How It All Changes In A Moment
On the 24th of October, 2006, at 2:05 pm my baby girl was born.
My water had broken 4 weeks early. After 8 hours of water trickling most of the evening, I went to Labor & Delivery at 2 am with my 3 other children in tow when the flood gates opened. I was induced as there were no contractions and she wasn't even in the birth canal. The labor was pretty quick, and delivery was one simple push and no tearing. My mom was with me through it all. I had tried to send my mother home with the kids, and I told her it would be no big deal as I had already done it three other times. How thankful I was that she didn't listen to me.
The doctor annouced that it was a girl (which I already knew) and that she had a "small cleft lip" (that was a surprise). As the doctor finished up on me, my baby girl was evaluated and given a score of 9/9. She weighed 5 pounds 13 ounces. The nurse seemed to want to send her off to the nursery as her temperature wasn't right, but NICU kept saying there was no reason.
It broke my heart when I finally saw and held my baby girl. A "small cleft lip" didn't explain what I saw. She looked so different. Everyone in the Delivery Room - told me how it could all be fixed and what wonders could be done today in medicine. I was asked if I had an ultrasound and knew about the cleft lip(this is the first time I would hear that question, a question asked over and over in the coming week). I had had 2 ultrasounds, neither of them picked up anything abnormal. I knew that a cleft lip would not be the end of world for her and me. It broke my heart because I know how cruel society can be, and I didn't want her to experience any of that. They asked me for a name, and I told them I didn't know yet.
The Lactation Specialist came in, but my baby girl had no interest in nursing - all she wanted to do was be held and sleep. So Mom and I took turns holding her. Mom said she looked at like a Woodlen Elf. The Lactation Specialist stated that my baby girl had a cleft lip and palette. More bad news, but nothing we couldn't handle.
The NICU finally came to take her away and evaluate her. And that was when my life went from normal (with some doctor's appointments for cosmetic surgery).....to a life of uncertain and unknown future.
It was after she left, I believe, that it hit me, my baby never cried. My other three children cried when they came out from the safety of me into the cold world - but my baby girl didn't. She just whimpered a little.
The head doctor of the NICU came into my recovery to speak with me. God, I don't know how much more I can handle today, please don't place more on my shoulders. The doctor explained that my baby girl's head size and other facial features are concerning them, and an ultrasound of her brain has shown that she has "Agenesis of the Corpus Callosum" and "Absence of the Septum Pellucidum". Which explained to me, meant she was missing the top covering of her brain that goes over the two hemispheres and another "piece" of brain deeper down that is sorta bean shaped. The ultrasound showed this, but nothing could be confirmed until an MRI is done in a few days. The MRI would also show any frontal lobe brain damage. Everything else seemed OK with her. Again I was asked if I had had an ultrasound and did I know before the birth.
I came home from the hospital on the 26th of October. That was the day she was named. With some discussion with my husband, she was given the name Trinity Angel Rose........I needed the perfect name for her.
So Trnity stayed in the NICU under an oxygen tent - which means I couldn't hold her. She spent 7 days in the NICU at my local hospital, PRMC - with minor problems - She had a nasal tube put in to feed her. I noticed one day during that week that her breathing seemed very labored. An x-ray showed that she had a hole in her right lung and had air trapped in the chest cavity - so they drained the air with a needle and later decided to insert a chest tube. The next day the tube was removed and she seemed to improving every day. Every time a new nurse came on to care for Trinity, the first question they asked me was "Did you have an ultrasound? Did you know?"
On Monday the 30th of October, I called into find out when the MRI would be preformed that day - it was then the doctor informed me that they were going to transfer her to John Hopkins in Baltimore. Trinity's sodium levels were rising (when did her sodium levels come in to play?) and he felt the reading of the MRI would be read better at Hopkins. So now my baby girl was being moved before she was a week old to a hospital 3 hours away.
John Hopkins is one of the best hospitals, and I knew she would receive the best care there. But a feeling of horror was coming over me. Trinity did have major problems, and no one was really saying what they were. I don't know if they knew what was going on with her or not, but no one seemed to really want to get down to specifics with me about Trinity. When I got off the phone with the doctor, I rushed to take a shower to get to the hospital to see and hold her again before she left.
