself... I just don’t know if I can ever properly put those feelings into words.

Just knowing what this is going to give her in terms of movement and development in her hand as she grows is incredible. The long term goal is that she will be able to connect the two fingers and have a punching and grasping ability. And I have full confidence that she will be able to do just that!

I am so proud of her. She is such an incredible warrior. Her attitude and her strength is so admirable. She is quite to inspiration to so many, including me.

Originally posted July 4, 2020

It’s Independence Day This year though, everything is a little different than we are used to. So here at the Jordan house we are celebrating independence of more than just our country. We are celebrating the independence of Emerson’s lucky fin. We had our second post op appointment this week and this little warrior has been given the green light for independence. Which as a toddler is pretty much all she needs to give me a heart attack every 5 seconds. Haha. Most of her stitches have pretty much fallen out and the scabbing is all healing just as it should. The tissue at the graft is nice and pink and multiplying and regenerating perfectly. So what does this mean... Emersons thumb and index finger are successfully independent from each other. This will give her such an increased function and ability for that hand. The ultimate goal with therapy is that they will be able to have enough control and muscle function to press together and hold things between them!

And as far as everyone involved is concerned that definitely seems to be the eventual outcome. I have said this time and time again, but it’s just so dang true... We are so proud of this little girl.

She has taken everything in stride and defies all expectations. She is unbelievably resilient and always so positive. We just love her so much and are so excited to see what she does next! I will note that many have asked... “what’s next? Does she need more surgery down the road?” And the answer is, no. Barring anything unforeseen this should be the only one she’ll need. Because of what it’s done for her future abilities we don’t believe that there will be any additional surgeries necessary. Now, that’s not to say that something won’t come up. But we can’t know that until Emerson gets bigger. It will all just depend on how she develops and grows. But for now, this is it. And we are so grateful for that. So CHEERS to Independence Day!!! We have so much to celebrate today