Gallery of Hope

Medical City Children's Hospital
Emma's first home

Emma was born at Medical City Children's Hospital in Dallas. On May 19th, we attended the first neonatal intensive care unit (NICU) Reunion since she was born. The reunion is held every year as an opportunity for children that have spent time in the NICU to come back and see the people that helped them at the beginning of their journeys and show them the progress they have made. There are activities of all kinds addressing all levels of abilities so that every child can enjoy themselves at the reunion. It was uplifting ad inspiring to see other children working to overcome their challenges with their supportive parents encouraging them every step of the way. Knowing you're not alone is a concept that is hard to grasp, but seeing you're not alone is tangible and means so much more. While we were there, I saw someone that had been instrumental to me during the weeks leading up to Emma's birth. As the Fetal Programs Manager, she coordinated my care and the care of Emma from the day she was born. She was responsible for making sure all the correct doctors for both of us were present and accounted for on the big day. She also had a contingency plan worked out to coordinate the transfer for both of us should anything happen that would inhibit our ability to make it there on our own. Inspired by her personal strength, I believed I could walk down the path before me under my own power if I could just open my eyes and see the strength the journey would require within.

Strength is sometimes an elusive characteristic. Until tested, a person may not fully be aware of the strength they possess; as was the case when I finally realized I was going to be a single mother to a beautiful baby girl who would need my strength more than most daughters need the strength of their mother. She was going to need me to fight for her when she needed me to, but also have the restraint to let her fight for herself when she needed to. Emma would need me to ask the tough questions of the nurses, doctors, and surgeons that were working together to give her the best chance at attaining her future goals, and to make sure that there weren't any other opportunities left overlooked. She was going to need me far more than any other person I knew, or would ever know, for the rest of my life. The truth is though, I would end up needing her far more than she would need me.

I must, in good conscious, admit this experience is not just for my daughter. I thrive when I can see a person's demeanor change for the better; knowing I helped them see something good in themselves they may not have found on their own. I feel best about myself when I am helping others. It is one of my characteristics that shines bright enough that it can't be concealed - not that I would want to, as it is a great part of why I am proud of who I am. However, being selfless can be a character flaw if you don't stand up for yourself - and that has always been my challenge. After having Emma, my personal experiences gave me a new sense of strength and raised the bar for how I would allow myself to be treated. In the past, I was willing to accept less; hoping that people would change and see the error of their ways. That mentality allowed me to believe that less and less was still enough, and over time my bright personality, which had always made me so proud, began to lose its luster. I had lowered my standards without even noticing and had no one to blame but myself. When I started the transition into parenthood and my maternal instincts kicked in (I should say kicked in more as I've always been very maternal), I realized that while I was correct in expecting so much for my daughter, I needed to reevaluate what my expectations were for myself. When you expect more and hold yourself and others to higher standards, the people worth your time will rise to meet them.

Sticker from her 18 month check-up

Emma is now 18 months old and she has shown me more strength than I have seen any other person possess before years of experiences challenged them, hurt them, stretched them, and molded them into an adult capable of being self-sufficient. I consider the people I am comparing her to my peers, and they are people I look up to and respect. Emma may not be my peer, but at only 32.25 inches tall, I still look up to her. The strength she has shown is something I feel others could see and admire if only given the chance. So when I was asked at the NICU reunion if I'd be willing to have Emma's story on their website, I saw it as the perfect opportunity to start helping others as well as help ourselves. The Fetal Programs Manager wanted me to not only tell Emma's story, but also explain why we chose Medical City and what our experience was like. She wanted other parents, who were struggling to see that they weren't alone, to hear stories like Emma's; a story that could encourage them to believe that more is possible than they might imagine.

