Today I am writing the first post in 5 months since Bella passed...not because I haven't wanted to but because I just couldn't
Today I admit that I haven't been able to process the emotions of it all...if you have talked to me in the past 5 months I have probably told you other wise
Today I admit that I have ran...ran from the sadness ,ran from the memories, ran from the pity, ran from the little and big ways it has changed our life forever. Today I must start to learn how to deal with these things
Today I just miss her...Today is Sunday and Sundays were always our day. It was the day that I could go to the hospital and be with her without the demands of the outside world
Today I question what we are really doing with our life that is truly a testament to her life and all that she has taught us...
Today I think back to around this time last year when she was starting to come off of the ventilator, I think of those moments when she breathed on her own and how precious each breath was
Today I acknowledge that somewhere there is someone who suffers more than I and that my situation could always be worse..I know that if I could start to help others, it would in turn help me
Today I crave the touch of her skin, to cradle her in my arms and to have her little fingers clasped around mine. I want to share a song, a book and some sunshine with her today
Today I wish that others that I love could see the hands of God working in their own life and many of their own miracles unfolding before them. I wish that I could help them see how precious each minute of each day is
Today I just wish that I could slow the world down a little...I struggle to keep up these days because I just don't see the need to speed ahead
Today I am so incredibly thankful for the grace of God and knowing that He feels my pain right now
Today I need to feel, I need to talk, I need to process... I know that if I don't do these things they creep into my subconscious with flashbacks and nightmares
Today I will allow myself to grieve...today I will force others to allow me to grieve
Today I know will not be the same as tomorrow or yesterday...new emotions and scenarios surface every day that I find myself trying to adjust to
Today is that day that every thing can change...thru prayer and God's guidance I can take all of this and use it for the better, I can start today
Sunday, September 11, 2011
Monday, April 25, 2011
The Ocean of Grief
As I spend some time reflecting today on our first holiday without the physical presence of Bella I wanted to share with you some of my thoughts.
Over the past few months I have found that there is nothing consistent about grief. It is ever changing and ever present from moment to moment and day to day. Today I was thinking that grief is like the ocean. There are times when it seems so calm and inviting, to completely submerge yourself into it could bring rejuvenation and clarity. You allow yourself to grieve openly on those days, you allow yourself to remember, to talk and to long for because you know you are safe to do so. There are other times when it is stormy and choppy, the red flag waving and warning you that if you go there you risk being swallowed whole so you stand on the shore of safety and occasionally stick in your toe to test the waters.
Today was a day where I was unsure of what the ocean may bring but I dived in head first taking flowers to Bella's grave site, looking at photos and listening to songs that reminded me of her. I needed to submerge myself into it and hope for the best. I needed her. As I sat at her grave and thought of the Easter baskets that would go unfilled, the many beautiful Easter dresses that I longed to buy and the family gatherings that would go unattended by her I was washed away, going further and further into a sea of grief. The memories, the longing and the pain crashing into me and pulling me under. And just when I thought I might be swallowed whole He saved me again. Sending a raft of realization that all of the things that I want to give to her and do for her pale in comparison to the many gifts that she is now receiving in heaven and sometimes shares with me on Earth. Realizations that the overwhelming beauty of the Easter service that filled my heart and gave me an understanding of the true meaning like never before, the tears of happiness that I wept because of this new understanding, the amazing view that I beheld later that day while lying on a rock by a waterfall with my husband as the sun peaked thru the trees and the beautiful Easter lillies that decorated the church given by our friends in her memory and now will continue to grow in our yard....these are the gifts that take the place of the Easter traditions that I long to share. These gifts are enough for today and are a testament that God's grace is sufficient.
So back on the shore of safety I am a little worn, a little beaten but now that I have faced the storms and submerged myself into the ocean of grief I can fully enjoy the view, the calmness of the waters again and the peace of the sunset.
Hoping that all of your Easter celebrations were peace filled and the beauty of the true meaning touched your hearts like never before.
Much love to you all
Telisha
Over the past few months I have found that there is nothing consistent about grief. It is ever changing and ever present from moment to moment and day to day. Today I was thinking that grief is like the ocean. There are times when it seems so calm and inviting, to completely submerge yourself into it could bring rejuvenation and clarity. You allow yourself to grieve openly on those days, you allow yourself to remember, to talk and to long for because you know you are safe to do so. There are other times when it is stormy and choppy, the red flag waving and warning you that if you go there you risk being swallowed whole so you stand on the shore of safety and occasionally stick in your toe to test the waters.
Today was a day where I was unsure of what the ocean may bring but I dived in head first taking flowers to Bella's grave site, looking at photos and listening to songs that reminded me of her. I needed to submerge myself into it and hope for the best. I needed her. As I sat at her grave and thought of the Easter baskets that would go unfilled, the many beautiful Easter dresses that I longed to buy and the family gatherings that would go unattended by her I was washed away, going further and further into a sea of grief. The memories, the longing and the pain crashing into me and pulling me under. And just when I thought I might be swallowed whole He saved me again. Sending a raft of realization that all of the things that I want to give to her and do for her pale in comparison to the many gifts that she is now receiving in heaven and sometimes shares with me on Earth. Realizations that the overwhelming beauty of the Easter service that filled my heart and gave me an understanding of the true meaning like never before, the tears of happiness that I wept because of this new understanding, the amazing view that I beheld later that day while lying on a rock by a waterfall with my husband as the sun peaked thru the trees and the beautiful Easter lillies that decorated the church given by our friends in her memory and now will continue to grow in our yard....these are the gifts that take the place of the Easter traditions that I long to share. These gifts are enough for today and are a testament that God's grace is sufficient.
So back on the shore of safety I am a little worn, a little beaten but now that I have faced the storms and submerged myself into the ocean of grief I can fully enjoy the view, the calmness of the waters again and the peace of the sunset.
Hoping that all of your Easter celebrations were peace filled and the beauty of the true meaning touched your hearts like never before.
Much love to you all
Telisha
Wednesday, April 6, 2011
Our life today...
I have sat down to write many times over the past few weeks and the words just haven't come. I have wanted to fill everyone in on how we are and talk about the process a bit. But nothing came. It was just a few days ago that Chris and I sat down with our pastor (thanks Ken!) and were able to communicate how we are doing today and what this all means to us at this time. It was after that hour of just hearing us say these things out loud and meaning them that I realized we are doing well. So I just wanted to take the time today to share with all of you some of the things we have come to realize and the many ways the Lord continues to bless us.
