.JPG)
It is taking me all of my strength right now to write this. Never in a million years did I ever think we were going to lose Jessica. It was Tuesday morning during rounds when everything came crashing down. Monday after meeting the new neonatologist we knew she was sicker then we thought...and unfortunately the U/S results we were waiting to hear about were not good news.
I arrived late to rounds, Keith was there, so I missed alot of the discussion, and even when I was there, I was sitting outside the circle and didn't hear very well. All I remember hearing is the beginning discussion of Jessica's cranial U/S and the Dr. asking Keith if he knew about it, and he didn't. He asked Keith where I was and Keith pointed to me behind him. The doctor immediately interrupted rounds to have a family meeting. Alot of our discussion is still a blur to us, so we were explained many times of her situation. Her abdomen U/S showed no air/gas which she should have had by this point after surgery (the air before was found outside her bowels which is why they had to do surgery). Her blood pressure dropped immediately after her last dose of hydrocortisone wore off, which not only could she not maintain her blood pressure but also a sign that her adrenal glands were not working as they should. Dr. G explained to us that she had a 95% chance of passing away even if he did all heroic measures and tests possible to keep her alive, within a week. I personally think she would have lasted longer, but I'm not the doctor. And if she did survive that week, she would get sicker and may be in pain. On top of this, her cranial U/S showed a grade 3 bleed, which is severe. This is on top of her PVL discussed in an earlier blog. We were told that even if she miraculously made it through everything...(her lung disease, PDA, NEC) she would have no quality of life. And if she could get through her NEC issues, (which most likely she wouldn't) in her bowels, she would most likely end up with something called short gut syndrome (or something like that) where she would never be able to leave the hospital because she would be fed through IV, and eventually this would damage her liver. Although she possibly could have lived like this for a couple of years, she would eventually pass because of her liver. So the decision that I feared from the first day knowing that I had TTTS, the decision that no parent should ever have to make, became reality, and Keith and I had to decide if we continue treatment or not.
Keith and I kept thinking of that 5% chance. And this is not even thinking of her quality of life, but 5% chance of even surviving, we wanted to believe she would miraculously beat all odds, so we requested to meet with Dr. J for a second opinion, who was Jessica's Dr. for the past 3 weeks. Unfortunately she was in Cape Breton on Tuesday, however we were able to talk to her on the phone. After discussion with Dr. G, she told us the same information, less technical and in a nicer way...and without telling us exactly what to do, she really did help make up our mind. She knew we would never want to have Jessica in any pain, or to pass away suddenly without a chance for us to say goodbye, or to prolong her life just for selfish reasons to have her with us longer...she knew us, and knew how much we loved her.
Our second family meeting, we really didn't have any decisions made. I asked the Dr. if he thought she would be fine one more night, because we needed more time. I dont' remember exactly what was said, but not what I was hoping for...he went on about all this medical stuff and bleeding out of here and there, and all the possibilities that could have happened, which made things so much worse then they really needed to be. I just needed someone to say..."Yes she'll be fine one more night." Thank God for our nurse Sharla. She was the exact person we needed that day, and I don't think we could have got through the day without her. She explained things to us so well. She even switched her shift for us so she could be with us the next day. Alyssa's nurse was also who we needed working those couple of days, Charlotte, who has really been there for us since the first week the girls were born.
Wednesday we had another family meeting...our brains kept telling us what the right decision was, but our hearts kept telling us something different. Dr. J came to see us as soon as she got back from Cape Breton, and only after talking with her, I felt we really only had one decision...and it was SO SO hard to make. We told the doctor that we would let Jessica go, it was so difficult to get the words out. So she was kept on her pain medication and the orders for DNR (do not rescusitate) were charted. Charlotte, one of primary nurses had said they could arrange to have both girls together if we liked, and of course we wanted this.
I really am trying to make this as short as possible, but I feel like I need to tell everyone exactly what happened, to hopefully allow myself to believe we really did make the right decision. Even after we made our decision, we still struggled. We were told that once Jessica was switched off the oscillator to the regular ventilator she would most likely not survive long. We were also told that once her tube was taken out, although most babies hearts are strong and continue to beat for a couple hours after words...that hers most likely would not because she was sick and her body was not showing any signs of healing on her own. The one thing that I found really helped me...was when Sharla told us that it is Jessica making the decision, with her body not healing. She was ready to get her wings, without making all of it lay on our hands. If she only had one problem, it would have been so different. But she had so many, she really had all the possible problems a premie could have.
