Hi my name is Erin Crissman and I am completing my internship with Bee Mighty this fall. Your

family has been selected as our Mighty Family for the month of October. Your daughter, Lucy, will

be our ‘Mighty Bee.’ By sharing your story, we hope to inspire Bee Mighty loyalists and other

families that have a similar journey.

What were your very first thoughts when you found out you were pregnant with Lucy?

We were excited! My husband Aaron and I had been together almost 8 years, but married for only 6

months. Lucy was planned and we were finally convinced we were ready to have a baby. I think I

took 6 pregnancy tests, I just couldn’t believe we were actually going to do it!

Briefly what were a few highs and lows of your pregnancy and how long did it last?

I was really sick with my pregnancy. I was teaching school and would have to step into the hall to be

sick. Once I had made it past the morning sickness at about 14 weeks, I thought the hard part was

over. Then we found out at 18 weeks that Lucy had enlarged ventricles in her head. We went to the

high-risk obgyn and had so many ultrasounds throughout the rest of the pregnancy. They really

didn’t know what was causing them to be enlarged, so they couldn’t really give any answers, just

scenarios. It was decided that I would have a scheduled c-section at 39 weeks because of the size of

Lucy’s head and to save her the trauma of a vaginal delivery.

What were some of the fears that you had during this time?

I was scared all the time, but tried not to think about it. People would tell me that it was probably

nothing. My ob said she just delivered a baby with enlarged ventricles and the baby was fine. I hung

on to these stories. We met with a pediatric neurosurgeon when I was 8 months pregnant. They

thought she might have hydrocephalus and we were preparing for possibly having a shunt. When

we met with him, he said we would do the surgery after she had a brain MRI after birth, but he

warned me that while a shunt would relieve the hydrocephalus, there would be nothing he could do

about the brain damage that may have already been occurred. My husband and I were floored. This

was the first time we considered the fact that our baby might not be “normal” or have a problem

that couldn’t easily be “fixed”. I sobbed in the parking lot and all the way back to work. I remember

thinking that this would not be the case, she was going to be fine.

How familiar were you with the NICU?

I know many of the Bee Mighty kids were micro-preemies, but Lucy was born at 39 weeks. My

doctor told me we would deliver by c-section and then put her in the NICU for monitoring until we

could do a brain scan and MRI. I truly believed everything was going to be normal, and honestly

pictured the NICU as a more monitored nursery. I had no idea that she wouldn’t be able to leave it

to come to my room or that I would have to scrub in before entering. In retrospect, I should have

prepared myself. I guess I was in denial. I spent way more time worrying about my nursery and

what type of diaper pail to buy!

What was it like when Lucy was born? Was it scary or exciting? Did you get to see her right

away? What was her weight and length?

I didn’t want to have a c-section or have her go to the NICU or do MRIs on her second day of life, so I

remember feeling really out of control heading into the hospital. The c-section was difficult. I

started to panic when it began. They gave me something to calm me down. There was a lot of

pressure and I felt very out of it. I did get to hold her right away. They put her on me and she tried

to nurse for a minute. It wasn’t very long and I was so out of it, it is hard for me to remember now.

They took her away then and wheeled me to a room closer to the NICU, but not in maternity. They

told me to sleep, but I began to realize that I wasn’t going to be able to see her. I really wanted to

nurse and knew the first hours were important. I feel so stupid thinking about it now, I knew she

was going to the NICU, but never asked any questions about the logistics! They brought me a pump

and I pumped colostrum. My husband would run it down and the nurses would give it to her. I

realized I wouldn’t get to see her again until I could get down there and I was still numb. It was such

a helpless feeling. She was 7lb. 15 oz. I actually don’t remember her height. I know so many NICU

babies are premies and size is so important. In my case, I remember thinking that none of the

details like height/weight really mattered. The only thing we really cared about was what that brain

scan would look like.

Describe the first time you were able to hold Lucy.

Almost 24 hours after I had her, I was finally able to get up and go down to the NICU. It was

frustrating because my husband and in-laws were able to go down to the NICU to hold her, but I

couldn’t. I know now we were lucky. Many NICU parents go months without being able to touch

their babies. I was able to hold her as soon as I got to her. I held her and tried to nurse her, but at

this point, she preferred the bottle. It’s strange to describe, but when I held her in the NICU, I felt

like everyone knew her better than me. The nurses, even my husband had gotten to spend so much

time with her and I felt like I was just meeting her. I just wanted to take her home.

What was your support system like during the time spent in the NICU?