There were several weeks following our return from the beach that I remained lost. I just went thru the motions with no real enthusiasm and very little motivation. I remember worrying that maybe this is how life would be from here on. Nothing with the exception of Dylan was as fulfilling as my days spent with Bella and watching her progress and grow. Nothing still is but I am learning to live with that void. I literally prayed my way out of bed in the mornings and completely relied on the Lord to carry me thru my days. Those were some long days. The early stages of grief is the hardest work you will ever do. It is exhausting and excruciating. It is lonely, hollow and empty.
I feel very blessed that we were able to move thru those early stages of grief rather quickly and have come to find peace & joy again in our life. Chris and I have discussed this and we agree that our sense of loss is different than most that grieve. Our gratitude and realization of just how blessed we were to have those 9 months overcomes any sense of loss. There is no bitterness, little regrets and peace has overcome all understanding of how and why. And more recently in the past few days or past week I have found that she is still always with me. I carry her throughout my days and her memories and presence bring me joy many, many times a day. I feel her always near and I never thought I would get to that point because I missed her physical being so much.
It has been interesting to watch how each of us have changed from this, just instantly we are different people than we were before. I like to think that we are significantly better and look forward to seeing how the Lord continues to change us for His needs. I see how both Chris and I are able to prioritize life and what really matters. All of the little stressers and silly worries are minimal these days. In myself I see that I do things because I really, really want to do them, not because I feel like I should or feel like I have to. That alone has made life more fulfilling and in many ways calmer. In Chris I see how he is willing to drop work in a drop of a hat to be there for me or Dylan. I have found that the moments we spend as a family, no matter what we are doing, are just richer. We prioritize time with friends and family like we never did before. We are blessed with so many that this is still a work in progress but we see the importance of doing it today like we never did before. I have realized that Dylan will never have the "only child" qualities because he will always have to share the love of his parents with his sister. He talks openly about Bella and how he misses her and I have come to realize that even at his young age he will carry her with him forever. I have found myself able to play and let go of responsibilities much easier just to be with him, completely and totally focused on him. Bella has made me think more about being welcomed into heaven than being remembered here on Earth. She has made me really think about the beauty of eternal life and cherish that one day I will be with her again forever.
There are some things that we are going to have to work on over time. There is a hard reality that sets in that life is not permanent and there truly are no guarantees for anyone. In many ways this realization will be the biggest influence on our life here forward. In some ways now it can be debilitating. I have to learn to trust again and live with the fact that my husband or my other child could be taken at any time. Right now the thought of this is crippling and I start to panic if I am away from either of them for a prolonged period of time or if Chris doesn't answer his phone when I call. I think this will calm with time and I am still learning to turn these emotions over to the Lord in prayer and meditation. We have more tendencies now to be over protective of Dylan than we ever did before. We are going to work on these so he doesn't live his life in fear and neither do we. I have come to realize that the Lord does allow you to choose: to choose to live in fear or trust, in sorrow or joy, for tomorrow or for today. The choice is ultimately ours but the blessings from the right choices are plentiful from Him.
There are other questions that have surfaced from her loss like do we intend to have more children? This is something we are not permanently set on today. But at this time we feel like we wanted 2 children, there was never any consideration of 3. We have 2 children. We have a daughter and son when both were never a guarantee with all of my female issues and medical history. I personally think to ask for anything more would be pushing it and far too risky. I would love for us to consider over the next year the thought of fostering or adopting. There are so many children that could bless our lives and benefit from the love we have to give. For now though we are going to learn to live with our circumstances of one child in heaven and one child here on Earth. We have faith that our year in Florida will lead us to the right answers for all of these questions. Where to go, what to do and so on...
We thank you again for lifting us in prayer, for all of the cards, messages, gifts and acts of kindness that you all have shown us. We are blessed to have all of you to share this life with and pray that we will see each of you in the next.
Much love to all
Telisha
There were several weeks following our return from the beach that I remained lost. I just went thru the motions with no real enthusiasm and very little motivation. I remember worrying that maybe this is how life would be from here on. Nothing with the exception of Dylan was as fulfilling as my days spent with Bella and watching her progress and grow. Nothing still is but I am learning to live with that void. I literally prayed my way out of bed in the mornings and completely relied on the Lord to carry me thru my days. Those were some long days. The early stages of grief is the hardest work you will ever do. It is exhausting and excruciating. It is lonely, hollow and empty.
I feel very blessed that we were able to move thru those early stages of grief rather quickly and have come to find peace & joy again in our life. Chris and I have discussed this and we agree that our sense of loss is different than most that grieve. Our gratitude and realization of just how blessed we were to have those 9 months overcomes any sense of loss. There is no bitterness, little regrets and peace has overcome all understanding of how and why. And more recently in the past few days or past week I have found that she is still always with me. I carry her throughout my days and her memories and presence bring me joy many, many times a day. I feel her always near and I never thought I would get to that point because I missed her physical being so much.
It has been interesting to watch how each of us have changed from this, just instantly we are different people than we were before. I like to think that we are significantly better and look forward to seeing how the Lord continues to change us for His needs. I see how both Chris and I are able to prioritize life and what really matters. All of the little stressers and silly worries are minimal these days. In myself I see that I do things because I really, really want to do them, not because I feel like I should or feel like I have to. That alone has made life more fulfilling and in many ways calmer. In Chris I see how he is willing to drop work in a drop of a hat to be there for me or Dylan. I have found that the moments we spend as a family, no matter what we are doing, are just richer. We prioritize time with friends and family like we never did before. We are blessed with so many that this is still a work in progress but we see the importance of doing it today like we never did before. I have realized that Dylan will never have the "only child" qualities because he will always have to share the love of his parents with his sister. He talks openly about Bella and how he misses her and I have come to realize that even at his young age he will carry her with him forever. I have found myself able to play and let go of responsibilities much easier just to be with him, completely and totally focused on him. Bella has made me think more about being welcomed into heaven than being remembered here on Earth. She has made me really think about the beauty of eternal life and cherish that one day I will be with her again forever.
There are some things that we are going to have to work on over time. There is a hard reality that sets in that life is not permanent and there truly are no guarantees for anyone. In many ways this realization will be the biggest influence on our life here forward. In some ways now it can be debilitating. I have to learn to trust again and live with the fact that my husband or my other child could be taken at any time. Right now the thought of this is crippling and I start to panic if I am away from either of them for a prolonged period of time or if Chris doesn't answer his phone when I call. I think this will calm with time and I am still learning to turn these emotions over to the Lord in prayer and meditation. We have more tendencies now to be over protective of Dylan than we ever did before. We are going to work on these so he doesn't live his life in fear and neither do we. I have come to realize that the Lord does allow you to choose: to choose to live in fear or trust, in sorrow or joy, for tomorrow or for today. The choice is ultimately ours but the blessings from the right choices are plentiful from Him.