Jessica gave us the day with her. That was her gift to us. We held her in our arms all Wednesday, and Alyssa also spent the afternoon in our arms with her. They held hands, they will always be twin sisters, and she will always be a big part of our lives. It was so hard to see all of her vital signs looking so good when she was on the regular ventilator. But we knew the inside of her wasn't doing well. That evening Jessica came into our parent room with us, and we cuddled with her for the last time on our bed, she was perfect. This was the first time I really looked so closely at her. She had all of her little parts perfectly shaped, her colour was so good, nice and pink, her body was swollen from being on the paralyser medication for so long, but she was finally moving for us as they stopped giving it to her when on the ventilator. Her little ears were not fully developed with cartilage so they were a little flat....her big toe on the right was perfect...no more bruising. Her skin was so soft, she had such dark eyebrows. She was, and always will be perfect in our hearts.
Thursday June 12, 2008 Jessica was one month old, and her tube was taken out shortly after midnight.
He was wrong...she did have a strong heart...and it continued to beat for 4 more hours. And then finally our little girl got her wings. After only a month she brought us more joy then you can imagine, she was a beautiful little girl, and I know she will be helping Alyssa through all of this. I don't think I can write anymore now. Please know that we love you all for your support and prayers during this really difficult time.
I arrived late to rounds, Keith was there, so I missed alot of the discussion, and even when I was there, I was sitting outside the circle and didn't hear very well. All I remember hearing is the beginning discussion of Jessica's cranial U/S and the Dr. asking Keith if he knew about it, and he didn't. He asked Keith where I was and Keith pointed to me behind him. The doctor immediately interrupted rounds to have a family meeting. Alot of our discussion is still a blur to us, so we were explained many times of her situation. Her abdomen U/S showed no air/gas which she should have had by this point after surgery (the air before was found outside her bowels which is why they had to do surgery). Her blood pressure dropped immediately after her last dose of hydrocortisone wore off, which not only could she not maintain her blood pressure but also a sign that her adrenal glands were not working as they should. Dr. G explained to us that she had a 95% chance of passing away even if he did all heroic measures and tests possible to keep her alive, within a week. I personally think she would have lasted longer, but I'm not the doctor. And if she did survive that week, she would get sicker and may be in pain. On top of this, her cranial U/S showed a grade 3 bleed, which is severe. This is on top of her PVL discussed in an earlier blog. We were told that even if she miraculously made it through everything...(her lung disease, PDA, NEC) she would have no quality of life. And if she could get through her NEC issues, (which most likely she wouldn't) in her bowels, she would most likely end up with something called short gut syndrome (or something like that) where she would never be able to leave the hospital because she would be fed through IV, and eventually this would damage her liver. Although she possibly could have lived like this for a couple of years, she would eventually pass because of her liver. So the decision that I feared from the first day knowing that I had TTTS, the decision that no parent should ever have to make, became reality, and Keith and I had to decide if we continue treatment or not.
Keith and I kept thinking of that 5% chance. And this is not even thinking of her quality of life, but 5% chance of even surviving, we wanted to believe she would miraculously beat all odds, so we requested to meet with Dr. J for a second opinion, who was Jessica's Dr. for the past 3 weeks. Unfortunately she was in Cape Breton on Tuesday, however we were able to talk to her on the phone. After discussion with Dr. G, she told us the same information, less technical and in a nicer way...and without telling us exactly what to do, she really did help make up our mind. She knew we would never want to have Jessica in any pain, or to pass away suddenly without a chance for us to say goodbye, or to prolong her life just for selfish reasons to have her with us longer...she knew us, and knew how much we loved her.
Our second family meeting, we really didn't have any decisions made. I asked the Dr. if he thought she would be fine one more night, because we needed more time. I dont' remember exactly what was said, but not what I was hoping for...he went on about all this medical stuff and bleeding out of here and there, and all the possibilities that could have happened, which made things so much worse then they really needed to be. I just needed someone to say..."Yes she'll be fine one more night." Thank God for our nurse Sharla. She was the exact person we needed that day, and I don't think we could have got through the day without her. She explained things to us so well. She even switched her shift for us so she could be with us the next day. Alyssa's nurse was also who we needed working those couple of days, Charlotte, who has really been there for us since the first week the girls were born.
