ELIZA (Strong little bird)

Eliza is our third child. From the very beginning I knew that she was going to be something special. My pregnancy was rough. I was very sick and I felt terrible, a lot! Worry set in that something was wrong, because just like my other two, I found out very very early that I was pregnant. The waiting game began. It was too early to tell if I was going to even have a baby, because the ultrasound tech couldn’t find anything on the screen. So we had to wait a week and come back. It could’ve been one baby, twins, or nothing at all. The next week finally arrived with tremendous hesitation we entered the room again. Hearts racing, to get an answer, there was a heartbeat, and there was a little baby. I was so relieved, yet in my heart something just didn’t feel right. I brushed it off as hormones and went on with the pregnancy like I had done in the past. 

A few months had gone by and I had the chance to find out the sex of the baby through a blood draw. My husband was out of town and I really didn’t want to wait for the gender reveal the following week when he did get back in town, so I sat and pondered if I wanted to find out without him. That very same day, I also declined any genetic testing because I figured that I was still young. I didn’t need to be tested for anything. So I smiled and said, “No thank you.” Being the nice girl I am, I patiently waited, yet again, so he could be there with me and we find out together. We brought our son and daughter with us to the ultrasound. One was ecstatic and the other was crying because he wanted a brother. We can’t win them all! After we found out that she as going to be a girl, I immediately started thinking of names for her. I had a very hard time coming up with one. Searching and searching I still couldn’t find one, so I decided to give it some time. 

At my Level 1 ultrasound is where our world began to get “shifted”. The ultrasound tech couldn’t find some of Eliza’s organs and there was an issue with her heart. The next week was so busy for us. We met with our perinatologist. They were able to locate all off her organs and confirm that she did have Trisomy 21 and a heart defect. The following day we visited the Children’s hospital where Eliza would have her open heart surgery. We meet with our cardiologist and the man who would help save our daughter’s life. When you hear the words, “She will have surgery between 4-6 months”, you kind of go in shock. I wasn’t happy. I was very upset. And I don’t think I was very nice either, although I tried. It was too much for me to process. Here I am, just finding out that my child has Down syndrome AND she has to have heart surgery! 

That night I couldn’t sleep. I did what every doctor, nurse, and all human being told me NOT to do. I Googled. I Googled worst case scenarios, pictures, all kinds of stories. I wanted information. I wanted to plan and prepare myself for what was going to be happening in my near future. I came across two blogs: Kelle Hamptons page of her diagnosis story, and Noah’s Dad. I ended up on the National Down Syndrome Society’s page and read 2 books that night. I was ok that I was going to have a child with Down syndrome. I had worked with special needs kids and even babysat a little girl who has Down syndrome when I was in college. I was OK. What I wasn’t ok with was all of the information. The negative information. Your child could have this or your child could have that. I immediately turned that negative thinking button off in my head and I haven’t looked back since. 

Restless nights were still a thing because i did have so much on my mind and I didn’t have a name picked out for her yet. I searched and searched but nothing sounded right. One day, my daughter kept asking me about relatives 5 generations back on my grandmother’s side of the family. After we traced back to that 5th generation, we found out that our grandmother’s name was Elizabeth Aveline. I thought it was the prettiest name. When we searched the meaning of the name I instantly became emotional. “Strong little bird” This was it! I knew that this was the name she was going to be called. I was so happy that my daughter kept asking me that day about our family. Time and time again, she has proven that she is our “strong little bird.” 

The day was coming near her due date. I gave Eliza her first ever pep talk about 2 weeks before because she was breech. Thankfully she listened and turned! We had several pep talks along the way. She decided to come before her induction date. At midnight, she let me know she was ready to make her debut. The next morning she was born. She was so beautiful! I only got to see her for a brief moment before NICU wisked her away. I was so ready to get down to see her. I finally got to hold her! We had another little pep talk. Mostly for me because Lord knows I needed one! My heart was full. Her brother and sister thought she was the best thing ever. Her sister would talk to her and sing her songs. Eliza stayed in NICU for 23 days. We were on Eliza time. Because of her hypotonia, it was harder for her to take a bottle. We practiced every day and had a wonderful feeding therapist who helped us out too! Once she was able to take all of her bottle, we were out of there! We were so ready to have her home!!