I believe the first entry of this blog gives a good synopsis of Emma's story. As for why I chose Medical City, the answer is simple: I chose Medical City based on the advice of Emma's neurosurgeon. During our consultation on November 12th of 2010, he stated that, of the two hospitals that he could perform Emma's surgery, he recommended going to Medical City for a planned C-section. After hearing this, I called to schedule a tour of the hospital to see for myself the capabilities of the facility for both Emma and I. On December 30th of 2010, my step-mom took me in for a visit (since I was on full bed rest) and I was shown around in a wheel chair so we could see as much as possible without any additional risk to Emma or myself. While giving me a tour of Medical City, the Fetal Programs Manager was very informative, but more importantly she was calming and reassuring. I felt at ease and comfortable placing our lives in the hands of those employed at Medical City Children's Hospital. Next, it was time to meet the doctor that would be performing my C-section. On January 10th of 2011, when I was 34 weeks pregnant, I had my first consultation with the man that would eventually deliver Emma. The man's skills spoke for themselves; his practice handles all of the high risk cases for Medical City Children's Hospital, including conjoined twins, babies with heart abnormalities, and those born with hydrocephalus. He had more experience delivering babies like Emma than any other Ob-Gyn that I had seen or spoken to. He displayed many traits that were reassuring to me, but the one that stood out above all the rest was his sense of humor - it was slightly off kilter and right up my alley. My step-mom and I instantly felt a level of comfort with him that gave us both the confidence to trust him to do what was needed on the big day. I knew he would give Emma and me the best chance at a life together.

On the day Emma was born, I went in knowing my doctor would perform a trans-abdominal Caesarian surgery that would leave an elongated scar due to the size of my daughter's enlarged head. What none of us knew, prior to that day, was how much more slicing and dicing would be required to get Emma out. They made the trans-abdominal incision on my uterus, but she wasn't ready to venture out into the world - so they made it wider, and she still resisted. Then the surgeon made both the trans-abdominal and classic incisions on my uterus to make the opening larger still... but she wouldn't budge. Finally, the scalpel cut through all the fascia of my abdominal cavity and the nurses pulled the muscles back like drapes. When Emma still wouldn't come out, they had to resort to plain-old elbow grease. The anesthesiologist eventually had to press down on my chest in a desperate attempt to encourage her to come out; it was one of the most scary and painful moments in my life. It took nine minutes in all, but as soon as she was out, I felt immediate relief from the pressure on my lungs which allowed me to breathe deeper than I had in months. Still trying to catch my breath, I remember asking my sister if Emma was alright. She assured me that Emma was fine. My sister took my camera and snapped a couple pictures of the nurses cleaning up Emma. I got to see my daughter's face for only a moment before the nurses took her off to the NICU, but just that moment gave me instant relief. I knew Emma was alright and in the best hands possible. Once they had me stapled up (22 staples - one for every inch of her birth length) and in my room, waters began to get rougher for me. I experienced some complications due to the extra cutting required to get Emma out, although I don't remember much of the first day and a half after the surgery - other than the constant pain. I do know I was wheeled up to the NICU and got to hold Emma because there are pictures of me holding her for the first time, but sadly I have no memory of the experience. At some point on the second day, my nurse, who had been taking care of me during the daytime shift, was talking to other nurses and doctors about my condition because she feared something was wrong. She was an amazing advocate for me, and inevitably got the attention of a doctor who concluded that I desperately needed more blood. I was given two full units of blood while they waited to see if that would be enough for my body to take over again. Luckily, I didn't need any more than that. After the first unit was in, I felt functional again, and after the second, I felt some of my strength return. I am eternally grateful to all the kind nurses and doctors that took care of me; they helped me at a time that I couldn't help myself. The fact that their attentiveness and diligence saved my life is just one more reason I'm grateful I decided to have Emma at Medical City Children's Hospital.

I was finally released to go home after a long week, but I wouldn't be allowed to drive for several more weeks, as the pain medication I was on was too strong to operate heavy machinery. I now had to depend on others to take me to and from the hospital everyday so I could see Emma and bring her breast milk. Luckily Emma and I have a wonderful family and amazing friends that were happy to help. Not only would they take turns giving me rides, but they also coordinated those rides amongst themselves and emailed me the list so I'd know who was going to be coming each day and when. It was incredibly hard to leave Emma at the hospital each night to go home, but I had to remind myself that she was in the best of care and needed time in the NICU to get stronger. I knew she would come home with me; I just had to be patient and let her get there on her own time.