There are other questions that have surfaced from her loss like do we intend to have more children? This is something we are not permanently set on today. But at this time we feel like we wanted 2 children, there was never any consideration of 3. We have 2 children. We have a daughter and son when both were never a guarantee with all of my female issues and medical history. I personally think to ask for anything more would be pushing it and far too risky. I would love for us to consider over the next year the thought of fostering or adopting. There are so many children that could bless our lives and benefit from the love we have to give. For now though we are going to learn to live with our circumstances of one child in heaven and one child here on Earth. We have faith that our year in Florida will lead us to the right answers for all of these questions. Where to go, what to do and so on...
We thank you again for lifting us in prayer, for all of the cards, messages, gifts and acts of kindness that you all have shown us. We are blessed to have all of you to share this life with and pray that we will see each of you in the next.
Much love to all
Telisha
Tuesday, March 15, 2011
And we depart.....
We have decided to call Laguna Beach, Florida our home for the next year. We will be leaving the first of May. We have been blessed with an ideal situation where we can rent the beach home that we have been so fortunate to vacation in over the years while my sister and brother in law rent our house here in Nashville. We made the decision while on vacation but have had to tie up some loose ends here before confirming. Amazingly everything has worked out so perfectly that we are left knowing this is definitely the right decision for us at this time.
While we were away Chris & I had much time to talk. We discovered that although we often expressed ourselves differently and handled our situation differently over the past 9 months, we both walked away with the exact same feelings about what Bella meant to us and what she means to our future. We know we are not the same people we were going into this. We have new goals for life, new dreams and new needs. We feel that instead of struggling to get on with our life as it was before, that we need to embrace all that we have learned and experienced. We need to take the time to find our new purpose in this life. We want to slow down and open up our hearts and minds to God's will for us and allow ourselves the time to heal. We want to invest in memories with Dylan and each other instead of college funds, savings accounts and a retirement plan. We have learned the hard way that memories are the only thing that truly matters in the end. They are the only real solid investment. We don't want that lesson to go to the way side by getting caught up in the hustle and bustle of the life we had before. We have a unique opportunity to go somewhere that will allow us to work towards becoming stronger physically, mentally and spiritually. And hopefully by taking care of ourselves during this time we can return and give ourselves completely to the many causes and needs we have come to know from Bella. We have so many ideas of how we can better ourselves and the world around us from our experience. We have talked of fostering medically fragile infants, adopting a special needs child, starting a non-profit to help those that follow in our footsteps or advocating for a chronic care facility here in Nashville. Whatever we decide we know that we want to do it prayerfully and with full conviction. We believe that as we heal, meditate and open up our lives more fully to the Lord that the answers will come.
Bella's life and death has given us a new set of eyes on the world around us and the life we lead. Hopefully in surrounding ourselves with the unfamiliar we can put this new perspective to the best use. The things that seemed to matter so much before seem of little importance to us now. We would like to think of this as a sabbatical of sorts but we don't have the luxury to stop working all together. We are just going to change our focus to work to live, instead of live to work. For Chris this means only keeping the clients on board that he can manage from afar and travel back to Nashville when needed. For myself, this means finding a job that allows me the time to indulge in the reasons we are moving in the first place while giving us the income needed to live a very minimal lifestyle. We don't need much at the beach and we look forward to challenging ourselves to cut out the unnecessary in the pursuit of happiness. We are moving forward with hope and trust that the Lord will open up the doors of opportunity to make this work.
Our hearts are heavy to leave those that have supported and surrounded us with love throughout this. However we are excited to offer everyone a place to visit and get away from the madness. We look forward to quality time over quantity with our family and friends. Our door is open always, the dinner table set, the waves crashing on the shore and Bella's beautiful smile can always be found in the sunset, so come on down....
I look forward to continuing the blog while away. I am in hopes that our experiences over the past 9 months can help at least one person. I am hoping to reflect and share insight with those that may follow in our footsteps. Mostly I pray that I can share with everyone the many ways that the Lord continues to bless us and guide us. And selfishly I hope to keep all of you near as we continue to heal and learn to live life without the physical presence of Bella. It does and will prove to be a challenge. I also truly hope that thru this blog you will share with us other prayer needs. We WANT to pray for others. We know the power of prayer, we know the comfort in having others pray for you and we need to grow as Christians. We need to be able to give back the most amazing gift we have ever received. Please comment with prayer requests or email them to me at telishacobb@gmail.com. These will not be shared with anyone but our family and the Lord unless you want to share with all of these amazing folks on here that have carried us in prayer.
Much love to you all
Telisha
While we were away Chris & I had much time to talk. We discovered that although we often expressed ourselves differently and handled our situation differently over the past 9 months, we both walked away with the exact same feelings about what Bella meant to us and what she means to our future. We know we are not the same people we were going into this. We have new goals for life, new dreams and new needs. We feel that instead of struggling to get on with our life as it was before, that we need to embrace all that we have learned and experienced. We need to take the time to find our new purpose in this life. We want to slow down and open up our hearts and minds to God's will for us and allow ourselves the time to heal. We want to invest in memories with Dylan and each other instead of college funds, savings accounts and a retirement plan. We have learned the hard way that memories are the only thing that truly matters in the end. They are the only real solid investment. We don't want that lesson to go to the way side by getting caught up in the hustle and bustle of the life we had before. We have a unique opportunity to go somewhere that will allow us to work towards becoming stronger physically, mentally and spiritually. And hopefully by taking care of ourselves during this time we can return and give ourselves completely to the many causes and needs we have come to know from Bella. We have so many ideas of how we can better ourselves and the world around us from our experience. We have talked of fostering medically fragile infants, adopting a special needs child, starting a non-profit to help those that follow in our footsteps or advocating for a chronic care facility here in Nashville. Whatever we decide we know that we want to do it prayerfully and with full conviction. We believe that as we heal, meditate and open up our lives more fully to the Lord that the answers will come.
Bella's life and death has given us a new set of eyes on the world around us and the life we lead. Hopefully in surrounding ourselves with the unfamiliar we can put this new perspective to the best use. The things that seemed to matter so much before seem of little importance to us now. We would like to think of this as a sabbatical of sorts but we don't have the luxury to stop working all together. We are just going to change our focus to work to live, instead of live to work. For Chris this means only keeping the clients on board that he can manage from afar and travel back to Nashville when needed. For myself, this means finding a job that allows me the time to indulge in the reasons we are moving in the first place while giving us the income needed to live a very minimal lifestyle. We don't need much at the beach and we look forward to challenging ourselves to cut out the unnecessary in the pursuit of happiness. We are moving forward with hope and trust that the Lord will open up the doors of opportunity to make this work.