With doctors appointments and therapies, it was very busy. Four months arrived and when Eliza got to the hefty weight of 11 kilograms, her heart surgery was scheduled. As every parent would be, we were nervous wrecks. We prayed continuously and gave everything over to God. My daughter was in heart failure. It was summertime and it was hot! She would sweat and I would sweat when I held her. We couldn’t go outside and enjoy the summer because it was just too much for her. She HAD to have her heart mended. 

Pre-op day came and it was so long. There were blood draws and echocardiograms, x-rays, and all other kinds of tests. She was tired and so were we. That night, I didn’t want to go to sleep. I didn’t want to wake up and have to hand my daughter over to a nurse, but I did and that was that. No turning back. This was happening. The amazing thing was we were calm. All of the wonder and worrying was gone. I knew it was the continuous prayer that went on the entire time Eliza was at that hospital. I was calm and I was ok. My parents and our Pastor came and sat with us while we waited what seemed like forever. We received updates along the way when they ended one thing and began the next. Then the final call came that the doctor was finishing up, she was breathing again, and he would come and talk to us. The weight that was lifted off of my shoulders at that moment is indescribable. Her surgeon told us that it was very a very successful surgery and that he doesn’t see any more surgeries in her future. We were so thankful and relieved! We will forever be grateful to Dr. Kanter and his team for mending Eliza’s heart. Seeing her in CICU was tough. There were some minor hiccups along the way, but in three days, yes three days, she was discharged and we were on our way home to rest and heal. 

Everyone was so happy to have her home! Her sister, at the ripe old age of 4, became her home doctor and nurse! She named herself Dr. Baby! She made sure she was ok and that nothing would ever happen to her. With each day, Eliza grew stronger and stronger. Her once weak voice began to get louder. Her cries didn’t sound weak anymore. The sweating was gone. The color of her skin looked amazing! She was finally well and we could began to see her personality because she felt better!

Having a child with Down syndrome, you learn to appreciate the littlest things in life. Instead of milestones, we celebrate inch stones! When Eliza would learn something new, we would celebrate it! Rolling over was a big deal in our house, and boy did this kid love to roll! She said “mama” and “Lala” (her sisters nickname) at just 4 months old. Her smiles and laughs lit up the room and still do!

 When cooler weather hit she caught a cold and ended up in the hospital for RSV. This began an ongoing visit to the doctors office. In February of 2017, she became sick. We thought she had RSV yet again. We were wrong. We rushed her to the hospital and she tested positive for pneumonia. Thinking this could be the worst thing that was going on with her we found out were dead wrong. A day in at the hospital, one of the doctors came to our room and discussed that they had ran some blood tests to make sure that they were staying on top of the pneumonia and she wasn’t getting anything else. They then began to tell us that they found some issues with her blood. BLAST cells had shown up. This was a sign of cancer. I thought it was a fluke. There’s no way that MY daughter had cancer. Again, the waiting game began again. Wondering and worrying what the heck we were going to do, they told us they wanted to transfer Eliza to the Children’s hospital which was close to two hours away from our home. A Life Flight helicopter from Children’s was scheduled to come and pick me and my daughter up. It would only be a 15 minute ride. For a person who has NEVER flown in ANYTHING before, I was frightened. I psyched myself up for this flight that we were about to take. God knew how upset I had become because a terrible storm came and the helicopter wasn’t able to fly in it, so we were transferred by ambulance. My husband met us there and we were settled into our home away from home. That night I returned from eating supper alone to find out that Eliza did in fact have cancer, Acute Myeloid Leukemia (AML). The only positive that came out of that sentence was that she would have a better success rate since she has Down syndrome. Their bodies just react to the chemotherapy better to help fight the cancer. It was an out of body experience for me. The room felt like it was spinning and then someone ran a dagger through my chest. I just kept saying to myself, “There’s no way that she has cancer.”