In the meantime, I would spend my days at the NICU holding her, singing to her, and telling her stories. I watched her nurses and OTs closely and asked many questions so that I could learn from the best how to care for my little bundle of joy. Eventually, I was given the opportunity to take over her primary care while I was at the hospital so I could gain valuable experience under the nurses' guidance. Learning how to help Emma drink from a bottle was the only part that made me nervous. I could see how hard she was working to learn how to drink with her OTs, and I wanted to do everything I could to help her continue improving. In the beginning, she was working once a day to consume only a few cubic centimeters of thickened breast milk from a bottle. She had to have a combination of chin and cheek support to help teach her how to manipulate her mouth and suck on the nipple correctly. Emma also needed help understanding she needed to keep sucking. She had to be given stimulation from the nipple of the bottle on her tongue and roof of her mouth to remind her to keep her sucking. Over time, she began drinking small amounts of each of her eight daily meals by bottle. Whatever she could not finish by bottle was fed to her through the tube that went in through her nose and down into her stomach. On March 4th of 2011, I was told she would be able to go home the next day if she could handle all of her meals by bottle over the next twenty-four hours. I was given the opportunity to spend the entire night with her in the NICU so I could take on all of her responsibilities and see how we did as a team. It was one of the best nights of my life because I was there to watch her achieve a new milestone for the first time - no feeding tube for 24 hours. The next day, she had one last challenge to pass - her car seat test. She did that one easily and even slept through most of it. All of Emma's hard work paid off and she was finally able to come home with me. The day Emma came home revealed the main reason I'm grateful that she was born at Medical City Children's Hospital. During her month stay in the NICU, I saw many babies struggle to survive and some parents simply lost in fear as to what they could do to help their fragile children. Through it all, the nurses and OTs were always available and supportive. They encouraged the parents to be involved as much as possible while maintaining the safety of their children. Most importantly, they helped Emma and me get to a point that we could handle things on our own; having her home with me was, by far, the biggest accomplishment I had experienced to date.

On the day of the photo shoot for the Gallery of Hope, I became excited as I thought about the opportunity to share my experience with Emma. I knew that we would be sharing her story with others that might find hope in their own lives after hearing how well she is doing and how far she has come. What I didn't know, however, was just how many people would see and hear her story. I thought the Gallery of Hope was something done by the hospital for their facility alone. I later learned, from the photographer, that it was so much more. She told me that the best pictures taken that day would be put on a canvas with Emma's story written and displayed on an easel in Children's Hospitals all across Texas. The gallery would travel from hospital to hospital, and even spend some time in the state Capitol. It was scary for me to think about how much more publicity Emma and I would receive from this, because being candid about this much of my personal life is far, far outside of my comfort zone.

I only recently started this blog after reading the blog of another mother, whose story about her son I found so inspiring. I figured if her story could move me the way it did, then maybe Emma's story could help inspire someone else. I took an enormous personal-step forward by starting this, and thought I was taking a smaller second step by being involved with the Gallery of Hope. It turned out that the second step is much larger than the first, but it will also be a way for Emma's story to have a direct impact on those that can relate the most to both her struggles and mine. I also told the photographer that she could refer to this blog to help tell Emma's story - something I would normally be hesitant about. So instead of taking two steps forward followed by one step back, I have made three large steps in a positive direction for myself. I believe the portraits will be unveiled on October 25th, at an invitation-only event, but as soon as I get word as to when her portrait will be on display at Medical City Children's Hospital, I will announce it here.

Hawaii

~*~*~*~ KONA ~*~*~*~

My favorite sunset picture I took on the entire trip.

Day one: Will there be snakes on the plane? (7/22)

The day started with my favorite Starbucks breakfast; followed by double, and then triple checking, the bags I packed to make sure I wouldn't forget anything... and yet despite my efforts, I ALWAYS forget something. It's fun to discover what I forget each time I travel, because sometimes it's insignificant and others it's detrimental. Luckily it was only my headphones this time - something that is easy to replace when you're going to an airport. I had a suitcase for me, a bigger one for Emma, my roller carry on with all my travel documents and electronics, Emma's diaper bag, and a purse. Add to that a stroller, her Childrite seat, and of course Emma. Having only two hands just seems humorous when looking at all of the things needed for our week-long family vacation. Traveling with children is work because you leave all of the accoutrements at home that make your life easier (like the crib, changing table, bath chair, etc.).

