"I found out I was pregnant on my birthday (February 5th) of 2006, which also happened to be the Superbowl..."

At the time I found out I was pregnant with Katie, I also had a 2 1/2 year old little boy named Kyle at home. We were using a nanny that came to the home instead of daycare. I worked 3 days a week in and out of skilled nursing facilities. Everything was going as planned until week 31. I went in for an ultrasound to measure the growth and development and it wasn’t a good appointment to say the least. The ultrasound tech finished her measurements and said that she was very concerned. She said that according to the dates, Katie should be measuring at 31 weeks, yet she was measuring about 4 to 6 weeks behind that. She said that she hadn’t grown much since my last ultrasound a few weeks prior. The doctors were at lunch so she was going to have them call me as soon as they returned.

The doctor called and wanted to admit me for 24 hour observation into the hospital the following morning. I signed in and was taken to; little did I know what would be my room for the next 7 days. They hooked me up to a bunch of monitors and completed Biophysical Profile tests daily. Katie had some heart decelerations throughout the next week, she kept failing her Biophysical Profile tests, and she still wasn’t gaining the weight that the doctors wanted to see, so they gave me the steroids to help develop her lungs and induced labor at exactly 32 weeks. Again, let me reiterate aside from Katie going to be a small baby, we had NO idea that anything else was wrong...until she was born.

Katelyn Grace was born August 30, 2006 at 1 pm, weighing 3 lbs. I was able to have a vaginal birth. She came out screaming. She was immediately whisked away by the team of doctors into the NICU. I was unable to hold her, although one of the nurses did hold her up for me to see, I was taken aback by the bruising all over her face. About an hour later, I was able to go in to see my baby girl. They had her little body covered in monitors and wires, they were helping her get enough oxygen with a nasal canula, and they had drawn some lab work and were waiting on the results. I spent a couple of hours with her and then went back up to my room.

The Neonatologist came to my room around 9 pm that night. He stated that it was his opinion that she was gravely sick and proceeded to tell me that her liver was three times normal size, her spleen was also enlarged, her red blood cell count was in the critically low category, her platelet count was at a dangerously low level, and that more or less we may not have very long to spend with her. He stated that he suspected a virus called Cytomegalovirus was the cause of the illness. He said that he had only treated CMV kids on two separate occasions, once the baby died a couple of days after birth and the second went onto be institutionalized after their hospital stay. He said that the accepted course of treatment for CMV was to 'watch and wait and support' until her body became strong enough to fight off the virus on its own.

Fast forward 2 1/2 months later, we are still in the NICU, we did get a positive CMV test result, and we are averaging red blood cell transfusions every other day and platelet infusions daily. Katie’s lab work came back worse and worse each day. She ended up literally on the verge of liver failure. Her liver and spleen continued to swell, nor could she keep her red blood cells or platelets from one transfusion to the next transfusion. We are so tired...tired of attempting to balance home life and hospital life...tired of being away from our other child still at home...tired of spending the holidays in the hospital...tired of watching Katie get worse and nothing be done about it. My husband, Chris jumps on the internet and does some research only to find Dr. Gail Demmler...an answer to our prayers. We go in armed with her information and talk it over with our Neonatologist and he promptly shoves her information into the back of Katie’s chart not to be taken out again until...a change in Neonatologists. Throughout those first two months, we had to beg to see specialists aside from our Neonatologist. We were able to see an Infectious Disease doctor once and he agreed to just 'wait and support', so we were there with our hands tied...just watching our daughter get worse.

We had many, many hospital issues so we decided to have a conversation with the Head of Physician Services and shockingly the next week, our Neonatologist was no longer and had been replaced...inheriting our 'hot potato'. The first thing the new Neo did was to contact Gail Demmler whom so graciously consulted from afar on Katie’s case. After 2 1.2 months, we finally got someone to understand the need for ganciclovir. Dr. Demmler also suggested drawing blood for a viral load test; of which we had not completed until now. The results were astounding. The lab stopped counting at 1 Million CMV particles...and this was at 2 1/2 months old, can you imagine if we had done this test immediately after birth?! We discussed the specifics of starting the ganciclovir...Katie was moved into an isolation room, no one could visit aside from Chris and me, and we were to wear gowns, masks, gloves, and hairnets when visiting her. More than anything the doctors were concerned about a line infection than they were about the ganciclovir. Katie went in for a central line, received her first dose, and it went off without a hitched. The next 2 months sailed so smoothly. Each day Katie’s labs looked better and better. She seemed to feel better too. Her viral load numbers kept dramatically decreasing; by the time we left they were at 250 CMV particles. She did end up needing a feeding tube because she would not take her bottles.

On January 13, 2007 after 4 1/2 months in the NICU, we were able to take Katie home. The first three years of her life, she received Physical Therapy twice a week, Occupational Therapy twice a week, Developmental Therapy once a week, and Speech Therapy once a week. Katie only ended up needing her feeding tube for 10 months, so that was removed.

Katie just celebrated her third birthday. She has started a Special needs school, where she goes 4 days a week. We are also supplementing Physical Therapy and Occupational Therapy twice a week. Katie has never had brain calcifications. Katie’s hearing continues to be perfect in both ears, her sight is still perfect (with the exception of a lazy eye), her fine motor skills are age appropriate, her verbal skills are above average, in fact the only obstacle we have currently is her lack of walking or gross motor skills. We are using a gait trainer, she wears AFOs, and we have a wheelchair/ stroller. The therapists and doctors believe that one day she will be able to walk based on the fact that she continue to meet milestones (all be it later than most kids).

We have been so blessed by this little miracle, yet I wish that no other parent would have to watch their child go through so much pain and have so many unanswered questions about the future. Her very favorite person is her brother, Kyle and he is her protector. With Katie being in the hospital for so long and Chris and I having to split up our time between the two of them, it took Kyle awhile to warm up to Katie and accept her as his sister. I try my very best to be an advocate for my daughter in my 'spare time'. In addition to Stopcmv.com, I am very involved with the March of Dimes and try to educate them about the severity of Cytomegalovirus and the need for a vaccine. I guess the frustrating part for me is that NO ONE even knows about this virus, yet you can contract it so easily. NO ONE warns you about it during your pregnancy. NO ONE understands the impact it can have on your entire life. I want my daughter to have the chances and experiences that each and every child her age has, despite her delays and differences.

- Submitted by her mother, Kelly