Our hearts are heavy to leave those that have supported and surrounded us with love throughout this. However we are excited to offer everyone a place to visit and get away from the madness. We look forward to quality time over quantity with our family and friends. Our door is open always, the dinner table set, the waves crashing on the shore and Bella's beautiful smile can always be found in the sunset, so come on down....
I look forward to continuing the blog while away. I am in hopes that our experiences over the past 9 months can help at least one person. I am hoping to reflect and share insight with those that may follow in our footsteps. Mostly I pray that I can share with everyone the many ways that the Lord continues to bless us and guide us. And selfishly I hope to keep all of you near as we continue to heal and learn to live life without the physical presence of Bella. It does and will prove to be a challenge. I also truly hope that thru this blog you will share with us other prayer needs. We WANT to pray for others. We know the power of prayer, we know the comfort in having others pray for you and we need to grow as Christians. We need to be able to give back the most amazing gift we have ever received. Please comment with prayer requests or email them to me at telishacobb@gmail.com. These will not be shared with anyone but our family and the Lord unless you want to share with all of these amazing folks on here that have carried us in prayer.
Much love to you all
Telisha
Friday, March 11, 2011
Welcome to Holland
This article was sent to me a while ago from a dear friend that always seems to know what I need when I need it. Today I share it with you and dedicate it to my friend, Mollie Shepperd, the most amazing ambassador and tour guide of Holland that I am blessed to know...
Welcome to Holland by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel: It’s like this…..
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You learn some handy phrases in Italian. It’s all very interesting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?” you say. “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy different guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you have been there for a while and catch your breath, you look around…….and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy……and they’re all bragging about the wonderful time they had there. And for the rest of your life, you will say ….
“Yes, that is where I was supposed to go. That is what I had planned.”
And the pain of that will never, ever, ever go away……because the loss of that dream is a very significant loss.
But…….if you spend your life mourning that fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…..about Holland.
Welcome to Holland by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel: It’s like this…..
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You learn some handy phrases in Italian. It’s all very interesting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?” you say. “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy different guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you have been there for a while and catch your breath, you look around…….and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy……and they’re all bragging about the wonderful time they had there. And for the rest of your life, you will say ….
“Yes, that is where I was supposed to go. That is what I had planned.”
And the pain of that will never, ever, ever go away……because the loss of that dream is a very significant loss.
But…….if you spend your life mourning that fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…..about Holland.
Wednesday, March 9, 2011
And we return....
We returned to Nashville on Sunday evening after spending a full week at a beach house in Laguna Beach, Florida. We are blessed to say that we found some peace in removing ourselves from life as we knew it but even more blessed to report that we also found great clarity to life in general. We had sunshine filled days of doing nothing but playing and just being together. We learned to just be. And with all of the great beauty that we witnessed we also learned that nothing is or was as beautiful as Bella's smiles or her physical presence on this Earth. With that we are left with the question, not why did God take her from us BUT why did He bless us with her for those 9 amazing months? And what can we do with our life from here forward to be witnesses for the many miracles we were blessed with during that time? What can we do that will ever be as rewarding or fulfilling as she was to us? How do we move forward exercising the many, many lessons we learned from her life and her death? We have a few ideas, some definite goals but mostly we know that we just have to turn our life over to the Lord. Fully and completely, trusting that He will lead us each and every day. We also know that these answers are not going to come over night. They are not going to come from a trip to the beach. They are not going to come in returning to life as we knew it. They will come as the healing continues, as we devote time to prayer and meditation and as we learn to trust completely. The answers will come when we have balanced our bodies, minds and spirits.
The strength we have found is not our own. If all I had to depend on was myself during this time then I would not get out of bed in the mornings. I would still be experiencing the gut wrenching, heart breaking physical pain of not having her here with me. I know this because I was there following the funeral. For a few days I shut out God, family and friends. I went to the loneliest, darkest place I have ever been in my life. I saw life without spirituality, without appreciation for loved ones. It is a place I do not wish to ever go to again in my life. It was not myself that pulled me from this place. I did not or do not have the strength for that. It was the Lord that did not leave me, nor forsake me even in the darkest moments. It was the genuine kindness and love of family and friends that pulled me from the darkness of self loathing and self pity. So again we thank you all for lifting us in prayer when we did not have the strength to do so ourselves, for the overwhelming gestures of kindness and love that you have given us. Mostly we thank you for loving Bella and letting her be a part of your life.
There are still good days and bad days, good moments and bad moments. There are limitations for what I can handle in life right now. There are situations in which I choose not to put myself in because I don't trust my emotions. The hustle and bustle of life around us seems overwhelming at times. There are moments of guilt in moving forward without her. There is and probably always will be a craving to touch her, see her, smell her. There are moments when I close my eyes and picture every fold of her skin, every scar, every detail of her face just because I am scared of one day not being able to remember those things. But mostly there is hope. Hope that there is life ahead that will always be a testimony to the beauty of Bella...
We love you all. We thank you all. We ask that you allow us to pray for you as well. Please let our family know of any prayer requests that you may have or know of.
Much love to all
Telisha
The strength we have found is not our own. If all I had to depend on was myself during this time then I would not get out of bed in the mornings. I would still be experiencing the gut wrenching, heart breaking physical pain of not having her here with me. I know this because I was there following the funeral. For a few days I shut out God, family and friends. I went to the loneliest, darkest place I have ever been in my life. I saw life without spirituality, without appreciation for loved ones. It is a place I do not wish to ever go to again in my life. It was not myself that pulled me from this place. I did not or do not have the strength for that. It was the Lord that did not leave me, nor forsake me even in the darkest moments. It was the genuine kindness and love of family and friends that pulled me from the darkness of self loathing and self pity. So again we thank you all for lifting us in prayer when we did not have the strength to do so ourselves, for the overwhelming gestures of kindness and love that you have given us. Mostly we thank you for loving Bella and letting her be a part of your life.
There are still good days and bad days, good moments and bad moments. There are limitations for what I can handle in life right now. There are situations in which I choose not to put myself in because I don't trust my emotions. The hustle and bustle of life around us seems overwhelming at times. There are moments of guilt in moving forward without her. There is and probably always will be a craving to touch her, see her, smell her. There are moments when I close my eyes and picture every fold of her skin, every scar, every detail of her face just because I am scared of one day not being able to remember those things. But mostly there is hope. Hope that there is life ahead that will always be a testimony to the beauty of Bella...