Luckily for me, I had a spare set of hands to help. My family paid to have a nanny for the trip to help me out with Emma, and also to help my sister and her husband with their daughter who is four months older than Emma. This nanny has helped me with Emma before, and loves her dearly, so her kind spirit was a welcome relief after seeing the massive amount of stuff we would be traveling with.

We arrived at the airport and went to the security line after checking our bags and getting our tickets - FIRST CLASS!!! This was the nanny's first flight, and my first time to travel with Emma, so it was a little rough. We had four bins, two bags, the chair, and stroller to put through the x-ray machine. Once we were done and at the terminal, I went to buy some headphones for myself and bottled water for feeding Emma on the plane. Next, we boarded the plane. My sister and her family were a couple rows in front, and my uncle was seated next to us (Emma shared my seat). The first flight was about eight hours long, and would prove to be a true testament of Emma's calm and happy personality.

While getting ready for take off, Emma had to do a full inspection of everything.

Once we were situated in our seat, Emma had some baby food. Then, she drank a bottle of formula during take-off to (hopefully) help pop her ears and equalize the pressure. The new noises of the plane were a little startling to her, but she was happy to continue drinking her bottle. Fast forward eight hours, three diaper changes in a tiny airplane bathroom, a two hour nap for Emma, and lots of talking - and we touched down in Honolulu. I must say that Emma did beautifully on the flight. I was so proud of her, and also relieved, as was my uncle sitting next to us for those eight hours.

Next, we were on to a short flight from O'ahu to our final destination on Hawai'i. After the second flight, we loaded up the rental car with all Emma's gear and made our way to the room where we were staying so she could eat and be put down for the night. It was a long day for such a little baby, but we followed the advice of her pediatrician so that she'd adjust to the five-hour time change as quickly as possible. I'm looking forward to letting her sleep on the flight back; it will be so much easier than keeping her entertained and awake for over thirteen hours of travel, six of which were after her normal bedtime. I'm so lucky she is always so sweet and happy!

Day two: Just keep swimming! (7/23)

I woke up around 6:30 AM local time and Emma was still asleep next to me. The little wiggle-bug woke me up a couple times during the night, but she did so well adjusting to the five-hour time difference that I was happy to wake up each time to see she was still sleeping. I got up and went out to see the view from my room for the first time, since it was pitch dark when we arrived. Absolutely beautiful! After taking a few pictures, I heard a happy, talking baby start to stir. After we both had breakfast, it was time to unpack and get cleaned up for the day. Once Emma had her cereal it was time to stock up on food. Emma's nanny, Emma, and I loaded up and went to the little grocery store. We only bought breakfast and lunch items for the week since I knew, for the most part, dinner would be spent as a family each night.

Once back, it was lunch time. My sister's husband woke up early and was not feeling well, so he was napping while the girls got together and I made macaroni and cheese. It was nice to get the cousins together and see them talk to each other. Emma will happily say her name any time you try to get her to say any word. Her cousin recently learned how to say "Emma" as well, so it was cute to hear them both saying it back and forth.

After lunch had settled, it was time to feel the sand between our toes! My sister and her family joined us at the beach and we got the girls wet. They both seemed to enjoy the water hitting their feet as they sat on the edge of the wet sand. We didn't stay long because Emma had yet to take a nap and she was about to crash (and did so in my arms while walking back to the car). Back to the room and a quick rinse-off for everyone to get the sand out of...all the usual places. After the bath, Emma wasn't tired so we played with the toys I brought for her. After snack time we relaxed on the patio; enjoying our front row seats to the view and sounds of the ocean.

My little beach baby playing with the waves.

Dinner time was at 6:00 PM at the pavilion next to my grandparent's room. My dad grilled steaks, potatoes, and asparagus. After the delicious meal, I snapped a couple quick pictures of the sunset before feeding Emma her dinner. She was so tired she fell asleep during her bottle of milk after the cereal. We wished everyone else a good night, came back to the room where I put Emma down to sleep, and then went to bed myself - she wasn't the only person that wanted to crash.

