After my first daughter, Elizabeth, was born, we knew that we wanted to have another baby right away so they could grow up together – do all the things that close in age siblings do together through the years. We were beyond excited to learn we had become pregnant so quickly when we did. Everything at first was very familiar to me: cravings, mood swings and the extreme tiredness.
We went for all the typical testing that is completed. When you become pregnant, you expect to have a typical, healthy child. We had no worry. I remember saying at the 20 week anomaly sonogram, ‘It doesn’t matter if they find anything wrong, this baby is already so loved.’
At the next scheduled doctor’s appointment, I was told something was found at that 20-week anomaly scan. We needed to go to Children’s Hospital of Buffalo for further testing.
Our first appointment we were still so hopeful that just because something was ‘picked up on’ that they would take a good look and send us home saying it was a mistake. Unfortunately, that was not the case. After all the information was collected we were told some terrible news. The doctor we had seen at that point didn’t think Gracie’s brain would develop enough to support life and that she wouldn’t make it to delivery.
We were given a choice:
Go home and wait for the baby to pass…Or continue to come in weekly for check ins on the baby
I can tell you from experience, after you get news like that, your outlook on life is forever changed. Everyday is such a blessing with anyone you love. Take time to smell the roses. Play with your children. Go for the walk. Say ‘I love you’ and say it often.
We decided it would be best to have weekly checks. We then decided that it was time for a second opinion. We met with another specialist. The prognosis was a bit more positive, but still very unknown. We met with several specialists in a few short weeks to prepare us for delivery. We toured the NICU, we met a neurosurgeon, cardiologist…I could keep going. We had a plan developed of what would happen at delivery.
Knowing that our baby would go to the NICU after being born, we bought superhero capes for the incubator – Superman and Wonder Woman. If we were lucky enough to have a baby in the NICU, we knew that he or she were already a SUPERHERO.
Delivery day came and I was induced. They said we could try natural delivery, but at anytime the baby showed distress, it was no longer an option and we would do a C-section. Everything moved along as best as possible. When it came time for the baby to come, the room flooded with people. They laid her on my chest for what felt like only a second, announced she was a girl, then took her off and began the testing.
It was a girl! Our Wonder Woman was born!
I had a lot of medicine and hormones in my body, some of this is blurry – I do remember my mom saying the baby scored a 9 on the APGAR – newborn testing. She said that was a good sign! Then I remember the NICU team saying sarcastically, ‘We don’t want this baby, she is too healthy!’ It was the best moment ever!
We went to the mother baby floor and she stayed in the room with me. She didn’t need a tube to breathe or eat! It was amazing!
My Amazing Grace.
Our plan was to bring her home and love on her for as long as we could. The outlook wasn’t exactly good, according to the specialists who had seen her after birth, but we believe that she would write her own story. We had a long list of things to watch out and look for that would require us to immediately bring her back to the hospital. We would do our best to keep her as loved and pain free as possible.
We have had many ups and downs along our journey with Grace. Her future is very unknown but we make our very best effort everyday to make memories and enjoy her. Grace has already beaten so many odds given:
- She is legally blind.
- She is only tube fed and can’t have anything by mouth.
- A machine is used for her sleep apnea.
- She has chronic lung disease that requires treatments daily and oxygen as needed.
- Her hypotonia, lack of muscle control, is so severe that she can not move her arms or legs willingly.
- Her daily medical routine is intense – she is currently on seizure medicines and several other medicines for other reasons.
- She is missing sections in her brain, some spots are under developed, disorganized and some are completely smooth.
Doctors say Grace will never walk or talk, but in our home we NEVER say NEVER. She makes progress slowly but she is making progress. She always has painted nails and toes and the cutest head bands. We are big believers in neuroplasticity: the more you use your brain, the stronger and bigger it becomes!
We work hard with her every day to have her reach her best potential and we believe she will! HOPE is a very powerful thing!
We thank the Korba family for sharing their story. To help the family with medical expenses, please head to Gracie Goo’s Goodies, an online store with crafts designed by Grace’s mom, on Facebook by clicking here.
