Emily’s Story – Pediatric Stroke Awareness Month

emily2-250My husband and I always had children in our plans – it was just something we never had to discuss and knew we wanted. After being married for 3 years we decided to start trying. I was blessed with a pregnancy shortly thereafter. Late in the pregnancy the doctors started having some concerns regarding my heart and therefore scheduled a C-Section. Brooke was born in November of 2008 and we were very excited to start the adventures of parenthood! It was the day after Thanksgiving – and our life was about to change for the better! Brooke was perfect in every way. She was exactly what we had dreamt of – brown hair, brown eyes and chubby little legs. It amazed me how my body was able to create something so magical and divine. Life was perfect! So, we decided to try again!

Unlike Brooke, Emily took a bit more time to conceive. I actually started getting frustrated as Craig and I had been trying for over a year. I remember seeing pregnant women EVERYWHERE we went – envious of them and wondering why it couldn’t be me. Then in October I finally got the news we were hoping for, we were going to be adding another member to our family! The first few months of this pregnancy were easy – I felt great and the baby was doing awesome. Towards the end, the doctors started seeing a bit more fluid in my belly than normal which was making the baby’s heart rate increase. They monitored me twice a week for the last two months. Finally, we were scheduled for another C-Section. I couldn’t wait to bring her home and show her off to everyone.

Emily Rose Arrives

Emily Rose was born on June 20th, 2012 weighing in at 9lbs 15 oz. She was absolutely beautiful in every way. I cried as I held her in the operating room – again in amazement on how my body created such a majestic masterpiece. We were moved into recovery where I attempted to start breastfeeding. She wasn’t too into it and mostly just slept. But I held her tight, close to my body and treasured this exact moment in time – not knowing the windstorm that was about to begin.

Shortly after being moved into our room, Emily started making jerking movements. Craig and I just admired her assuming that she was having some really awesome dreams! After all, how many parents just assume that their newborn baby is having seizures? My nurse came into our room and immediately drew her attention away from me and towards Emily. She just stared for a minute, enough to make me wonder what was catching her eye. Before I knew it Emily was taken by the nurse to the nursery where a team of doctors evaluated her. I sent Craig to follow which left me there- in a room, all alone not knowing what was going on. I have never in my life felt like I did at that moment – a moment that I still have a hard time thinking about.

Babies Have Strokes?

Emily was then brought down to the NICU for further testing. After having a spinal tap and cat scan it was discovered that Emily survived a stroke and had moderate damage to the left side of her brain. STROKE – all I thought was that babies don’t have strokes. Stroke is a word you hear with older people. I felt like this was a bad dream and I was going to wake up soon and everything would be fine. But it wasn’t. The next 24 hours were filled with blood tests, an MRI, EEGs and every other test you can think of. Her diagnosis – cerebral palsy – manifested as a right hemiplegia and right visual field deficit secondary to a left middle cerebral artery infarction. She was also diagnosed with a seizure disorder and right extremity neonatal hypertonia. As you can imagine, Craig and I were completely devastated and heartbroken. The hardest thing for any parent is to see your child in pain and not being able to help them. She was hooked up to oxygen, an IV and a feeding tube. Emily was having 4-5 seizures an HOUR. We couldn’t hold her for the first two days as the doctors thought she had an infection. We needed to gown and glove up whenever we were near her incubator.

The next several weeks were the hardest days of our lives. We were informed that some children lead a typical life and you would never know anything happened while others have significant issues with speaking and mobility. The doctors had no idea where Emily was going to fall in the spectrum. I still remember asking one of Emily’s neurologists in the NICU what she thought the extent of Emily’s injury was going to be. She told us that she would probably have issues with walking, using her right side and speech. I started crying – a lot. As a parent you start to envision the worst and this was NOT part of my plan. Why is this happening to me, why is this happening to Emily? She is such a small innocent little baby – why does she have to go through this. Life is simply not fair.

Almost Home

After spending the majority of my time holding Emily and crying we finally got some great news on day 4 of her stay. The doctors told me I could attempt to nurse her – finally! They did not think she was going to latch and feed but I had a feeling things were going to go well. Before I knew it she was eating like a champ and they were able to pull the feeding tube! We were so happy! She was proving to us and to the doctors that she is a fighter and a strong little girl! I made sure that I was there for 14-16 hours a day as she needed me now more than ever. It was very hard waking up every morning and leaving Brooke as when I was at home I felt like I needed to be at the hospital and when I was at the hospital I felt like I needed to be home. I thank the lord everyday for the love and support of our family and friends who guided us through this time and cared for Brooke while we were with Emily. No one ever asked questions, they just were there – when we needed them most. After 8 more days of continued improvement in the NICU, several classes on how to care for a “special” child and medication overviews we were finally able to bring Emily home.