Day three: Ice cream Kona. (7/24)

Four AM came way too quickly for me, but not for Emma. She was happy to be awake and wanted to tell me all about it. After changing her diaper and removing her helmet to check her shunt, I grabbed her morning bottle and a box of cereal, and took them back to bed. We had breakfast in bed and snuggled as she told me stories about her Hawaiian adventures. After a long, slow morning, we got ready to go to Kona with the family. This meant more stroller time for Emma - something she is still adjusting to. She has never been a fan of riding in any stroller, especially if the ride gets bumpy. She would go into "mermaid" pose immediately when the captain would illuminate the "Fasten Seat Belt" sign. Her "mermaid" pose is when she crosses her legs and locks them stiff, straightens her arms out and locks them too, and tilts her head slightly as she strains - turning her face red. This is how she expresses she is uncomfortable or unhappy for any reason (wet diaper, hungry, hot, uncomfortable, etc.).

We left for Kona around 10:15 AM; right after Emma finished her cereal and milk. We were planning on eating lunch in town at the Kona Inn Restaurant in the local shops. Emma did very well in her stroller, but did get a little warm a couple of times, so I got her out and carried her. Seeing my uncle push her stroller was priceless, but I must admit I was grateful. After lunch with the family, it was almost time to head back to the room, but we had to make a quick stop to get a henna tattoo before leaving: Dumbo on the back of my left shoulder - I'm a huge Disney fan that loves elephants. In fact, Emma's room is blue and full of elephants of all colors and sizes.

Once back, there was a short nap followed by snack time. Then, it was time for Emma and her cousin to have their first play date without any stinking parents. My sister and I joined the rest of the adults in the family for dinner, while the girls stayed behind to play with Emma's nanny. After a long dinner, I was back with my baby girl - snuggled up in bed for the night.

After playing hard while the parents were away, the cousins were exhausted.

Day four: Spinner dolphins in calm waters. (7/25)

Emma enjoying her morning nap.

Watching the dolphins on the patio and talking about the ocean.

Today was a day to relax, listen to the ocean, watch the beauty around us, and just be a sponge. We enjoyed some French toast with my sister and her family, after which Emma and I watched spinner dolphins for almost an hour. We played and worked on her therapy a bit more intensely then we had the other days, as I had backed off a little since we had so much to adjust to with traveling. She worked really hard and made her mommy proud. The rest of the day was Emma and Mommy time that I needed.

Day five: Laughter is the BEST medicine! (7/26)

This morning, after her bottle, Emma had the bath we didn't do the night before. While I was rubbing lotion all over her, as I do after every bath, she did something she had never done before - she laughed! After my cheeks were as wet as she was, I went to grab my phone to record the beautiful sound that was filling me with tears of joy. I'm happy to say I have about a two-minute audio recording of her laughter that I've sent to many friends and family. It's been great to share this little accomplishment of hers that still doesn't seem so little to me (and probably never will).

Every time I see Emma accomplish something new, no matter what it is, it means so much to me. Admittedly, I'm a sappy person. I cry over those awful anti-animal-abuse commercials on a regular basis, but I'm rarely moved enough to have happy tears. Before Emma, I could count on one hand (with fingers to spare) how many times I've shed happy tears in my life. Since Emma, that number has grown exponentially. She inspires me to strive for more, and to not accept less from myself and others when it comes to caring for her. The pride I have in seeing her develop and continue to grow is just something I don't feel words can do justice. I'm sure every mother feels that way about their pride and joy; I just can't imagine my life before her being as satisfying as I thought it was. I thought I was happy and that the life I had was enough, but she has shown me a love that knows no bounds - one I will strive to attain with those that matter most in my life. She has opened my eyes and shown me I am a better person than I would otherwise give myself credit for. I am proud of who I am, and I want to inspire her to be the best person she can be, if only so that she can experience the pride I feel for her.

Day six: Waterfalls by helicopter. (7/27)

This morning, Emma woke me up with the sweet sound of her laughing. I reached over to snuggle with her in her little fort (I took all the decorative pillows and placed them under the sheets all around the edge of the bed, other than where I'd sleep, so she'd have plenty of wiggle room) only to find a wet baby and bed. She had tricked me... why does she have to be so stinking cute?

