Meet Mighty Riley
Read about Riley's story as her mother explains below.
Let’s start from the beginning, can you tell us how you learned about the pregnancy and your initial reaction?
We were trying to get pregnant for about 4 to 5 months when we found out and were very excited when we finally did.
When did you know you would have to spend time in the NICU?
We found out at a general check-up, as my emotions were high. A nurse jokingly said something was wrong with me because my blood pressure was high, and I had a melt down right there in the office. The doctor decided to do an ultrasound to calm me and discovered the baby had stopped growing and was too small.
Riley was our first child, so she was our first one in the NICU and at that time, it was so scary because we were new parents and didn’t even know a baby could survive that small. Riley was measuring about a pound on the ultrasound.
When we held her for the first time, she fit in the palm of my hand and she had tubes and wires everywhere. Riley was so small that we were afraid we would hurt her.
How long were you in the NICU what was it like when you heard the words “you will be taking Riley home?”
Riley was in the NICU for 97 days. We were extremely excited and nervous at the same time when we finally got the news she could come home. We ended up taking her back the following weekend after she came home for something very minor to get checked out because we were scared something was wrong.
Did you have a lot of fears or anxieties regarding germs once you brought your baby home?
Yes, we made people wash their hands and stay away if there were sick or had allergies. After all we had been through, we couldn’t risk her getting sick because she was still so small and fragile even after coming home.
When did you know that Riley would need extra therapies? What therapies is she still in now?
Riley has Pierre Robin sequence which causes her to have a slight lisp. She needed a lot of speech therapy to help her with forming sounds. She also needed OT therapy for a long time due to having had a feeding tube surgically inserted into her stomach. She couldn’t do any tummy time at all for many months after coming home and as a result, her motor skills and hand strength are very weak. She is currently not in any therapy.
What does a typical day with Riley look like now?
Riley gets up around 6:45 a.m. even though she is not really a morning person. She goes to school (1st grade) from 7:45 a.m. to 2:20 p.m. After school she comes home and plays with her siblings for a while and then does her homework before dinner. After dinner she is allowed to have some TV time and then there is reading time before bed.
Any advice you would give another family going through the process? Anything that really helped you get through the experience?
The hardest days were watching other families taking their babies home, while part of you was happy for them, it just never seemed like it would be our turn. We would suggest to just take each day as it comes and see it as a blessing, try not to stress getting them out of the NICU because the day will eventually come, and it will seem like it flew by. Having family and friend support really meant a lot for us as we were able to take turns visiting Riley, praying for her, and building up our spirits because we were able to have some time away from the hospital not having to worry that she was there all alone. Having a close circle and family to share in your pain and be there to give you strength through it all is important.
Below is a post from Riley's Mom Jessica explaining more of Riley's story when Riley was 7 months old:
Riley Marie Simpson
Born 11/24/2013 - 1lb 14oz / 13.25” long
Little Riley was born to mother Jessica Simpson and father Joshua Simpson. She was 10 weeks early (30 week’s gestation) and was only 26 weeks IUGR (stopped growing). Her mom Jessica got pre-eclampsia during the pregnancy at 29 weeks. Riley had very little blood flow and nutrients getting to her body. After 5 days in the hospital with multiple test and two rounds of steroids the doctors decided to do an emergency caesarian as it was unanimous she would do better once outside of her mother’s womb.
Riley was born a micro-preemie and at the time she was one of the smallest baby’s in the NICU at Presbyterian Medical Center in Charlotte, NC. After Riley was born she went through a lot of issues she had to overcome before she could come home. She had jaundice, multiple blood transfusions, MRSA contraction, multiple surgery’s (hernia, gastrointestinal tube), stage 1 ROP disease in her eyes, CPAP to help her breathe, high and low flow oxygen, Pierre-Robin sequence (underdeveloped chin & small pallet issues), feeding issues with reflux.
Riley is definitely a miracle baby and one tough fighter. She had many up and down days where there seemed to be no end in sight or if and when she may come home. Her parents stayed with her at the hospital every single day she was there. They lived at the Ronald McDonald House of Charlotte the entire time Riley was in the hospital so that they could be close to her at all times. After a 97 day journey in the hospital Riley was finally able to come home for good with no monitors and no oxygen. She did come home with her g-tube to use to assist in feeding her until she overcame her micro-preemie status.
At 6 months old Riley finally was strong and experienced enough to be able to finally eat on her own. At that time her surgically implanted feeding g-tube was removed. The hole that was left over was supposed to heal and close within a few hours. Unfortunately this did not happen and for 5 weeks Riley had a hole in her belly where food would constantly leak out. At that point the doctors decided that the only way the hole would close up would be with surgical assistance. Riley underwent her third surgery in as many months to have the hole closed once and for all. Everything went well and besides a small scar on her belly she was fully healed and able to develop and grow like a normal baby.
Now she is just over 14 lbs at 10 months old (7months adjusted). She is doing great at home with mom and dad. She has learned how to sit up on her own and is now eating baby food vegetables and meats. She has a long way to go to catch up but her fighting spirit is going to take her a long way.