Happy Two Year Anniversary Lydia!

Today Lydia is two years post-Fontan. Wow! It's hard to believe that as I am typing this, my Lydia was in open heart surgery, and I once again found myself in that familiar waiting room. Waiting and waiting and waiting. This morning as I was looking back over some pictures and watching some home video of the days leading up to that surgery, my mind was flooded with all of the overwhelming thoughts and emotions I had on that day and in the days prior.

From the time I was 23 weeks along with Lydia, I had heard about the three surgeries she needed. The first happened at 10 days old and the second at 5 months old. But that third one, the notorious "Fontan" was always looming. We never knew when it would be. It could have been at two years old or six years old. We held our breath at every doctor appointment when they weighed her. We wanted her to grow and gain weight, but "35 pounds" was the magic number. Every time she climbed the scale, we knew it was getting closer.

In January of 2006, Lydia's energy level started to noticeably decline. She was only able to play for a few minutes before dropping to the ground to catch her breath. Her little body needed more oxygen and her small shunt she received at 5 months just wasn't enough. In June of 2006 she reached 32 pounds and her cardiologist and her surgeon decided that she needed her surgery that summer. She was doing great and they wanted to do it before her health started to decline.

We were very nervous about the surgery, but Lydia told us one night, "Mommy, I'm not scared about my surgery, God is going to hold me in a big bear hug...like this!" and she squeeeeezed her stuffed duck really hard. Her faith was and is amazing!

Lydia's surgery went very well that day. Although she had to be on the heart-lung bypass again and her heart was stopped, her surgery only lasted 5 hours from the time they opened her up until we received the call to tell us they were closing her. Praise the Lord!

Seeing her in CVRU after surgery was rough. But even with all of the tubes and wires, she looked good. What I could not ever have been prepared for was the emotional roller coaster that was to follow. When you have a baby who has to have surgery, there is comfort in knowing that they are oblivious to a lot of things. They don't know what's going on, they don't remember most things, etc. But this go around was different. Lydia was almost three and she is a super smart little girl who could talk extremely well. She knew EVERYTHING that was happening. Hearing her verbalize all of her pain, her fear, her longing to be home was so difficult. The worst thing was having to leave her in CVRU (it was the rule) and listening to her cry for me and call my name as I had to turn around and go out those doors. Feeling like your heart is being ripped out is an understatement.

Even though she was in so much pain afterwards, Lydia remained so sweet. I could tell so many stories about this, but the most memorable was when she was moved to the floor and she was giving out gummy bears to the lab techs after taking her blood. And then when Dr. Baird removed her chest tubes she even gave him gummy bears and a sticker for doing a good job! I heard another mother say one time, "It's like God gives them a little extra something special because He knew what they'd be facing." So true. God's grace is amazing.

Three days after surgery, Lydia developed a complication called a chylothorax. With this complication, we were being faced with perhaps 3-4 weeks longer in the hospital. The Lord really answered pray and moved in a mighty way! He cleared up the problem and Lydia came home 10 days after surgery! That in itself is amazing. God was so good to us! We know of too many sweet children who passed away soon after this operation because of the complications.

So, this morning to celebrate her "Two year post-Fontan anniversary", we will be making heart shaped pancakes. =) It's really neat how the Lord works things out, because tomorrow, we have the opportunity to share Lydia's story at Levine Children's hospital. We are working feverishly on some things. Please pray that we can get it all finished. Pray also that God will be glorified through what we share about what He has done in Lydia's life.
Lydia about to go back to the OR.
When Lydia woke up from the anesthesia and was taken off of the vent, she was SO thirsty. She wasn't allowed to drink but after much pleading they let her have a popsicle.
This was two days after surgery while she was still in CVRU. She was so glad to be able to wear clothes!
When she started feeling better, she loved to take rides around the floor in the go-kart.
Can we say "Double Trouble"? I love that picture! =) For those who don't know, those little balloons are her "JP's." They collected fluid from her chest tubes. Her middle one had been taken out that morning. She was so happy to just have two chest tubes! She knew that every time a tube was taken away she was getting better.

She made that sock puppet at craft time in the playroom.

1 comment:

  1. It must've been such a difficult time for you, but it sounds like the Lord was so good to you. Happy Anniversary, Lydia! We love you!


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