After she had her bath, I had a shower, and the bed had new linens, it was time to actually snuggle. Once it was time to play, I went to get her dressed for the day. My grandmother had bought Emma a dress specifically for this trip and I thought today would be a good day for it. I always tell everyone to be mindful picking clothes out for her - she needs elastic neck lines or ones that have buttons or snaps so that they can fit over her head. Well, this dress had a single button and extended a little wider when undone, but it still wasn't enough to accommodate her head. Tried to put it on from the bottom and it was too small for her chest. I felt bad cutting such a pretty dress, but I'd have to if she was going to wear it. I ended up cutting a one-inch slit where the button was, making that hole bigger, and was then able to get it over her head. I must say, it does look really cute.

Next, we enjoyed some sitting and playing with her toys on the patio (which is my sneaky way to do her therapy work with her) until it was cereal time. Now that she seemed to be adjusted to the time change, I added graham cracker crumbles back in to her cereal. We are still working on textures and chewing up more solid foods. She still isn't a fan, but she's doing so much better these days and she ate all of her cereal - even with the crumbs.

Then it was time to visit with some family (including the grandma that bought her the adorable dress - which worked out nicely). Once my belly told me it was lunch time, we came back to our room so I could eat and then feed Emma. After lunch, the cousins got to nap together with the nanny while the adults went on a helicopter tour of the waterfalls of Kona courtesy of my wonderful grandfather. It was absolutely breath taking. After we landed, my dad and stepmom bought the girls little teddy bear pilots as souvenirs. I love my family!

Day seven: Shopping with the girls. (7/28)

My sister, her daughter, the nanny, Emma, and I had an afternoon of shopping for souvenirs to bring home for friends and family. It was mostly just time with the girls to me. I love my sister and niece, and love seeing how my sister responds to her daughter. She has a softer side that few see so it's nice to see the comfort she gives her daughter and the level of patience she has with her every day.

However, it is still hard at times to see the differences between my niece and my daughter. For example, today at lunch my niece was in a high chair provided by the restaurant, and she ate chicken from the kid's menu off a normal fork; both without any trouble. She also enjoyed coloring her children's menu, sharing her crayons with her mom when asked for one by color, then putting her crayons back in the box when she was done. Emma, who is still working on sitting, was in my lap when it was time for her to eat and the nanny was feeding her a jar of stage three baby food. Emma was not in the best mood and was struggling with the basic skills that my niece had done without any focus on her food.

I can't help but wish I could do something more to ease some of Emma's challenges, but I know that I'm doing everything I possibly can to help her. I just have to be patient and be ready for her to make the steps on her own time, just like laughing; something I've been wanting for well over a year, and finally have the joy of hearing her express herself. I can't wait for her to make eye contact with me, extend her arms out for me to pick her up, and perhaps even say "mama up". I know we will get there, and every moment she learns something new will be special, but it's hard at times to keep my optimism in check.

Nap time after a day of fun with the girls in Kona.

Day eight: You can pick your boogers, but you can't pick your family. (7/29)

Waking up to Emma in the morning is always fun...

I'm happy to say, that despite all the unique idiosyncrasies my family has that make me want to pull my hair out at times, I wouldn't trade them for anything. My family really is a family. Through thick and thin, I know I can always count on them to be there if I ever needed anything. And even when I don't need it, they come through by giving me the opportunity to take some time with my daughter on a beautiful vacation to really enjoy being a mom. It's really easy to lose some of that focus during the every day grind of working five days a week. I could have just as easily been working this week and missed my daughter's first laugh. I still would have been proud and excited, but I also would have been upset to have missed it.

I must say I'm so grateful Emma and I had this chance to come to Hawaii. It has reminded me how much I enjoy exploring and seeing different places. I need to make it a priority to do a trip with Emma at least once a year - even if it's just a little getaway close to home. I love my memories of the experiences I've had traveling growing up, and I want her to have those same kinds of memories.

Emma and I spent most of the afternoon with my grandparents (who's 50th wedding anniversary was the reason the family went on the big vacation to celebrate) watching how they function as a couple. For both of them, this is their second marriage, and it gives me hope that I can do better the second time around. Time to go make more memories! Then it's back on a plane to begin our journey home.