My water had broken 4 weeks early. After 8 hours of water trickling most of the evening, I went to Labor & Delivery at 2 am with my 3 other children in tow when the flood gates opened. I was induced as there were no contractions and she wasn't even in the birth canal. The labor was pretty quick, and delivery was one simple push and no tearing. My mom was with me through it all. I had tried to send my mother home with the kids, and I told her it would be no big deal as I had already done it three other times. How thankful I was that she didn't listen to me.
The doctor annouced that it was a girl (which I already knew) and that she had a "small cleft lip" (that was a surprise). As the doctor finished up on me, my baby girl was evaluated and given a score of 9/9. She weighed 5 pounds 13 ounces. The nurse seemed to want to send her off to the nursery as her temperature wasn't right, but NICU kept saying there was no reason.
It broke my heart when I finally saw and held my baby girl. A "small cleft lip" didn't explain what I saw. She looked so different. Everyone in the Delivery Room - told me how it could all be fixed and what wonders could be done today in medicine. I was asked if I had an ultrasound and knew about the cleft lip(this is the first time I would hear that question, a question asked over and over in the coming week). I had had 2 ultrasounds, neither of them picked up anything abnormal. I knew that a cleft lip would not be the end of world for her and me. It broke my heart because I know how cruel society can be, and I didn't want her to experience any of that. They asked me for a name, and I told them I didn't know yet.
The Lactation Specialist came in, but my baby girl had no interest in nursing - all she wanted to do was be held and sleep. So Mom and I took turns holding her. Mom said she looked at like a Woodlen Elf. The Lactation Specialist stated that my baby girl had a cleft lip and palette. More bad news, but nothing we couldn't handle.
The NICU finally came to take her away and evaluate her. And that was when my life went from normal (with some doctor's appointments for cosmetic surgery).....to a life of uncertain and unknown future.
It was after she left, I believe, that it hit me, my baby never cried. My other three children cried when they came out from the safety of me into the cold world - but my baby girl didn't. She just whimpered a little.
The head doctor of the NICU came into my recovery to speak with me. God, I don't know how much more I can handle today, please don't place more on my shoulders. The doctor explained that my baby girl's head size and other facial features are concerning them, and an ultrasound of her brain has shown that she has "Agenesis of the Corpus Callosum" and "Absence of the Septum Pellucidum". Which explained to me, meant she was missing the top covering of her brain that goes over the two hemispheres and another "piece" of brain deeper down that is sorta bean shaped. The ultrasound showed this, but nothing could be confirmed until an MRI is done in a few days. The MRI would also show any frontal lobe brain damage. Everything else seemed OK with her. Again I was asked if I had had an ultrasound and did I know before the birth.
I came home from the hospital on the 26th of October. That was the day she was named. With some discussion with my husband, she was given the name Trinity Angel Rose........I needed the perfect name for her.
So Trnity stayed in the NICU under an oxygen tent - which means I couldn't hold her. She spent 7 days in the NICU at my local hospital, PRMC - with minor problems - She had a nasal tube put in to feed her. I noticed one day during that week that her breathing seemed very labored. An x-ray showed that she had a hole in her right lung and had air trapped in the chest cavity - so they drained the air with a needle and later decided to insert a chest tube. The next day the tube was removed and she seemed to improving every day. Every time a new nurse came on to care for Trinity, the first question they asked me was "Did you have an ultrasound? Did you know?"
On Monday the 30th of October, I called into find out when the MRI would be preformed that day - it was then the doctor informed me that they were going to transfer her to John Hopkins in Baltimore. Trinity's sodium levels were rising (when did her sodium levels come in to play?) and he felt the reading of the MRI would be read better at Hopkins. So now my baby girl was being moved before she was a week old to a hospital 3 hours away.
John Hopkins is one of the best hospitals, and I knew she would receive the best care there. But a feeling of horror was coming over me. Trinity did have major problems, and no one was really saying what they were. I don't know if they knew what was going on with her or not, but no one seemed to really want to get down to specifics with me about Trinity. When I got off the phone with the doctor, I rushed to take a shower to get to the hospital to see and hold her again before she left.
posted by Trinity Angel Rose @ 11/09/2006 10:44:00 AM
1 Comments:
At 8:41 PM,
Rhubarb said…
I just came across your blog and was brought to tears for the anguish and uncertainty you must be feeling. May God make this journey easy for you and bless and protect your beautiful daughter. You will be in my prayers...
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