We love you all. We thank you all. We ask that you allow us to pray for you as well. Please let our family know of any prayer requests that you may have or know of.
Much love to all
Telisha
Wednesday, February 23, 2011
Her final days on Earth...
In the darkness I have been blessed with memories of her final days on Earth. Memories that make me see the beautiful gifts that God gave us before taking her away. Thru these memories I can at least let go of the shock, I can say honestly that somewhere deep inside God was preparing me to let go.
The weeks before she passed I had said many times to myself and others, what can we do to make her life in the hospital more enjoyable. I had a renewed energy after the physical exhaustion of our long term hospital stay that was unexplainable. I told Chris we are starting "operation:get Bella home" I had spent hours researching alternative therapies and treatment for her edema. I thought that if we could get that fixed then we could move forward. Here are a few of the memories of the days proceeding her death...
The Sunday before she passed I awoke that morning determined to indulge Bella in hydrotherapy, something that she had greatly enjoyed during her time at Centennial but had not been practiced since. With permission from the Dr I created my own hydrotherapy set up for her. I found the perfect tub and had the perfect nurse on that day to get it done. She was emerged into a jacuzzi bath where I know her body had to feel lighter and more relaxed. She submerged her hands, arms, feet and legs without a fight and looked at peace. Upon removing her from the water where she was free from tape, wires and clothing, I massaged her whole body with lotion. Then without any help I put all of her wires, feeding tube, trach needs, etc back into place. I dressed her in her signature pink dress and hairbow. I layed a teddy bear beside her that played the sound of the ocean in her ear. And I watched her sleep more soundly than I ever have before. She was glowing, pink & beautiful. My sister and brother in law went by to see her later that night and without knowing about our day they told me how much better she looked and that she had smiled in her sleep at them. That was their last Bella smile.
On Monday she started having some respiratory issues and the edema had moved into her face more. However we were blessed with a brilliant Dr, team of nurses and nurse practitioners that knew her well. With some changes of her vent and prayers from all of you guys she stabilized. I had wanted to do her hydrotherapy again, I had wanted to pick her up and play but I knew that she was uncomfortable so instead I opted to crawl into her bed and snuggle behind her. I caressed her, massaged her, sang to her, rested with her and smelled her. I spent the entire day with her.
The remainder of the memories that week are not quite as detailed. I know that she was cared for by all of her primary nurses that week, they each got the gift of caring for her one last time before she passed. There were a few days where we put her in a swing and she relaxed there for hours. There were massages from Chris. There were snuggles from me. I read her our favorite book. I introduced her to Billy Joel. We opened up the blinds and let the sunshine pour into her room. We dressed her in new dresses I had just bought her for Valentines Day. We gave her lollypops and sugar water. She was surrounded in love every day that week.
The most vivid memory that I have now that should have prepared me for the phone call is this. Every day since Bella was born I have prayed with my hands on her asking the Lord to fill her with light, love and life. Every day I have had a visual image of Jesus sending light from heaven and filling her body. Every day for almost 9 months. A few days before she passed I said my usual prayer with my eyes closed waiting to see the light pour into her. For the first time in 9 months there was no light. At the time I blamed myself for not being tuned in, being distracted, or not being in constant communication with God that day. I told a friend that was familiar with my ritual that I could not tune in. She knew what that meant but I did not until she was gone.
The day she passed I had spent the first part of the day with Dylan at the zoo and the second half with Bella. This was my usual Tuesday & Thursday schedule since Dylan is out of school. One of her primary nurses that loved her so so much was on that day. When I arrived I found Bella in her chair, sitting upright with her princess tiara on her head, adorned in pink of course. She was over the chair after I got there and we got her out for me to hold. My usual holding position is her cradled in my arms, it is the only one she will usually tolerate well and gives me the opportunity to see her face. That day I put her on my shoulder, rocked her and sang to her. She loved it. When I got her back in bed she seemed exhausted but content from the day's events. Once again she slept soundly before I left.
The night that Bella passed we were blessed again with yet another primary nurse that loves Bella so so much. We called to check in before bed and she was doing great, sleeping soundly. My phone rang at 2:30 am, it was Vanderbilt's number. It was a person I was unfamiliar with. I don't know what she said at that time but I knew that this was it. I just knew it. I threw on clothing as Chris desperately tried to find someone that was awake at that hour to come stay with Dylan. I did not want to face this alone but I knew that if I waited for another minute I would not get there in time. I flew thru red lights, stop signs, literally sprinted thru the hallways of the hospital to get to her. This part gets blurry. I arrived to find them doing chest compressions and a full team of code specialists in her room. Everyone was moving fast and orders were being yelled. I fell into a chair. I started to talk to God, begging, bargaining, trying to trade places with her. I wish I could say that I gave her to Him willingly but that is not the case. That is not the case at all and that is the last conversation that we have had since. After knowing that all had been done that could be done, if I waited one more second she would die not in my arms I had them stop. They put her into my arms and she passed a few seconds later and just a few seconds after that Chris was by our side.
These memories show me a kind and loving God that gave us the most peaceful ending to such an amazing life. There were no signs of struggle that week, there were no signs of greater pain, she was stable for her condition. In the end it was her heart that gave out, not her lungs. On her 9 month birthday exactly. We have the security of knowing that she was surrounded that week with medical professionals that did everything they could do for her. Medial professionals that had not given up on her. We let them do an autopsy because maybe it will help them to save another baby in the future. But it doesn't matter to us what the report is, I would rather not know. We know with complete and total faith that it was her time to go, if it had not been then God would have overcome whatever it was as He always did in the past. I owe Him an apology and I miss our daily conversations. I am not mad at God for taking her but I am not ready to apologize to Him either for my selfish needs of having her with me. Our conversations and my prayers will come as the peace and gratitude start to take away some of the pain.
We have been lost since her death. Not knowing where to go or what to do. Just going thru the emotions of calmness one minute and complete hysteria the next. Sleep is not my friend. Dylan has asked several times for God to send everyone back down from heaven. We have no ideas where to go with life from here. We are going to journey to the beach for a while. We are going to try to find some big Bella smiles in the sunshine, hear the sound of her breaths in the waves and take ourselves away from a life that was built around her existence here on Earth. I hope to begin my conversations with God, I hope to be able to see that same light that Jesus poured into Bella for all these months but this time being poured into myself, Chris & Dylan. A light that will bring us back to life, a light that will begin to heal our pain, a light that will lead us down a path of God's purpose for us in this life.