Day nine: Snuggle time. (7/30)

At the end of the first flight getting ready to land, someone finally woke up.

The flight started 10 PM Hawaii time, and after a layover in LA, we arrived at home just after lunchtime. It sure didn't feel like lunchtime to me, as I was awake and busy being Emma's pillow on both plane rides while my little cupcake slept. I find myself doing everything in my power to get Emma to laugh because it is the sweetest sound I've heard in a long time. Thankfully, she happily obliges me most of the time and I always get chills. I love being Emma's mom!

My Little Cupcake

My daughter, Emma Lee, was born two weeks early on February 7th of 2011. At ten pounds-five ounces and twenty-two inches long, she was definitely not a preemie like most of her neighbors in the neonatal intensive care unit (NICU) at Children's Medical Center. On October 5th of 2010, when I was 20 weeks pregnant, she had been diagnosed with hydrocephalus (also known as "water on the brain"). When the big day came, I had a planned c-section on a date of my choosing at Medical City where I knew we both would be in the best care. The surgery was not your normal caesarean birth, but I made it through with the support of my sister stroking my forehead and hair telling me over and over, "You're doing so good. I'm so proud of you."


I wasn't the only one to go under the knife while we were there; when she was just two days old, Emma had brain surgery. The neurosurgeon inserted a Ventriculoperitoneal (VP) shunt to bypass the blockage and drain the excess cerebrospinal fluid (CSF) from her brain down to her abdominal cavity. The shunt relieved the buildup of excess fluid and lowered the pressure inside her head back down to normal. When all was said and done, she'd lost over a pound and a half of CSF that had built up in utero. Unfortunately, however, the high level of cranial pressure she endured before she was born resulted in her brain being restricted from fully developing. That caused developmental delays with several normal functions - motor skills (both gross and fine), vision, eating, etc. During her time in the NICU, she was also found to have a ventricular septal defect (VSD) - a hole in her heart. Needless to say, Emma has been a very popular baby with her doctors, nurses, and surgeons at Children's.


Emma came home from the NICU on March 5th, 2011. That day was the first day she had bottle-fed all of her meals without having to be fed anything through a tube. It was an exciting feat, but one she and I would now have to be able to replicate every day on our own moving forward. I knew she could do it. Emma had been so strong since she was born, and had already been through so much, I just had to summon up the strength to rise to the challenge with her. There are really no books like What to Expect the First Year for parents of children with special needs because every child is different and so are their needs. I would have to depend on Emma's medical team to help keep me educated and prepared. Being the eternal optimist, I dove in head first with all my charts to track everything the nurses in the NICU had trained me to and knew it wasn't a matter of "how were we going to do this" but "we will figure this out, one day at a time." Emma and I were going to figure out how to make our lives the best we possibly could.


Emma has many people in her life supporting her growth and development on a routine basis. She has a Pediatrician, Developmental Pediatrician, Pediatric Neurosurgeon, Pediatric Cardiologist, Pediatric Ophthalmologist, Pediatric Ear Nose & Throat (ENT), Occupational Therapist (OT), and Vision Impairment Therapist (VI). She also has been in a cranial remolding orthosis, also called a STARband or "helmet", since she was three months old. This earned her the nickname "Baby Stig", a reference to the popular BBC Television show Top Gear. Emma is currently in her third helmet, as she just kept out growing them, but soon she will be phased out of this one as well. The treatment has made such a large impact that I'm eternally grateful this technology exists. All of her doctors and therapists have been so impressed with her positive attitude and desire to learn. It is inspiring to see her so happy so much of the time when she is working so hard to learn tasks that many take for granted just as I used to before I had Emma.


For the first couple months after she left the hospital, I was lucky enough to be home with Emma. It's a good thing too, as she had a very full dance card, with anywhere from one to four appointments every week. Although it was hard to keep my head on straight, my trusty iPhone had all of her appointments on the calendar and would remind me where we were headed that day. Overwhelming as it was, Emma never seemed bothered by all of the time spent packing her up and traveling all over Dallas to see her numerous doctors. I am very grateful that her therapists all come to my house for her sessions - they are through the local school district and are absolutely wonderful. It was nice to have someone come to us some of the time, and really made a difference in my schedule as I knew I would be going back to work when she was three months old. She started working with her OT once a week before she was even two months old. Then, we added VI therapy when she was seven months old twice a month. When we added the VI therapy, we also added two additional sessions each month with her OT. This meant Emma had about eight therapies every month. She is still on this schedule today, but we will be adding Physical Therapy (PT) and Speech Therapy as she gets older and begins to need that support as well.