I was lucky that Lucy was only in the NICU for 5 days. I was actually in the hospital recovery for the

same amount of time, so we got to be together…even though I couldn’t get to her for awhile. My

husband stayed on the uncomfortable couch/bed in the hospital and my in-laws and father were in

town. My mother came and stayed with us when I brought Lucy home from the hospital. My best

friend also came to see me every day. I was terribly depressed and was definitely poised to

withdraw. Luckily I had an amazing support system that wouldn’t let me and helped me get the help

I needed.

What was the biggest challenge you faced during Lucy’s time in the NICU?

The hardest moment was when they sat us down and gave us the results of the MRI. They had done

a brain scan and it looked normal. When I heard that I started to get frustrated. I wanted them to

get her out of the NICU. I kept saying, “she is fine, they are just doing this out of precaution!” My

husband and I were in the NICU and I was holding Lucy. A nurse came and took her and put her

back in the cradle. The neonatologists came and to talk to us. They pulled the separation curtains

and told us the results of the MRI were “not good”. They told us she had polymicrogyria and gave us

a explanation printed off the internet. It was so rare and they didn’t have too much to tell us. It was

like being in a tunnel. I heard mental retardation, she might not walk, not talk, she will probably

have seizures. I remember looking at her lying there and feeling so disconnected from those words.

My husband and I crumbled. I sobbed and kept asking “what can we do?” There wasn’t anything we

could do. The doctors left and those amazing angles on Earth, the NICU nurses, swept in. One cried

right along with me. She kept saying, “I am a mother too.” For three more days we would go down

to the NICU and meet with people from Early Intervention, Kidspath, physical therapists, and family

counselors. Lucy’s diagnosis has since changed to MPPH and cerebral palsy.

Can you describe the day you brought Lucy home? Was bringing her home more easy or

difficult than you had imagined?

I was so scared to bring Lucy home. I felt like she should stay in the hospital where people could

take care of her. The doctors seemed surprised that she didn’t have seizures yet and was eating

well. They felt it was fine to bring her home and on her fifth day in the NICU we “roomed in” so we

could spend the night with her. The physical therapist came by and taught us range of motion

exercises. I remember being with a NICU nurse and crying and saying that I couldn’t do this and

how was I going to take care of her. This nurse was holding her and looked at her with so much

love. She looked at me and spoke to me sternly. She said this is your daughter and you are going to

take her home, take care of her like any other baby and love her. That nurse probably has no idea

that what she said helped me get through the next few days. I just thought about doing the day to

day things. She needed diapers changed and burping. It helped me get through the days.

What is your most precious memory from the time she was born to the time she turned a

year old?

This is an easy one! It was when she smiled at us. For weeks her eyes would lock to the left and we

couldn’t really get her to respond too much. Then after a few months, she started smiling at us! She

seemed to know us and recognize us. We realized she was in there, it was just taking her awhile to

do things.

If you had to do it all over again, would there be anything you would do differently?

I am not sure what I could have done differently. After she was born, I blamed myself for a lot. I

ended up getting therapy so I could move through those emotions. I wished I would have prepared

more for the NICU and what it was going to be like, but at the time I really didn’t understand what

was happening. You can’t prepare yourself for having your heart broken so completely. The only

way to do that is to not take the risk and that is not something I would have wanted to do.

What would be your advice to another mother who is about to face the same journey you

experienced with Lucy?

Doctors are going to tell you things and they are basing it on science and studies, which is good, but

it doesn’t always represent what your child will do. Also, when you hear all the things your child

may not do, it’s easy to forget that you will still have an amazing kid that you will get to know every

day and who will do amazing things!

Call me, we’ll talk! Really though, reach out to others in the community, through therapists, Early

Intervention, Facebook, Bee Mighty, etc. Their stories will not be exactly like yours, but when you

see that they are living their “new normal” lives and that they love the little ones unconditionally,

you will realize you can do it too.

What is Lucy like today?

Lucy is amazing! She is in full day preschool and loves it! She is learning her letters and some sign

language. She loves being read to, watching Peppa Pig and play cooking in her kitchen. Her

receptive language is her biggest strength and she really understands what is being said to her. Her

gross motor has progressed much more slowly. She will be getting a walker soon and can take steps

with assistance. She loves to eat and can eat pureed foods, but is on a feeding tube for all liquids due

to silent aspiration. She loves to smile and laugh and lights up a room. I am so lucky to be her mom.

How has Bee Mighty impacted your journey with Lucy?

I first heard about Bee Mighty while visiting our ABM therapist in Black Mountain, NC. About this

time, we found a private Speech therapist and PT that we loved, but the copays with our insurance

was $52 a session. We were paying a $104 a week in copays. My husband applied with Bee Mighty

and we ended up getting funded for both therapies for a year. It was a huge help and Lucy has made

so many gains thanks to these therapies. She is about to start using a walker, can eat fork-mashed

foods and communicate using signs and picture cards. We are so thankful for Bee Mighty!