We cannot express our gratitude in words for all of those that came to her service, sent their thoughts, sent their prayers, filled our home with beautiful flowers and good food. We cannot express our gratitude in words for all of those that assisted in giving her a beautiful service that celebrated her life. And once again we cannot even begin to thank all of the nurses, doctors, respiratory therapists, nurse practitioners and surgeons that assisted in giving us these past 9 months.
Much love to you all
Telisha
The weeks before she passed I had said many times to myself and others, what can we do to make her life in the hospital more enjoyable. I had a renewed energy after the physical exhaustion of our long term hospital stay that was unexplainable. I told Chris we are starting "operation:get Bella home" I had spent hours researching alternative therapies and treatment for her edema. I thought that if we could get that fixed then we could move forward. Here are a few of the memories of the days proceeding her death...
The Sunday before she passed I awoke that morning determined to indulge Bella in hydrotherapy, something that she had greatly enjoyed during her time at Centennial but had not been practiced since. With permission from the Dr I created my own hydrotherapy set up for her. I found the perfect tub and had the perfect nurse on that day to get it done. She was emerged into a jacuzzi bath where I know her body had to feel lighter and more relaxed. She submerged her hands, arms, feet and legs without a fight and looked at peace. Upon removing her from the water where she was free from tape, wires and clothing, I massaged her whole body with lotion. Then without any help I put all of her wires, feeding tube, trach needs, etc back into place. I dressed her in her signature pink dress and hairbow. I layed a teddy bear beside her that played the sound of the ocean in her ear. And I watched her sleep more soundly than I ever have before. She was glowing, pink & beautiful. My sister and brother in law went by to see her later that night and without knowing about our day they told me how much better she looked and that she had smiled in her sleep at them. That was their last Bella smile.
On Monday she started having some respiratory issues and the edema had moved into her face more. However we were blessed with a brilliant Dr, team of nurses and nurse practitioners that knew her well. With some changes of her vent and prayers from all of you guys she stabilized. I had wanted to do her hydrotherapy again, I had wanted to pick her up and play but I knew that she was uncomfortable so instead I opted to crawl into her bed and snuggle behind her. I caressed her, massaged her, sang to her, rested with her and smelled her. I spent the entire day with her.
The remainder of the memories that week are not quite as detailed. I know that she was cared for by all of her primary nurses that week, they each got the gift of caring for her one last time before she passed. There were a few days where we put her in a swing and she relaxed there for hours. There were massages from Chris. There were snuggles from me. I read her our favorite book. I introduced her to Billy Joel. We opened up the blinds and let the sunshine pour into her room. We dressed her in new dresses I had just bought her for Valentines Day. We gave her lollypops and sugar water. She was surrounded in love every day that week.
The most vivid memory that I have now that should have prepared me for the phone call is this. Every day since Bella was born I have prayed with my hands on her asking the Lord to fill her with light, love and life. Every day I have had a visual image of Jesus sending light from heaven and filling her body. Every day for almost 9 months. A few days before she passed I said my usual prayer with my eyes closed waiting to see the light pour into her. For the first time in 9 months there was no light. At the time I blamed myself for not being tuned in, being distracted, or not being in constant communication with God that day. I told a friend that was familiar with my ritual that I could not tune in. She knew what that meant but I did not until she was gone.
The day she passed I had spent the first part of the day with Dylan at the zoo and the second half with Bella. This was my usual Tuesday & Thursday schedule since Dylan is out of school. One of her primary nurses that loved her so so much was on that day. When I arrived I found Bella in her chair, sitting upright with her princess tiara on her head, adorned in pink of course. She was over the chair after I got there and we got her out for me to hold. My usual holding position is her cradled in my arms, it is the only one she will usually tolerate well and gives me the opportunity to see her face. That day I put her on my shoulder, rocked her and sang to her. She loved it. When I got her back in bed she seemed exhausted but content from the day's events. Once again she slept soundly before I left.
The night that Bella passed we were blessed again with yet another primary nurse that loves Bella so so much. We called to check in before bed and she was doing great, sleeping soundly. My phone rang at 2:30 am, it was Vanderbilt's number. It was a person I was unfamiliar with. I don't know what she said at that time but I knew that this was it. I just knew it. I threw on clothing as Chris desperately tried to find someone that was awake at that hour to come stay with Dylan. I did not want to face this alone but I knew that if I waited for another minute I would not get there in time. I flew thru red lights, stop signs, literally sprinted thru the hallways of the hospital to get to her. This part gets blurry. I arrived to find them doing chest compressions and a full team of code specialists in her room. Everyone was moving fast and orders were being yelled. I fell into a chair. I started to talk to God, begging, bargaining, trying to trade places with her. I wish I could say that I gave her to Him willingly but that is not the case. That is not the case at all and that is the last conversation that we have had since. After knowing that all had been done that could be done, if I waited one more second she would die not in my arms I had them stop. They put her into my arms and she passed a few seconds later and just a few seconds after that Chris was by our side.
These memories show me a kind and loving God that gave us the most peaceful ending to such an amazing life. There were no signs of struggle that week, there were no signs of greater pain, she was stable for her condition. In the end it was her heart that gave out, not her lungs. On her 9 month birthday exactly. We have the security of knowing that she was surrounded that week with medical professionals that did everything they could do for her. Medial professionals that had not given up on her. We let them do an autopsy because maybe it will help them to save another baby in the future. But it doesn't matter to us what the report is, I would rather not know. We know with complete and total faith that it was her time to go, if it had not been then God would have overcome whatever it was as He always did in the past. I owe Him an apology and I miss our daily conversations. I am not mad at God for taking her but I am not ready to apologize to Him either for my selfish needs of having her with me. Our conversations and my prayers will come as the peace and gratitude start to take away some of the pain.
We have been lost since her death. Not knowing where to go or what to do. Just going thru the emotions of calmness one minute and complete hysteria the next. Sleep is not my friend. Dylan has asked several times for God to send everyone back down from heaven. We have no ideas where to go with life from here. We are going to journey to the beach for a while. We are going to try to find some big Bella smiles in the sunshine, hear the sound of her breaths in the waves and take ourselves away from a life that was built around her existence here on Earth. I hope to begin my conversations with God, I hope to be able to see that same light that Jesus poured into Bella for all these months but this time being poured into myself, Chris & Dylan. A light that will bring us back to life, a light that will begin to heal our pain, a light that will lead us down a path of God's purpose for us in this life.
We cannot express our gratitude in words for all of those that came to her service, sent their thoughts, sent their prayers, filled our home with beautiful flowers and good food. We cannot express our gratitude in words for all of those that assisted in giving her a beautiful service that celebrated her life. And once again we cannot even begin to thank all of the nurses, doctors, respiratory therapists, nurse practitioners and surgeons that assisted in giving us these past 9 months.