Emma's first challenge when she came home was progressing enough in her eating abilities to graduate off of using Simply Thick - a clear, tasteless gel used to thicken her breast milk and formula so that she could drink it without risk of aspirating. She did just that on June 15th, 2011 after she had a swallow study done at Baylor Medical Plaza in Grapevine. First, they watched her drink liquids with various amounts of thickener, all the way down to straight formula, while she was hooked up to an x-ray machine. Then came the ultimate test - green beans. She had never had any baby food before so it was a taste she wasn't sure of, but she did get a little bit down without any struggle other than with the new foreign flavor. That meant it was now time for us to try baby cereal at home. This was not only a challenge because she wasn't really a fan of the cereal, but Emma was not able to sit or hold her head up on her own yet. Looking back, it's hard to believe that with how messy and difficult it was when we started that she loves cereal the most now.


Another challenge Emma faced was she was highly prone to ear infections. Sometimes, when someone is born with hydrocephalus like Emma, the ear canals are not shaped normally. They were stretched during development in utero, and after the shunt surgery got coiled up in a way that makes it hard to drain. After battling busted ear drums and constant ear infections for months, she finally reached six months old (the youngest they allow children to have tubes put in their ears). On August 9th, 2011 Emma underwent her second surgery at Children's. This surgery took less than 15 minutes from the time she left my sight to when I was brought to her bedside in recovery, but those 15 minutes have made a huge difference. She has only had one ear infection since, and that was from a Respiratory Syncytial Virus (RSV) infection which she got October 13th that same year.


The main physical challenges that we focused on in the beginning were her gross motor skills. She has very low muscle tone and a slightly enlarged head due to her condition, so it makes head control, balance, rolling over, and sitting much more difficult. Emma has always preferred to be on her back over her belly, but with encouragement (occasionally in the form of one of her favorite teether at that time; my finger, the teething ring, or "Ducky") she became proficient at rolling as long as someone could help her figure out what to do with those seemingly strange appendages that sprouted from her shoulders. It took over seven months before Emma had the strength to hold her head up for about a minute when she was supported by her trunk and wasn't wearing her helmet. Once her head control improved, we began to work on supported sitting. She can now sit for approximately fifteen seconds on her own before she either loses her balance or her desire to sit, but she still prefers to lie on her back and play with her hands and feet.


But I feel the challenge that has been the most trying emotionally has been her vision. Seeing your surroundings is such an overlooked ability, that until you are faced with someone that can't, you really don't appreciate it enough. To make eye contact with your child and see their face light up because they recognize you, and are genuinely happy to see you, is something I am yet to experience with my daughter. Her Pediatric Ophthalmologist confirmed on July 14th of 2011 that her optical nerves were intact, but we would have to wait and see if her brain would develop in a manner that would allow her to utilize her eyes in any way. It wasn't until she was a year old that Emma began to show signs of sight. She would reach for lighted toys that made no noise, and although she still isn't tracking with her eyes, she has recently started following lighted items with her head and reaching for them as they move across her field of view. There is no eye contact yet, but I know she'll get there one day soon.


Emma has been progressing so well with only a few setbacks. When she was diagnosed with RSV, she had to have breathing treatments several times a day for months. She also had strep throat on January 27th of 2012 shortly after she finally seemed to be almost full strength again after the RSV. She has struggled with congestion since she was very young, but is now on Nasonex daily and that seems to have done the trick. So, if you saw her now, Emma would be a happy seventeen month-old gem that you probably wouldn't notice is all that different from other children her age. You might notice the beautiful smile full of teeth, hear her say her name, or perhaps you'd just see a child with a slightly larger head that isn't sitting on her own yet. But no matter what you see when you look at her, I guarantee you your heart will melt when you hold her - mine does every time.