Hope For Harper

Nick and I were married on September 26, 2009. Nick became a stepfather on that day, to my son Jaxon, but we longed for our family to grow. After two miscarriages in two years, a positive pregnancy test on September 5, 2012 gave us another chance:) Due to our past losses, this pregnancy was something I was very nervous about. Thankfully though, each appointment showed a healthy, growing baby:) On December 28th, we found out we were having a girl. That same day we were also told that there were abnormalities showing up in the ultrasound and that she had a 5% chance of survival. One of the happiest and most devastating days of this journey.

We spent the next 2 1/2 months monitoring Harper's development with frequent doctor's appointments. We also sought out a second opinion at The University of Maryland Hospital. UofM gave us hope. Harper was measured and observed and evaluated by their amazing doctors. They were able to tell us that she was growing, her organs were functioning, and that what they were seeing did not indicate she had a 5% chance at all. Although she may have chromosome issues, Harper was very much viable, alive, and seemingly healthy♥ We returned to Geisinger with our second opinion and were advised by UofM to go through with an amniocentesis I had been struggling over consenting to. Through the amniocentesis we received a clearer answer as to what we were up against. The answer didn't change our plan for our daughter, we would do everything and anything to bring her into this world, we already loved her beyond words. The testing revealed that Harper had an unbalanced chromosome translocation of chromosomes 11 & 13. She had a duplication of chromosome 11 and a deletion of chromosome 13. This combination has never been reported. We were advised of the potential problems that could stem from each separate chromosome, but the effects of both of these together is unknown. All we could do was pray that Harper wouldn't suffer severe effects of this chromosome disorder.

As a couple, my husband and I decided to do parental testing to determine where this chromosome translocation stemmed from. There was the possibility it happened "de novo", simply meaning, out of the blue. The other possibility was that one of us was a carrier. Our intentions for going forward with the testing was solely for our children. If it were me that carried the translocation, I wanted to know for my son Jaxon. We promised one another that whatever the testing revealed, we would not hold it against one another. The testing revealed that my husband was the carrier. He carries a balanced translocation and when passed on to our daughter it became an unbalanced translocation. We finally knew why the last two years of loss and heartache happened to us and we no longer had to wonder if it was something we did. My husband continues to feel a sense of guilt, although I do my best to reassure him that it is not his fault. What we pass on to our children through our genes is not intentional, we had no idea that there was this potential. In our minds, our daughter who was growing inside of me had made it further than our other precious babies. She was strong. She was perfect in our eyes. God was giving us this child, we felt blessed. There was a reason and a purpose for our daughter.

The days until her arrival were full of stress and worry. I was carrying more amniotic fluid than was typical, therefore I was monitored closely and I was put eventually put on bed rest. On March 11th and 12th, our typically energetic baby girl was no longer moving around or kicking. I thankfully had a Doppler at home that I could use to monitor her heartbeat. It reassured myself on those days by finding and hearing her heartbeat throughout the day even though I wasn't feeling her move. On March 13th I decided that two days of no movement was too much. My husband assured me over those days that she was fine, maybe she was just sleeping. My mother's intuition told me otherwise. I urged my husband to take me to Geisinger, to at least have Harper's health checked out. We had no idea that this would be a pivotal decision for Harper and our family.

I didn't pack a bag or make any plans for Jaxon. I assumed everything would be alright and we would return home after some monitoring. Very shortly after arriving and being hooked up to the fetal monitor, I realized that something was wrong. Harper was not moving, despite the nurse and doctor's attempts. They preformed a biophysical profile on Harper. She failed, with a score of 2/10. The room immediately filled with doctors and nurses, Harper was going to be delivered immediately.

We had no time to process what was about to happen. I was able to make one phone call to my son, who was waiting in the lobby. I wanted to tell him personally what was happening and that I loved him. I knew he would be scared if he didn't hear it from me. That was a very tough moment for me. I truly wasn't sure if I would make it through the C-section. My delivery of Jaxon almost killed me and I couldn't help but be taken back to that scary time almost 10 years ago.

Via emergency C-section, Harper was born at 9:43 on March 13, 2013. She was a mere 3lbs 9.3 oz. and 15.5 inches long. She was 31 weeks 4 days, all I could do was hope that she had developed well enough to survive. I knew she was in the best place, in the hands of the best doctors who were aware of Harper's possible needs even prior to her birth. They were ready for her, I just prayed that we had done all that we could do to give her the greatest chance of success. We didn't hear her cry and she was immediately whisked away through a window to the NICU where they would work on her for the next few hours before we got to see her for the first time.

We finally got to see Harper in the early morning of March 15th once they had her stabilized. She was on a ventilator, hooked to countless monitors, catheterized through her umbilical cord, and on an IV. She was so tiny, so fragile, but so very beautiful. A true miracle before our eyes, fighting for every breath...every moment of life with her unexpected early arrival.

We had no idea at this time the up and downs we would experience in the NICU. In total, we spent 133 days in the NICU. We had many firsts as a family during that time, we tried to make the best out of our new reality. We learned to enjoy each moment of each day and to rejoice in the small victories. We stood by Harper's bed side and fought through her numerous surgeries, recoveries, tests, sicknesses, and touch and go moments where we almost lost her. A G to a G-J feeding tube, a tracheostomy, the LADD's procedure, a bowel removal and resection, a Nissen-Fundoplication, an appendectomy, a heart catheterization, EVT brain surgery, and Shunt surgery. We are currently in the PICU awaiting training and acceptance in to the home vent program so that we can go home!

Harper's journey is far from over, but we are making progress and day by day closer to bringing our sweet baby girl home. She is currently 15 pounds and over 22 inches long. She is growing, thriving, and defeating the odds one day at a time. She amazes us daily! Her will to live and the fight that she possess gives us the strength we need to get through this.

We have been surrounded by love and support by the hospital staff, family, friends, and people we have never met. I know there is always someone, somewhere saying a prayer for Harper and that is comforting. We live an hour away from the hospital and we drive there everyday to be with her. The physical, emotional, and financial strains we have endured are a small price to pay to have our daughter here on this Earth with us. We have been blessed with amazing people in our lives who have stepped and in provided us with the extra means to make our daily visits with our daughter possible. The fundraisers, gift cards, and monetary donations for our family have amazed us and we are truly blessed. We couldn't have gone through this journey without the support of the generous people in our lives. Please continue to pray for Harper and hold onto the hope that she will one day soon be home with her family♥