Wednesday we had another family meeting...our brains kept telling us what the right decision was, but our hearts kept telling us something different. Dr. J came to see us as soon as she got back from Cape Breton, and only after talking with her, I felt we really only had one decision...and it was SO SO hard to make. We told the doctor that we would let Jessica go, it was so difficult to get the words out. So she was kept on her pain medication and the orders for DNR (do not rescusitate) were charted. Charlotte, one of primary nurses had said they could arrange to have both girls together if we liked, and of course we wanted this.
I really am trying to make this as short as possible, but I feel like I need to tell everyone exactly what happened, to hopefully allow myself to believe we really did make the right decision. Even after we made our decision, we still struggled. We were told that once Jessica was switched off the oscillator to the regular ventilator she would most likely not survive long. We were also told that once her tube was taken out, although most babies hearts are strong and continue to beat for a couple hours after words...that hers most likely would not because she was sick and her body was not showing any signs of healing on her own. The one thing that I found really helped me...was when Sharla told us that it is Jessica making the decision, with her body not healing. She was ready to get her wings, without making all of it lay on our hands. If she only had one problem, it would have been so different. But she had so many, she really had all the possible problems a premie could have.
Jessica gave us the day with her. That was her gift to us. We held her in our arms all Wednesday, and Alyssa also spent the afternoon in our arms with her. They held hands, they will always be twin sisters, and she will always be a big part of our lives. It was so hard to see all of her vital signs looking so good when she was on the regular ventilator. But we knew the inside of her wasn't doing well. That evening Jessica came into our parent room with us, and we cuddled with her for the last time on our bed, she was perfect. This was the first time I really looked so closely at her. She had all of her little parts perfectly shaped, her colour was so good, nice and pink, her body was swollen from being on the paralyser medication for so long, but she was finally moving for us as they stopped giving it to her when on the ventilator. Her little ears were not fully developed with cartilage so they were a little flat....her big toe on the right was perfect...no more bruising. Her skin was so soft, she had such dark eyebrows. She was, and always will be perfect in our hearts.
Thursday June 12, 2008 Jessica was one month old, and her tube was taken out shortly after midnight.
He was wrong...she did have a strong heart...and it continued to beat for 4 more hours. And then finally our little girl got her wings. After only a month she brought us more joy then you can imagine, she was a beautiful little girl, and I know she will be helping Alyssa through all of this. I don't think I can write anymore now. Please know that we love you all for your support and prayers during this really difficult time.
3 comments:
Jennifer and Keith: Congratulations for this wonderful educational blog. I hope IWK has it on file so some couple who face the same situation will be able to go right away to your blog and learn from the start the ups and downs they will face during the pegnancy and after birth. As I said tonight at church in Lincoln, Jessica may have lived for only a month but her story will live on because of your desire to maintain this blog. Stay strong and pray to God's newest angel to be at your side this week and all the days to come. You are all in all prayers!
Jenn & Keith: When my little Andrew died I received this from a Mom who had also lost a little one. It touched my heart and I carried it in my wallet for so many years so I thought I'd share it with you:
For All Parents
I'll lend you for a little time, a child of mine, she said.
For you to love while she lives, and mourn when she is dead
It may be six or seven years, or 22 or three,
But will you, till I call her back, take care of her for me?
She'll bring her charms to gladden you, and shall her stay be brief
You'll have her lovely memories as solace for your grief.
I cannot promise she will stay, since all from earth return,
But there are lessons taught down there I want this child to learn.
I've looked the wide world over in my search for teachers true
And from the throngs that crowd life's lanes, I have selected you.
Now will you give her all your love, nor think the labour vain,
Nor hate me when I come to call, to take her home again?
I fancied that I heard them say, Dear Lord, Thy will be done.
For all the joy thy child shall bring, the risk of grief we'll run.
We'll shelter her with tenderness, we'll love her while we may;
And for the happiness we've known, will ever grateful stay.
But shall the angels call for her much sooner than we planned,
We'll brave the bitter grief that comes, and try to understand.
Our prayers and thoughts are with you and all of your family on this day. Take Care, Sheri, Troy and Ryan Beers
Post a Comment