CHEYENNE - USA
Born May 25, 2014
Mother's GBS Status: Tested negative
Gestational Age: 37 Weeks
Age harmed: 17 days old
Cheyenne was born healthy on May 25, 2014 at 37 weeks. I was induced due to pre-eclampsia. That's why she came early. I was negative for GBS so I didn't receive any antibiotics. Her blood sugar was borderline so they monitored her for that but otherwise everything was okay. We came home 2 days later and everything was going great.
On Monday, June 9 we went for her 2 week check up and everything checked out good. Tuesday I noticed she was tired but I just kept thinking that she's a newborn and they are going to sleep a lot. Wednesday, June 11, 2014 is a day I will never forget. (See progression photos!)
That morning she was eating and acting okay then around 11am she threw up and afterwards didn't want to eat anymore. I also started finding that it was hard to console her and I couldn't put her down or she would scream. I thought her breathing looked a little off but the pediatrician had told us that Monday that babies breath fast then slow so I tried not to worry and thought it was just new first time mommy jitters.
When my husband got home at 3:45 pm I was telling him I thought her breathing was off and that she didn't want to eat and it was hard to console her and she had started having bad diarrhea. When we went to change her she looked very pale and we could see every vein in her body. We called the doctor and they said to take her temp and it was 99 rectally so no fever. They advised us to bring her in anyways just in case. When we got there she started having periods of apnea (stopping breathing) and her pulse oxygen levels were in the 70's (normal is 100). The nurse screamed for the doctor and when he came in he yelled for them to call an ambulance. I rode with her and her daddy followed. I'm an emergency medical technician and I never thought I would be there with my child in the ambulance with her having so much difficulty breathing.
When we arrived at the hospital the ER team was waiting for us as the doctor had called ahead. I stood and watched as they put her on a BIPAP and listened to her lab work. (I'm also a nurse but I work in adults so pediatrics is a lot different.) Her heart rate was so high--around 250. Normal for her age is 160. The doctor decided to admit her to their NICU because in her words "she won't survive a transfer to another hospital."
When we got upstairs the neonatologist told us she was very sick and they didn't know what was wrong. They questioned me about everything, especially my health history. They needed to do a lumbar puncture but they said she wouldn't make it through the procedure so they started her on multiple antibiotics to cover as much as they could. They called in a cardiologist from another hospital because of her heart rate. Once there they were going to do a cardioversion (where they shock her to get her heart rhythm back to normal because it was so high). They decided to try a drug to slow it down first. They gave her three doses then finally a 4th dose which was double to get it down to 220 so luckily we didn't need the cardioversion.
Later that night the neonatologist said that she was extremely sick and that she was going to be honest and she didn't think she would make it through the night and we should call our family to be there. They then intubated her because she breathing had gotten worse and the meningitis was affecting her brain so much she was being startled at every little noise. Her diarrhea caused her horrible diaper rash and made her butt bleed so we had to have a heat light on her to help it heal.
The next day she was slightly improving and the doctor gave us some hope saying she looked a little better. They were able to do the spinal tap but it clotted so she had to have it done another 2 times after that before we got the results of group b strep and ecoli. She had a central IV line placed because we knew she would have at least 21 days of antibiotics. They tried that day to take her off the breathing machine but her oxygen dropped so low they had to put the tube back in. She was on it for another 2 days before being taken off and put back on BIPAP.
Her dad and I noticed Day 5 at the hospital that she had a twitch to one of her eyes and her one arms would twitch. After telling the nurse she said that was a seizure and called the neurologist to order an MRI. The MRI showed she suffered multiple strokes that affected multiple lobes of her brain including bilateral frontal, temporal, and parietal lobes and a very large one in the left occipital lobe. We did a 24 hour EEG and it showed seizure activity so she was started on anti seizure medications. She stayed in the NICU for 17 days before they transferred her to the pediatric unit for another 7 days until we were discharged home.
She was taken off the seizure medication that September and has been able to remain off of it. She has some minor effects from the GBS. She was recently diagnosed with cerebral palsy but primarily because of her muscle tone in her legs. She wears a brace on one leg and gets Botox injections to help. We work with physical therapy and speech therapy every week. She is walking and talking. it's just taking her extra time for things but if you met her you would never know how sick she was. She's one strong girl!
Even as a nurse i didn't know anything about late onset group b strep. Even before becoming a nurse I was a medical assistant for an OB-GYN office and I always just thought if you were positive for group b strep you just got antibiotic in labor--no big deal, but I was so wrong. I tell everyone and anyone who will listen my daughter's story. We are so blessed ours turned out as well as it did. If our story can help one person it's worth sharing over and over.
— Tesa Baker, USA
Tesa educates everyone she can by telling their story.
This was Monday when we went for her 2 week check up and everything checked out great:
This was Tuesday and she had some diarrhea but otherwise was just sleepy. Now looking back at these pictures there was a huge difference from Monday to Tuesday in her head and the swelling. I wish I would have caught it sooner and maybe she wouldn't have had the strokes she did:
This was Wednesday morning June 11 the day my life changed. This was around 11am:
This picture was Wednesday afternoon around 6pm after we got to the NICU. They tried bipap first but had to intubate later that night:
This was Wednesday night June 11 around midnight. Her heart rate wouldn't come down and the swelling in her head made her so startled she would scream and her heart rate would go up more so they sedated her and intubated her:
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