Saturday, June 6, 2009
The baby is now two hours away - two hours to get there, three hours sitting with her, two hours back. I hate where she is - it is loud, and busy, and crowded, and impersonal. But they claim to be one of the best NICUs, and I have to believe that she is in the best place for her needs right now. But I can hate it ... and I do ... with every fiber of my being ... Hate is a terrible thing. It saps you of energy that can be more useful if directed toward a positive goal. But I have no goal, because it is all out of my control. Her needs are not needs I can meet, and if I allow myself to dwell upon that, I will become filled with a sense of despair - almost as productive an emotion as hate.
Tuesday, June 2, 2009
On Necrotizing Enterocolitis, Med-Evac Helicopters, and the Power of Prayer ...
When we walked into the NICU yesterday afternoon, my eyes stopped immediately on the monitor that read Emma's oxygen level - 52%! I knew something was terribly wrong. When I saw the nurse's face, my fears were confirmed. She said, "Emma is not having a good day". They suspect it is Necrotizing Enterocolitis. Here is a link to help understand this disease - http://kidshealth.org/parent/medical/digestive/nec.html#
They discontinued her feeds, put an IV in, started her on TPN and fats again, and were going to start an insulin drip, but then her glucose levels fell to within normal range again. She was put on antibiotics, and just was not as responsive as she had been. She did not want to be touched. She would not hold my finger.
When the doctor came in to discuss her condition, he said St. Christopher's Hospital for Children in Philadelphia was better equipped to provide care for Emma should she develop the more severe form of this condition, and require surgery. So provisions to have her air-lifted to Philadelphia were made. A team from the other hospital flew in and took over her care. They placed my baby in what looked like a soft-sided picnic cooler, with hoses and tubes and monitors - they were polite, and professional, and kind. But they were taking my baby even further away from me. We watched the entire time, through the helicopter lifting off from the roof-top. The neonatologist who was on the flight called as soon as they landed in Philadelphia, and told us that Emma did well with the flight. She is stable. As of now, there is no sign of perforation in her bowels. There is, however, a perforation in my heart.
Through all of this, I was amazed at the number of people who told us, "I will pray for you". Even the burly security guard, who allowed us access to the rooftop to watch the helicopter take off, said, "At times like this, I believe in the power of prayer". It has been comforting and humbling to glimpse a side of humanity I have not seen outside of Church on Sunday mornings. People who believe in more than just themselves, who believe in a power greater than themselves - people who BELIEVE - are taking care of my baby. I can not ask for more than that.
They discontinued her feeds, put an IV in, started her on TPN and fats again, and were going to start an insulin drip, but then her glucose levels fell to within normal range again. She was put on antibiotics, and just was not as responsive as she had been. She did not want to be touched. She would not hold my finger.
When the doctor came in to discuss her condition, he said St. Christopher's Hospital for Children in Philadelphia was better equipped to provide care for Emma should she develop the more severe form of this condition, and require surgery. So provisions to have her air-lifted to Philadelphia were made. A team from the other hospital flew in and took over her care. They placed my baby in what looked like a soft-sided picnic cooler, with hoses and tubes and monitors - they were polite, and professional, and kind. But they were taking my baby even further away from me. We watched the entire time, through the helicopter lifting off from the roof-top. The neonatologist who was on the flight called as soon as they landed in Philadelphia, and told us that Emma did well with the flight. She is stable. As of now, there is no sign of perforation in her bowels. There is, however, a perforation in my heart.
Through all of this, I was amazed at the number of people who told us, "I will pray for you". Even the burly security guard, who allowed us access to the rooftop to watch the helicopter take off, said, "At times like this, I believe in the power of prayer". It has been comforting and humbling to glimpse a side of humanity I have not seen outside of Church on Sunday mornings. People who believe in more than just themselves, who believe in a power greater than themselves - people who BELIEVE - are taking care of my baby. I can not ask for more than that.
Friday, May 29, 2009
"Our Patience Will Be Rewarded" ...
These were the words my nine-year-old uttered as we drove home from the hospital tonight. Emma has opened her eyes, she will be on full-feeds tomorrow if she has no residuals during the night, and her IV lines will be removed if she continues to progress. She has done so well, in such a short time. I know this is far from over - but, it does seem, "our patience will be rewarded".
Tuesday, May 26, 2009
This is Emma's hand and foot next to my hand. Tiny, but perfect. Her perfection amazes me. Each day is a tense uphill battle, filled with so many possibilities of things that could go wrong. And yet she perseveres. That little heart keeps beating strongly, those tiny lungs continue to fight for life. And I long for the day when I can be on the other side of the glass, in the main NICU, where transition to home begins. I know that day is far in the future, and the future is very uncertain. But, today I held her against me, and she was warm and content and ... alive. And I believe that one day, I will hold her on the other side of the glass - minus the IVs, minus the ventilator, minus whatever machinery is assisting her today - and I will only be hours away from having my baby home with me, where she belongs. The NICU is an amazing place, staffed by angels on earth. And the isolette that does its best to mimic my womb is keeping my baby warm and oxygenated and safe. But there has never been a place I dread going to more, a place I fear more, a place that sends my heart racing with trepidation and panic, while yearning for stability to return to my life ... I want to never need that place again. But, Dear God, thank you for its existence.