I was nervous and scared. What if I gave her the wrong dose of medicine? What if she has a seizure when she is sleeping? What if she needs me and can’t tell me? What if? What if? What if? Again I thought this is not what bringing a newborn home should be like. Why? Why me? Why us? Why Emily? I wanted to take the pain away from her and put it on me, more than one can imagine.emily3-250

Over the next couple of weeks Emily continued to show us just how strong she was. She was on two different medications to manage her seizures. She started receiving outpatient services to help her with the muscle tone in her neck and movement of her right side and started occupational therapy weekly to strengthen her muscles. She was being followed by a cardiologist, neurologist and hematologist and was part of the NICU Neurodevelopment Team at the hospital.

Fast Forward –  21 Months Old

Fast forward to now – Emily is 21 months old and overall things are GREAT! Emily is such an amazing little person whom I simply adore. Her laughter melts my heart and her dancing will put a smile on everyone’s face. She is not only walking but running around to keep up with her big sister. She depends on her left side for most fine motor activities but is starting to use her right side more and more. She is still receiving occupational therapy, physical therapy and speech therapy. She is learning sign language – as are the three of us – and is picking up on it quickly. We are so proud of her! The relationships we have built over the last year with her therapists, doctors and amazing teachers are relationships that I know will last for a very long time. We are so thankful that we have such a community of support for our little fighter.

emily1Brooke is the best big sister ever! She is now 5 years old and loves reading books to Emily. She has adapted to having another child in the family so well and we love the bond the two of them share. Brooke has had to deal with the many hours of doctors, therapists and phone calls that come with a sister who had a stroke. But, you roll with the punches and our philosophy is “It could always be worse.” Brooke hears so much of “Emmie needs her pants changed, let’s go inside; Emmie needs to eat, let’s clean up; Emmie needs her medicine, we have to leave; Emmie has an appointment, you have to sit and be quiet; Emmie has therapy, please play by yourself” and so on. But almost always Brooke comes inside, helps me give Emmie her medicine, wants to feed Emmie, changes her dolls pants as I change Emily’s and asks me lots of questions about what the doctor said on the way home. She is the first one to tell the therapists and doctors everything Emmie CAN do instead of what she can’t. She makes us late because we forgot Emily’s word book and “well, the car is the best place to practice.” She scolds me when I carry Emmie, as “Emmie needs to learn to walk” and she brings me Emmie’s shoes when we play outside so Brooke can hold her hand and show her new things. She crawls in her crib and reads Emily books and always wants to sit next to her at dinner. Brooke LOVES Emily and Brooke is an AWESOME sister!

This experience has taught us so much. We have been shown such an outpouring of love and support from our family and friends. I look back and can now ask – why not me? 99% of the time I do realize that things could be so much more difficult. I am blessed with two beautiful daughters who smile at me every morning and who love me just as much as I love them. Some days I do have pity parties and wonder if there was something I could have done differently. Why couldn’t we just have left the hospital the way I dreamt of – the plan I always had in my head of bringing our baby home? Holding your baby down while she is having an EEG procedure and screaming uncontrollably brings tears to my eyes. Wondering when she will speak her first words let alone a whole sentence still keeps me up at night. Wondering if she is just staring off in space because she is tired or if she is having another seizure makes my heart beat faster. Examining every move she makes – because now I am just scared, scared something might be wrong. Succumbing to the realization that your child is labeled as disabled took a long time – a really long time. It sucks. But this is our journey and I don’t think I could have picked a better family to enjoy it with! I know that God thought that Craig and I would care for and love Emily and Brooke – and we are so thankful for this gift.

Although our situation is difficult we appreciate the ongoing support from our family and friends. We don’t usually share our story and true feelings with many people. It is hard to connect with people who don’t really know what you are going through. So many people tell us all the time how lucky we are and how awesome Emily is – and we know this. But they aren’t the ones going to therapy every week, doctors’ appointments constantly and staying awake at night because you just worry. It is reassuring to have found the Children’s Hemiplegia and Stroke Association (CHASA), a support system of people who can relate to our situation. We plan on keeping you updated on our family and welcome the continued prayers and well wishes for Emily. We know in our hearts that she is going to grow up to be a fantastic young lady.


Craig, Tara, Brooke & Emily