The Story of Shaelynn

My heart is heavy for this sweet girl today. Sometimes I forget everything we went through together (and apart) for the first three weeks of her life and for the first year after. And even every year until this point.

She was born with a sacral taretoma. In English, it was a tumor in her abdomen. This was not something we prepared for. The last ultrasound at 20 weeks did not catch this. It was a shock to the doctor delivering her. And even more so, to us. She weighed 4lbs and 13oz full term and had a massive lump on her back side, as well as a pertruding tummy. She was rushed to the NICU in San Diego before I fully came off all the medication I was doped up on. I did not hold her before she left. I did not even get time alone with her before she was taken away.

 

How could I forget all of this every time I look at her sweet face? She is a fighter! I've always known that! Her strong will today makes it easy for my mind to erase those sore memories. Sometimes, her needs go unmet because she is the oldest and is expected to understand. And for the most part, she does. But I still forget, she is only five. She is our first child. And for the first three weeks of her life,  she was our hardest struggle as first time parents.

People asked how we did it. I honestly could not have done it without Jesus. I had never clung to Him more than in the time she spent in NICU. But I'm not going to lie, it was a complete blur going through it. We didn't miss a day visiting her. We got there as early as we could, and stayed until they kicked us out every night. She was a week old when she went in for surgery. Chad and I had to learn how to catheterize her. And we had to beg the doctors to let us take her home before she reached 5lbs. She had a nurse come to our house twice a week for three weeks after. All of it was a state of shock until we looked back.

 

 

Today, we saw the surgeon who removed her tumor. We hugged the doctor and thanked her for her skill after the 5 hour surgery had been completed. I almost hugged her again today with tears welling up! The tumor was benine, but her bladder was attached to her belly button from the inside and her tail bone wrapped around the tumor. They didn't know that until they opened her up, front and back. She has had doctor visits and blood work scheduled until this year. The check ups with the surgeon are to make sure the tumor does not grow back. These are very invasive and traumatic, to say the least. Blood work to check her white blood count, and the urologist to make sure her bladder and kidneys still function properly. We were sent a life time supply of catheters that we never had to use. Potty training was suspected to be a nightmare, but it was a breeze. She has small issues but nothing compared to what we were told to expect. You would never know the surgeon told us that she may not walk. She walked at 10 and a half months old! She is a miracle. A daily reminder of God's goodness.This girl is AMAZING! And I overlook it so easily sometimes.

I explained to another mom at her school yesterday about the preparing for this appointment and it felt weird talking about it. I just assume everyone knows these things about Shaelynn. But why would they? She is totally normal on the outside. And I take it for granted until these much traumatic appointments come up. This is something that will never leave her. And I pray she doesn't look at herself as something less just because of the scars. This girl is (and always will be) mommy & daddy's little hero.




her crib in the NICU set up with pictures of mom & dad and a special elephant that she still has

 

 

the day we brought her home

 

We hear back in a few days about her white blood count which will decide the end of the check ups with her surgeon, as well as clear the chance of the tumor returning. During her visit today, it was confirmed that her belly button is herniated, and she will need surgery to close the hole. This will also make her "outtie" an "innie".  She will see her urologist for a renal ultrasound soon. And I will be scheduling her surgery date within the next few weeks. It has been a long journey that is finally coming to an end this year. Please continue praying for our girl. I will update here once the chapter has finally been closed. Chad and I sincerely appreciate the love everyone has shown for her throughout every step of her story.

 

The most perfect button.

 

 

 

Today after her doctor visit. She was rewarded the Giraffe.

 

 

For I bear on my body the scars that show I belong to Jesus.

>>Galatians 6:17<<