Much love to you all
Telisha
Sunday, February 20, 2011
Updated Service Arrangements- Monday, February 21, 2011
Visitation & Viewing w/ Service to follow
February 21, 2011
9:30 AM
Belmont United Methodist Church
2007 Acklen Avenue
Nashville, TN 37212
Burial immediately following Service
Harpeth Hills Memory Garden
9090 Highway 100
Nashville, TN 37221
(no processional but directions will be provided at service)
Gathering to follow Burial
The Villages of Morning Side
(New Clubhouses)
9000 Sunrise Circle
Franklin, TN 37067
All are invited to celebrate the beauty of Bella....
February 21, 2011
9:30 AM
Belmont United Methodist Church
2007 Acklen Avenue
Nashville, TN 37212
Burial immediately following Service
Harpeth Hills Memory Garden
9090 Highway 100
Nashville, TN 37221
(no processional but directions will be provided at service)
Gathering to follow Burial
The Villages of Morning Side
(New Clubhouses)
9000 Sunrise Circle
Franklin, TN 37067
All are invited to celebrate the beauty of Bella....
Saturday, February 19, 2011
Day 1 with Bella in heaven
This blog shall continue as Bella will be in our lives and hearts forever. It shall ever be a reminder to me of the many ways she impacted this world in just 9 months and how we are better people for knowing her.
But tonight as many times before it serves as my therapy. I am lost. Simply put, just lost. I try to pray. I try to find comfort in knowing that she is in a better place. I try to visualize our grandmothers and my Aunt Daisy holding her tight in heaven. I try to be grateful for the 9 months that we were not suppose to have. I try all of these things but it still feels as if my heart is broken in half and I am completely falling apart. The longing to hold her, the longing to get a Bella smile, the longing to take care of her are all too strong to find peace. I know that it will come, I know that this is part of the process. I just never knew that it was humanly possible to hurt this much. Yesterday I should have been planning a way to celebrate her 9 month birthday, instead I was planning her funeral. I always said that I would just be grateful for the time that we had if God decided it was not meant for her to remain. I am grateful but I am also selfish. I want more. I want to hold her again. I want to have her here on this earth with me, I am her mother and I want to take care of her. I just want my baby. I am not bitter or angry, I just want her with all of my being.
I really hope that the strength comes over the next few days before her service on Monday. I want to fully celebrate her life and her time on this earth but in order to really do that I have to let go of some of the pain of losing her. I wish I had this inspirational story this evening of how I have found peace in her passing. That is not my story for now. So once again I ask for you to carry me in your prayers. I ask that somehow the words come from my heart to ask for the peace that the Lord has surrounded me with this whole time. And once again I thank you....
Much love to you all
Telisha
But tonight as many times before it serves as my therapy. I am lost. Simply put, just lost. I try to pray. I try to find comfort in knowing that she is in a better place. I try to visualize our grandmothers and my Aunt Daisy holding her tight in heaven. I try to be grateful for the 9 months that we were not suppose to have. I try all of these things but it still feels as if my heart is broken in half and I am completely falling apart. The longing to hold her, the longing to get a Bella smile, the longing to take care of her are all too strong to find peace. I know that it will come, I know that this is part of the process. I just never knew that it was humanly possible to hurt this much. Yesterday I should have been planning a way to celebrate her 9 month birthday, instead I was planning her funeral. I always said that I would just be grateful for the time that we had if God decided it was not meant for her to remain. I am grateful but I am also selfish. I want more. I want to hold her again. I want to have her here on this earth with me, I am her mother and I want to take care of her. I just want my baby. I am not bitter or angry, I just want her with all of my being.
I really hope that the strength comes over the next few days before her service on Monday. I want to fully celebrate her life and her time on this earth but in order to really do that I have to let go of some of the pain of losing her. I wish I had this inspirational story this evening of how I have found peace in her passing. That is not my story for now. So once again I ask for you to carry me in your prayers. I ask that somehow the words come from my heart to ask for the peace that the Lord has surrounded me with this whole time. And once again I thank you....
Much love to you all
Telisha
Service Arrangements
The funeral arrangements for Bella will be Monday, Feb. 21st, 2011 at 10am at Belmont United Methodist Church ( 2007 Acklen Ave, Nashville, TN 37212) with burial to follow at Harpeth Hills Memory Gardens (9090 Highway 100, Nashville, TN 37221) All are invited to celebrate Bella's beautiful life......
Friday, February 18, 2011
Bella passed away this morning in my arms around 3:15 am on her 9 month birthday. There are no words for now to describe the pain, shock & void that we are feeling at this time. We pray for peace and continued faith that the Lord will carry us thru this time. Thank you all for your prayers. We will update soon with information on her service.
Wednesday, February 9, 2011
The mystery of the big fat baby...
So sorry for the delayed update, was hoping to have more time to devote but Dylan has been sick with allergies/asthma which has kept him home from school. This puts our normally hectic schedule over the top but he seems to be on the mend now and we can hopefully go back to our regularly scheduled programs!
Well our 18 pound miracle child is once again a mystery to medical science....Her massive edema does not seem to be going away. We have had an incredibly, brilliant Dr on the past two weeks that has been running numerous tests to see what is going on. At this point he thinks there must be a blockage in her lymphatic system that is making her retain fluid in her third spacing. He is going to run some more tests this week to confirm. If this is the case then the only thing we can do is pray that the body creates a new "course" for this fluid to flow back to the heart and be pumped into the system ( I think this is correct, still completing my crash course in lymphatic system this week...) There is really no quick fix if this is the case but we sure do appreciate all prayers to see if God can lend His hand again on this one. We will be slow to make progress until it is resolved and all of this edema makes it possible for skin break down and infection. We have been blessed so far to avoid that. We hope to continue.
We discovered after a few days of respiratory issues that Bella has outgrown her trach. We are ever thankful that we can blame this on something else besides her crappy lungs for once! When all of her breathing accessories are functioning properly I think we will really start to make some progress on lowering her vent settings. We have already been able to lower her rate from 50 to 40 and we are seeing improved blood gases. Her oxygen remains around 50% but hoping to be able to bring this down with the new trach and once fluid comes off.
With all things considered the little fighter is holding her own. The additional fluid is not very comfortable so we aren't getting many big Bella smiles these days and she seems to be sleeping quite a bit but she sure is sweet! Praying that the Lord can comfort her and assist moving this process along so we can play again soon...
