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.