Thank you to Savannah's mom for opening up and letting us get to know Savannah!
What were your first thoughts when you found out you were pregnant with Savannah?
Yes, we were excited to get pregnant with Savannah! We had 3 other children and had just lost my father. I didn’t find out until I was 6 months pregnant that Savannah had any health issues. We did find out earlier that there had been what they called a “vanishing twin”. I think God thought all the care and health needed to go into the development of Savannah.
What did you know about the NICU prior to having Savannah in there?
We had a tour of Levine’s Children’s hospital prior to having a scheduled C-section. We saw the NICU since she would need to go directly after birth. Everyone was very nice and helpful!
How did you maintain the rollercoaster of emotions that the NICU causes?
From the moment of Savannah’s birth, it was a ROLLERCOASTER! I had to recover from a 4th C-section, I had 3 kids at home, my baby was taken straight to NICU, I got the flu and couldn’t visit her/hold her. They ran all kinds of test on her the first few days to see what this first course of action was to be. She was scheduled to have heart surgery at 7 days old! She was also born without a spleen so they had to monitor her for infections. I was a mess to leave my baby in the NICU go home and recover from flu before her surgery! I did have help from my mother and father in law with the other kids which helped relieve some stress. My husband was also by my side during this time. I had my church family praying too! I had friends and family praying, calling, texting, offering up help.
What extra precautions for germs did you take after coming home from the NICU?
Germs, yes! I am still extra cautious due to her not having a spleen. We had the house deep cleaned before coming home. Sanitizer everywhere. No visitors at hospital. Think it was almost 2.5 weeks before my kids were able to see their sister. We came home about 6 weeks after Savannah was born. We didn’t take her anywhere except doctors for the 1st few months.
How long has Savannah needed extra therapies? When did you realize she would need them?
Savannah had PT/OT/Speech/swallowing….she had Cardio, Nero, Pulmonary, Peds,
developmental drs. She had at home therapies until she was 3. We also noticed she had some left side weakness we had to address. They believe she had a mild stroke during one of her surgeries. Then were took time off to see how things developed. She went the preschool and was learning and thriving. However, starting Kindergarten during Covid didn’t help!! She wasn’t getting what she needed from school and zoom classes, so we picked up OT/PT/Speech on our own. We knew she had struggles with learning, processing, left side weakness so she was getting that help for a few years. We also had some Nero test and learning testing and found out she has auditory-processing disorder and dyslexia. We picked up with a group that one of my other kids used in past years called Speech Language and Pathology Group to help. This is where we asked for help with tuition and applied for the Mighty Bee Grant
How did you hear about Bee Mighty and what made you apply?
The Speech Language Pathology group told us about this grant. We applied and was awarded some money this past summer which helped Savannah get therapy 2 days a week instead of 1x a week. They don’t file insurance and our insurance doesn’t cover this service so it has been difficult to pay for the services she needs. We will be submitting for another application soon.
What does a typical day with Savannah look like now?
She is a 7-year-old young lady! She has been through so much in her young years! 3 heart surgeries, many hospital stays, ER visits, pulmonary issues, developmental issues, medications, testing etc. but she is a trooper! She is in 2nd grade and loves to learn, try new things, does TKD, tutoring 1x a week, speech/language group 1x a week, she gets OT and extra help with the school each week. She sees her Cardiologist 1x a year, Pulmonary 1x a year
Do you have any advice for parents currently going through the same experience? Prayers! Ask for help! Don’t beat yourself up! Ronald McDonald House was a savior too! Take deep breaths and let yourself have “downtime” even if its walking out the room for 10 mins to get a coffee or walk outside!