phoenixflysagain
05-23-2008, 10:16 PM
No, it was not my son who I recently felt the loss of. It was the daughter, the very first child in fact, of a wonderful couple who have helped me deal with all of the accumulating problems with my own son due to the fact that both of our children suffered from the same illnesses associated with prematurity.
This gave me a special bond with this woman and her husband. Having the same struggles, though with different children I knew how she felt and the feeling was reciprocated through her understanding of the stresses I've felt day to day with my own newborn.
She arrived here just a few months after I did, her daughter was born at 26 weeks, however, weighing in less than my son who was born at 23. Her daughter was 1lb. 3oz. whereas my son was 1lb.5 oz. Both of our children had extreme hypertension brought on by Bronchial Pulmonary Dysplasia. Neither of our children could go lower on their settings than a very high 5 litres of highflow before 'crashing' and ending up back on SiPap or even worse intubated. My son (being older) was moved to the PICU from the NICU about a month ago and her daughter was the next 'oldest' baby in the NICU. Scheduled for the move to the PICU soon thereafter.
Our struggles mirrored one another as we continued to visit our children and honored a mutual respect, even a kinship with one another as we both fought through our problems and talked to one another about 'the next step'.
That next step being a Trachiostomy. Within one week of each other our children had the operation that for them was supposed to ease the breathing and help with the scar tissue in the lungs. Thereby easing the hypertension. It succeded for my child who has made vast improvements by leaps and bounds. Her own child was doing beautifully with it too. We were both learning the ins and outs of trach care and reassuring each other that we could do it and be able to take our children home *finally* after many many months in the hospital after they where deemed 'stable'.
Sadly, the day that they moved her daughter over to the PICU She suffered a near-fatal heart attack. The doctors and nurses do not even know what caused it. She just seemed to 'crash'. From that moment on, I sat with her and tried to comfort her the best I could. Telling her that there is always hope, you just have to keep believing in your descisions and in your child. More importaintly in yourself. She made it this far already, there had to be options they could look into... That poor little angel was in an induced coma for 72 hours, the ventilator breathing for her and her small little body nearly motionless as her mother and father sat by her side that whole time. I checked in on her as often as I could, asking if there had been any improvement or if they had discovered anything new or if they could even do anything, I also tried the best I could to comfort her as she had me time and time again. The answer was sadly always the same. There was no change, there wasn't anything they could do. After that short period of time, I ran into her in the hall of the hospital and asked her again if there was anything the doctors where doing. She had said that if they got her stabilized enough they where going to transfer her to a better hospital in NYC so that she could possibly get better. They finally took her off the drug that was inducing the coma and started her on the 'last resort'. A drug that they had to ship here from NYC hoping that that would improve her condition so the transfer could happen.
The following day she was surrounded by her family and I didn't want to impose or intrude. I just left her a note fearing the worst with my number on it and saying if she ever needed to have someone listen, to just call. Feeling as if my heart was breaking because after all we had struggled through, her baby was passing away. It was almost as if I was losing my niece. Even though we are of no blood relation to one another.
Hopefully, sometime in the future she will call. I would like to speak to her even though I'm not sure if she wants to talk to me. But, I know deep down that her daughter is in heaven.
She was so very, very special
And was so from the start
You held her in your arms
But mainly in your heart
And like a single drop of rain
That on still waters fall,
Her life did ripples make
And touched the lives of all.
She's gone to play with angels
In heaven up above
So keep your special memories
And treasure. them with love
Although your darling daughter
Was with you just a while
She'll live on in your heart
With a sweet remembered smile
-Author Unknown
Godspeed Sadie Grace.
This gave me a special bond with this woman and her husband. Having the same struggles, though with different children I knew how she felt and the feeling was reciprocated through her understanding of the stresses I've felt day to day with my own newborn.
She arrived here just a few months after I did, her daughter was born at 26 weeks, however, weighing in less than my son who was born at 23. Her daughter was 1lb. 3oz. whereas my son was 1lb.5 oz. Both of our children had extreme hypertension brought on by Bronchial Pulmonary Dysplasia. Neither of our children could go lower on their settings than a very high 5 litres of highflow before 'crashing' and ending up back on SiPap or even worse intubated. My son (being older) was moved to the PICU from the NICU about a month ago and her daughter was the next 'oldest' baby in the NICU. Scheduled for the move to the PICU soon thereafter.
Our struggles mirrored one another as we continued to visit our children and honored a mutual respect, even a kinship with one another as we both fought through our problems and talked to one another about 'the next step'.
That next step being a Trachiostomy. Within one week of each other our children had the operation that for them was supposed to ease the breathing and help with the scar tissue in the lungs. Thereby easing the hypertension. It succeded for my child who has made vast improvements by leaps and bounds. Her own child was doing beautifully with it too. We were both learning the ins and outs of trach care and reassuring each other that we could do it and be able to take our children home *finally* after many many months in the hospital after they where deemed 'stable'.
Sadly, the day that they moved her daughter over to the PICU She suffered a near-fatal heart attack. The doctors and nurses do not even know what caused it. She just seemed to 'crash'. From that moment on, I sat with her and tried to comfort her the best I could. Telling her that there is always hope, you just have to keep believing in your descisions and in your child. More importaintly in yourself. She made it this far already, there had to be options they could look into... That poor little angel was in an induced coma for 72 hours, the ventilator breathing for her and her small little body nearly motionless as her mother and father sat by her side that whole time. I checked in on her as often as I could, asking if there had been any improvement or if they had discovered anything new or if they could even do anything, I also tried the best I could to comfort her as she had me time and time again. The answer was sadly always the same. There was no change, there wasn't anything they could do. After that short period of time, I ran into her in the hall of the hospital and asked her again if there was anything the doctors where doing. She had said that if they got her stabilized enough they where going to transfer her to a better hospital in NYC so that she could possibly get better. They finally took her off the drug that was inducing the coma and started her on the 'last resort'. A drug that they had to ship here from NYC hoping that that would improve her condition so the transfer could happen.
The following day she was surrounded by her family and I didn't want to impose or intrude. I just left her a note fearing the worst with my number on it and saying if she ever needed to have someone listen, to just call. Feeling as if my heart was breaking because after all we had struggled through, her baby was passing away. It was almost as if I was losing my niece. Even though we are of no blood relation to one another.
Hopefully, sometime in the future she will call. I would like to speak to her even though I'm not sure if she wants to talk to me. But, I know deep down that her daughter is in heaven.
She was so very, very special
And was so from the start
You held her in your arms
But mainly in your heart
And like a single drop of rain
That on still waters fall,
Her life did ripples make
And touched the lives of all.
She's gone to play with angels
In heaven up above
So keep your special memories
And treasure. them with love
Although your darling daughter
Was with you just a while
She'll live on in your heart
With a sweet remembered smile
-Author Unknown
Godspeed Sadie Grace.