Saturday, May 23, 2009
Two Weeks ...
Two weeks have passed since my life became "pre-Emma" and our new reality. Emma was still alive the following Saturday morning, and we decided to opt for a "safer" C-section delivery. Her viability would be determined by the neonatologist, who would assess her. I knew I could do nothing more than give her the chance at life. That is a very difficult position to be in as a parent - impotent, dependent upon others, praying desperately that this child would be strong enough to survive the terrible odds against her. The option of allowing my body to go into labor naturally, and delivering a baby that was sure to not survive the birth process was no longer a consideration for me. Perhaps if her heart had stopped beating during the night - but it had not. Instead, she was still with me, as if to say, "I can do this, Mom - just have faith."
Saturday, May 16, 2009
One Week Ago ...
FRIDAY, MAY 15, 2009:
One week ago, today, I went to get our usual Friday night pizza dinner.
One week ago, today, my water broke as I stood up to get out of the car.
One week ago, today, I drove myself to the ER, and told my Mom to take the pizza on home.
One week ago, today, I walked into the ER, barely able to get the words out to the receptionist, and heard her say, "Oh, no ..."
One week ago, today, I lay on a stretcher in the small town ER, ill-equipped to maintain the premature infant I might deliver at any time, awaiting transport to a bigger hospital 45 minutes away.
One week ago, today, I was told the Advanced Life Support ambulance was prepared to deliver the baby en-route.
One week ago, today, I was transported by ALS, in rush-hour traffic, at 70 miles per hour, riding on the rumble strips, in a desperate attempt to get me to the other hospital before the baby came.
One week ago, today, I was told an infection had invaded my uterus, all my amniotic fluid was gone, and there was no way to stave off my baby's premature birth.
One week ago, today, I lay flat on a stretcher, surrounded by a perinatologist, a neonatologist, an obstetrician/surgeon, a nurse practitioner who specializes in neonates, and various residents, all who viewed and reviewed my baby's ultrasound, of diminished quality due to the lack of amniotic fluid. At stake was her "viability", as her gestational age was questionable.
One week ago, today, the difference between 23 weeks and 24 weeks became of utmost importance - the difference between life and death.
One week ago, today, it was determined that my life was at risk if I continued to clot from the placenta that had failed, and was breaking off inside me. Unplugging all monitors and letting me rest, was determined the best course of action in light of the baby's "pre-viability".
One week ago, today, I was told we would listen for a heart beat in the morning, but it was most likely that my little girl would be gone, unable to sustain herself without the sustenance of placenta and fluid that had been her protection until 4 p.m. Friday, May 8, 2009.
One week ago, today, I went to get our usual Friday night pizza dinner.
One week ago, today, my water broke as I stood up to get out of the car.
One week ago, today, I drove myself to the ER, and told my Mom to take the pizza on home.
One week ago, today, I walked into the ER, barely able to get the words out to the receptionist, and heard her say, "Oh, no ..."
One week ago, today, I lay on a stretcher in the small town ER, ill-equipped to maintain the premature infant I might deliver at any time, awaiting transport to a bigger hospital 45 minutes away.
One week ago, today, I was told the Advanced Life Support ambulance was prepared to deliver the baby en-route.
One week ago, today, I was transported by ALS, in rush-hour traffic, at 70 miles per hour, riding on the rumble strips, in a desperate attempt to get me to the other hospital before the baby came.
One week ago, today, I was told an infection had invaded my uterus, all my amniotic fluid was gone, and there was no way to stave off my baby's premature birth.
One week ago, today, I lay flat on a stretcher, surrounded by a perinatologist, a neonatologist, an obstetrician/surgeon, a nurse practitioner who specializes in neonates, and various residents, all who viewed and reviewed my baby's ultrasound, of diminished quality due to the lack of amniotic fluid. At stake was her "viability", as her gestational age was questionable.
One week ago, today, the difference between 23 weeks and 24 weeks became of utmost importance - the difference between life and death.
One week ago, today, it was determined that my life was at risk if I continued to clot from the placenta that had failed, and was breaking off inside me. Unplugging all monitors and letting me rest, was determined the best course of action in light of the baby's "pre-viability".
One week ago, today, I was told we would listen for a heart beat in the morning, but it was most likely that my little girl would be gone, unable to sustain herself without the sustenance of placenta and fluid that had been her protection until 4 p.m. Friday, May 8, 2009.
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