We were told that we wouldn’t get to go home for over a month. The first round was going to be the hardest and the longest and it was. Eliza spent about a week in ICU. She was pretty sick. They placed a PICC line in her arm and began chemotherapy immediately. With as bad as she felt, she maintained a smile on her face. She even did some of her therapy in ICU. Talk about strength! The pep talks were kept coming between us. Every procedure, every needle stick, every echocardiogram, I would talk to her. I wanted her to hear my voice and know that I was going to be there with her every step of the way cheering her on with whatever it was. With all of the hell that was going on around us, I sat back and watched her while she slept and thought to myself how thankful I was. I was thankful that the doctors caught what was going on at the very beginning, I was thankful that her lumbar puncture came back with NO TRACE of cancer in her bone marrow, I was thankful that she was at one of the best hospitals and she was getting the best care. At that moment my motto was formed: Keep Moving Forward. You have no choice. You take the good with the bad and move on. I made myself stay positive, yet again, because what else was I going to do? I wasn’t going to sit there and have a pity party. There was no time for that! I made sure that my daughter had the best of the best and see a smile on my face at any given moment. My warrior mode was turned on along with hers and we were going to fight this thing together! 

You learn a lot “living” at a hospital. You meet a lot of people and make new friends along the way. Eliza had a lot of visitors! Therapists came to the room so she could continue to progress on her inch stones and not get too behind. Family and friends stopped by which was wonderful!! Therapy dogs visited and gave slobbery kisses. Even clowns came by and sang songs and blew bubbles which was her most favorite thing in the world! But the best medicine for Eliza was seeing her brother and sister! She missed them so much and when they were finally able to see her up close ,instead of FaceTime, she immediately felt better. They would bring pictures and drawings so her room was always happy and decorated with home. 

It was wonderful to go home and take breaks from the hospital. For five months we traveled back and forth from home to the hospital and some emergency visits along the way, which always would hit on a holiday for some reason! We also celebrated her 1st birthday at the hospital! We made the best of it and then we really celebrated when we got home from that round. 

Fast forward to the final round of chemo! The day came!! It was FINALLY time to party and celebrate with Eliza and watch her ring the end of treatment bell!! I didn’t think that day would ever get here, but it did. It was a very busy and exciting day. Before she rang the bell, Eliza was on the radio doing a fundraiser to help raise money for the hospital’s cancer center. She let her voice be heard and we shared her story with the world. Then we all gathered, family and nurses who took care of her and watched over her for the past six months, and cheered her on while she rang the mess out of that bell. It was a beautiful sound. A sound that I never wanted to hear nor planned on hearing. After we said our goodbyes we headed home. Home sweet home!

Eliza is now 2 and is thriving! She’s been in remission for a year now and just recently celebrated her 2nd Heartiversary. (We celebrate each year on the day that she had her open heart surgery. We celebrate life!) She talks all day long and carries on many conversations with her baby doll. She enjoys sitting in the floor and looking at books. She’s not quite walking yet, but she cruises the walls and furniture to get where she’s going. When her sister is home from school, she plays Barbie’s and baby doll’s with her, and also gives performances on the main stage in the living room. She loves to sing and dance! Her brother gives the best hugs and she misses him during the day when he’s at school. She likes sneaking into his room. She is a daddy’s girl and I know he will smile ear to ear when he reads this. But it’s true. He just has the right spot for her in his lap and that’s where she fits ever so perfectly. The love that her family has for her is endless and they would walk to the ends of the earth for her. 

Our Eliza is a pure delight. I know for a fact that God has placed her in our lives for a reason and I thank Him every day for her. She brightens our darkest days. We laugh so much more since she’s come into our lives. She has taught us so many things that we didn’t even think were possible… like how to live and enjoy the simple things.She’s taught us that being stubborn is good. She’s taught us how to slow down. She’s taught us patience, the value of waiting, and learning to actually breathe. This child has only been on this planet for two short years and has already taught us a lifetime of lessons. She’s a true warrior and she does not give up. I know that the sky is the limit for her and I’m looking forward to see what her future will be. She has my heart and my unconditional love. A love that will surpass anything. Her extra chromosome is awesomely amazing and she is “Practically perfect in every way.”

“Every good gift and every perfect gift is from above.“ James 1:17