Peace
It was during the next few days that we planned her funeral, picked out her little white casket, and notified family members. Saturday we were scheduled to pick out her name plate. I woke up that morning with a peace that I can’t describe. I told My husband that I did not believe that Emma was going to die. He, being the wonderful husband that he is, lovingly supported me, knowing that denial is one of the many stages of grief. I looked him square in the eyes and said “No, she isn’t going to die”. We both agreed that getting a second opinion wouldn’t be a bad idea. From that point on, death was not mentioned in my presence.We scheduled an appointment with another Doctor in Orlando Florida. I am not sure of the exact date we met with him, but I remember the appointment like it was yesterday. He told us that Emma did not have Pompes, which her heart did not present as a pompe’s case, but he did not know what she had. He said that he couldn’t promise us a different outcome, but he did want to put me on Digoxin because it was thought to pass thru the placenta. He scheduled an amnio to rule out pompes (I remember thinking to myself, “Why wasn’t this done before?”). The amnio did rule out Pompe’s Disease, but left us with many unanswered questions.The odds for her being born alive were very low, but of course, as a mom, I held to that little glimmer of hope like nothing else. He told us that we had to get her to 34 weeks before we could effectively treat her outside the womb. He said she would need ECMO (heart lung bypass) if she did survive the birth, but his opinion was that she would pass before we got to that point. I asked him what we were looking at if she did beat the odds, I remember his exact words “Mrs. *****, your daughter will be severely brain damaged due to hydrops (fluid build up), for her, dying before she is born is not necessarily a bad thing, as much as it will hurt you”. I asked him if transplant was an option, he said no. I never asked why. He told me not to be heroic in her birthing plan, that it was unnecessary for me to undergo a c-section, and that we should sign DNR papers prior to her birth. We obviously disagreed.
My mother in law graciously offered to move to our state from her home to help with the other two kids during this uncertain time. She had just buried her sister, who died of cancer shortly before we found out about Emma. I am still, to this day, amazed at her willingness to help given those circumstances.
We decided that Emma should be born in Orlando, because that was where this Doctor was. We packed up our family and moved into our dear friend’s vacation home. We patiently awaited Emma impending birth. More so with fear, than excitement.My doctors visits became more frequent. We were at the children’s hospital weekly for a battery of tests. At this point Emma was receiving Echo Cardiograms 2 times a week in utero, to monitor any changes in her heart condition. I was admitted to Arnold Palmer Hospital for Women and Children at 27 weeks for permanent bed rest. By this time, Emma was almost 6 pounds, with over a pound of fluid on her body due to the continued heart failure, my amniotic fluid was abundant, and I was completely miserable at 240 pounds. The fluid build up in my uterus and on Emma was extremely alarming. By the 32nd week, the fluid was beginning to take a toll on my body. My ureters were blocked, my kidneys were backed up, and kidney failure was brought to my attention. I was urged to deliver immediately, but we had not yet reached 34 weeks, so my answer was no. I can deal with the pain, I had an obligation to my daughter, and it was a promise I was going to keep. We pressed on; marking the days off the calendar until my 34 weeks was over.
The Birth
The 34 week point came. The feelings I had were indescribable. Anticipation without excitement. Longing without Joy. Fear. I was scheduled for another Echo Cardiogram that day, along with a scan of my kidneys. Honestly, I was expecting to leave that appointment and carry Emma for a few more days, if not weeks. My kidneys disagreed. I was scheduled for an emergency C-Section. The rest is a blur, mainly due to drugs and blocking it out. I remember Mark coming from work, I was already on the table, and the drape was put up. I remember the nurse asking us if we wanted to sign DNR papers, and again we declined. It was awkward because you could tell the staff didn’t know how to act, some were acting like it was a normal delivery, while others couldn’t help but check on me and rub my arms every time they walked by. I just wanted it over, I wanted to face what was coming, and move on with life. This had taken away apart of me that I don’t think I will ever get back. Innocence was lost.The surgeon informed us that the incision had been made; he walked us thru everything he did. We had been told she wouldn’t cry when she was born, and we had prepared for our first meeting with her to be heart wrenching. We hadn’t really prepared for what actually happened.Emma proceeded to cry loudly. I honestly didn’t believe it was her that was crying. The surgeon said “Congratulations!” and handed her off to the NICU team. I remember the room getting really quiet as she stopped breathing. I remember them working on her for what seemed like forever, but was really only about 10 minutes. They ran her by me, but I don’t remember seeing her. I remember crying with Mark, and feeling hope for the first time in a long time. She was finally here. I laid there for what seemed like hours, all I could do was ask how she was. I kept asking the nurse “She was breathing, right?”. I probably asked her that 40 times. She gently smiled and answered “yes” every time. I am not sure how long it was before Mark was able to see her; they had to work on her for quite sometime. When he did see her and came back to me, he had a picture of her. I can’t describe it, seeing her for the first time. The fluid buildup was so much more than I had prepared myself for, and the tubes and cords covered every inch of her body, but I was mesmerized, this was my beautiful little girl . She had proven them all wrong.Over the next 2 weeks, many things happened. We went thru a rollercoaster of emotions. I spent hours by her bedside, stroking her little feet, holding her tiny hands. Singing to her, memorizing her. I didn’t know how to let her go. Daily something went wrong, and we prepared ourselves for the worse. I can’t describe how hard it was constantly watching your emotions go around and around. This was just the beginning of a very long and emotional journey. But we had made it to the beginning, and that was all I needed.
Continued in next post