Rick and I are here to share with you our daughter Emiline’s story. Emiline was born and went to be with the Lord on March 28th. She stayed in our arms for one hour and ten minutes but truly her story does not begin there. As with all of us it began 9 months earlier. She was the eighth child to bless our home and as an OB nurse I was very familiar with the pregnant condition. As such I generally opt for the lowest amount of interventions possible. I forego all genetic testing and generally don’t get an early ultrasound if it isn’t medically needed. But this pregnancy seemed to be progressing differently. By the time I was thirty weeks along patients at work that we were delivering were asking me “Well when are you going in?” this was the end of December. When I responded not until April without fail they would look at me with wide eyed bewilderment and ask me if I had twins in there. At only 5ft tall I am accustomed to resembling a pumpkin by the time the baby is due, but this was certainly too early for that. I became concerned and called my Midwife requesting an ultrasound. I brought my husband with for that appointment, not wanting to face the news of “twins” alone. Little did we know at that time how lucky we would have been to get that diagnosis. Instead we received a bulgy eyed look from the OB GYN and all his cohorts and a quik trip down to MN perinatology. Apparently our little girl had lungs the size of butterfly wings atop her heart and an abdomen that was so filled with fluid it resembled mine. The official diagnosis was fetal-hydrops, basically a fancy term for a tremendous amount of water in her thoracic cavity and abdomen as well as polyhydramnious, an abnormal condition of excess amniotic fluid. At this point we did all the testing to try and find out why with no answers to follow. All the known tests for WHY came up negative. We then did all the investigating into this strange syndrome of which we had previously never heard. The bottom line was we could do nothing medically to help her lungs grow. We had the horrible fact to face that we were carrying a child with a condition that the medical community would deem incompatible with life.
So this is what we did. We prayed a lot and implored everyone around us to do the same asking God for a miracle, knowing full well He could say yes or He could say no. I do believe that thousands more rosaries were prayed in her behalf and prayers were offered up in this cause than ever would have been with a “Normal” child’s pregnancy. And we used the time we did have to the best of our ability. Medicine could offer us no cures but it could offer time. Because of the massive amount of fluid on her belly the stretching of the uterus would have thrown me into labor prematurely. A combination of bedrest and over a dozen therapeutic amniocentesis, a procedure in which they stick a large needle into my stomach and then into hers we were able to each week take off around 2 liters of fluid off Emmy and myself and thereby kept her with us for 8weeks longer. I tried to do everything within my power to keep her from regaining the fluid, including restricting my fluid intake. I actually asked the OB GYN if he thought that would help. He said he didn’t think it would hurt, certainly underestimating the power of a mother trying desperately to save her child. It is never a good idea for a pregnant mom to fluid restrict. The effort failed miserably to keep her from gaining fluid although I could go long periods of time without needing to empty my bladder. Sadly enough whatever fluid I took in went first to her little body, and to places it did not belong.
This is what we did with that time. My children sang songs to their little sister Emmy. I fed her chocolate and fruit salad every day. We played hide and seek with her in my tummy. I hugged her and cuddled her imploring God to not take her away just yet. We had time to get to know her as her own little person appreciating each day for what it was, perhaps the last we would get to be with her.
What we did was unconventional and was certainly frowned upon by many of the medical community. In fact I have been told that a great number of people said “well why is she continuing with this? Aren’t they going to induce labor? Their answer would have been to literally abort my child for that is what an early induction with an otherwise healthy mother truly is. We would have missed so much had that been the road we followed. I would love to share some pictures that a very talented professional photographer put together for us. They hopefully will show you the beauty and preciousness that God brought to us with this little girl. Although we certainly would have preferred that God say yes to that miracle we asked for He gave us so much within that no, that we wouldn’t trade little Emiline’s life for the world. This is her message to us Life is Precious no matter how short, no matter how disabled, no matter how useful or cost effective NO MATTER WHAT!! Life is precious. I would just like to close with a favorite refrain from a Song that caught my attention one day.
We Live We Love
We Forgive and never give up
For the days we are given are gifts from above
So Today we remember to live and to love
Love your children, not because they are ‘perfect’, not because they possessions, not because they are accomplishments but because they are gifts from God in whatever packaging He chooses to send them to us, for how ever long he chooses to lend them to us.
All children are a blessing from God. Each of them a precious gift given to us to hold for a few moments in time. We hold them with open hands for only the Father knows when our moments are up. When we speak of a child we wish to hold tight, we always want more but with open hands we give back to the Lord what wasn’t really ours anyway and thank Him for the precious time He did give us.
I wish for the wisdom of God on this difficult journey you are embarking upon.
Rick and Gerri Nelson