So that is all for now. We will keep you posted as we know more. Hoping you all are staying warm and healthy! Thank you as always for your continued prayers, when prayers go up blessings come down....
Much love to you all
Telisha
Well our 18 pound miracle child is once again a mystery to medical science....Her massive edema does not seem to be going away. We have had an incredibly, brilliant Dr on the past two weeks that has been running numerous tests to see what is going on. At this point he thinks there must be a blockage in her lymphatic system that is making her retain fluid in her third spacing. He is going to run some more tests this week to confirm. If this is the case then the only thing we can do is pray that the body creates a new "course" for this fluid to flow back to the heart and be pumped into the system ( I think this is correct, still completing my crash course in lymphatic system this week...) There is really no quick fix if this is the case but we sure do appreciate all prayers to see if God can lend His hand again on this one. We will be slow to make progress until it is resolved and all of this edema makes it possible for skin break down and infection. We have been blessed so far to avoid that. We hope to continue.
We discovered after a few days of respiratory issues that Bella has outgrown her trach. We are ever thankful that we can blame this on something else besides her crappy lungs for once! When all of her breathing accessories are functioning properly I think we will really start to make some progress on lowering her vent settings. We have already been able to lower her rate from 50 to 40 and we are seeing improved blood gases. Her oxygen remains around 50% but hoping to be able to bring this down with the new trach and once fluid comes off.
With all things considered the little fighter is holding her own. The additional fluid is not very comfortable so we aren't getting many big Bella smiles these days and she seems to be sleeping quite a bit but she sure is sweet! Praying that the Lord can comfort her and assist moving this process along so we can play again soon...
So that is all for now. We will keep you posted as we know more. Hoping you all are staying warm and healthy! Thank you as always for your continued prayers, when prayers go up blessings come down....
Much love to you all
Telisha
Sunday, January 30, 2011
The NICU experience...8 months later
Well it has been obvious that the posts to the blog have been few and far between these days. I could easily blame this on lack of time however the past week has shed some light on what may have really been going on...
The initial blog was started by Chris to inform everyone of the ever changing status of Bella's journey. However over time it morphed into my perspective on Bella's journey, God's ever present hand and an outlet for me to vent or express emotions that I do not allow myself to express or sometimes feel while at her bedside. When she is present the only energy we allow ourselves to pour into her is that of hope. For many, many months the emotions and the words flowed when I would sit down to write. Then they stopped. Maybe I couldn't get past the many walls that one must build to tolerate hearing the same regurigitated prognosis without completely breaking down. Maybe it was God's way of helping me to function in our situation. Maybe I just had no words. All I know now is that I feel an "awakening." An awakening physically, spiritually and mentally. I can't do it justice with words but for the first time in months I am alive.
With this awakening I hear music that in the past I have loved and it hits me again in a whole new way. I find myself needing physical activity, needing to feel my body getting stronger and healthier. I find myself craving, absolutely craving, the company of my husband. Not as my "relief" but as my companion. I have an awareness of the moments that I need to just really absorb and soak up without the guilt of feeling like I need to be somewhere else. I am mesmerized by Dylan's laughter and Bella's smiles. My prayer and meditation times have become so incredibly deep and personal that I can hear the Lord speaking to me and I can feel His hand upon me.
With this new awakening also comes "flashbacks." Parts of the past 8 months that maybe I wasn't ready to deal with at the time. Maybe my mind is just able to process what happened. The flashbacks hit like bricks and are so clear in my head that I am right there again. Specifically the night that Bella was born. Her previous caretakers know this because it is in our charts and we have discussed but to this date I have never mentioned this to anyone else. Maybe putting it out there now will help me to lay it to rest or draw some strength from it when it surfaces. Most of you know that I was on hospital bedrest for a very brief period of time before her arrival. The day that Bella was born I was told that I was very stable for my condition and that things looked good for the moment.(maybe it was at this time that I became a skeptic of diagnosis) At about 6:50 pm that night I got up to go to the bathroom. That is when Bella was born. I was alone in the bathroom when she came. Luckily I was able to pull the red string by the toilet and they responded in a matter of minutes. But until they arrived I held her in my hands. I could feel her tiny feet kicking and all I could think was that I had lost my daughter. All I had heard was that babies are not viable until 24 weeks, she was 22 weeks and 4 days. Much of what happened afterwards is a blur to me as I lost a great amount of blood and was in and out until they got it to stop just moments before taking me to the OR. I very clearly remember the agony of thinking that I had lost her. It was a pain like I had never ever felt before in my entire life. I remember the Nurse Practioner coming to our bedside and telling us that Bella was alive for now. I remember her saying that Bella's heartbeat was strong and they wanted to give her the chance that she deserves to survive. I remember her telling us that the chances were less than 5 % that she would make it thru the night. I remember refusing pain medicines so that I would be awake to see her. I remember seeing her for the first time. There was no shock for me as to the many many devices that were attached to her. I just remember that when they allowed me to place my finger in her hand that she grasped her fingers around it. It was at that moment that I knew as a mother she was fighting to stay alive. It was at that time that I knew that if she was fighting then I would fight for her. It is the memory that comes into my head when I hear unfavorable diagnosis about her future. It is the memory that carries me thru each day.
So the flashbacks are heavy. They are crippling when they come. But in some weird way they are allowing me to feel again, to live again. The "awakening" is life having a whole new set of eyes and ears. It is so incredible that I truly feel blessed to be in out situation.
Well the NICU 8 months later...I can't say it gets any easier. It doesn't, in all honesty it gets harder. The reality sets in that this is not a temporary situation, your whole world has changed forever. Close personal relationships change as those that love you battle with the helplessness of not being able to help you or some become overwhelmed with it in general so they pull away. God balances this with the amazing support of strangers and the constant support of old or new found friends & family. But for me at least I see life more clearly, I value life more dearly and I know with no uncertainty that there is a God that loves each and everyone of us. His love is so unconditional and ever present that He can and will carry us thru any hardship in our life. I know that I could never ever do this without Him.
8 months later I feel more alive than I felt going into this. I feel more certain of our path and more appreciative of our past. There are days where the walls start closing in but with the flashbacks of what could have happened it stops and you just appreciate it for what it is now.
I am certain a good therapist would lable this as "post traumatic stress disorder" But I like to think that this is simply " walking humbly with thy Lord"
Thank you for being my therapists, our prayer warriors, our advocates and most hopefully our Brother and Sisters in Christ.
Much love to all
Telisha
The initial blog was started by Chris to inform everyone of the ever changing status of Bella's journey. However over time it morphed into my perspective on Bella's journey, God's ever present hand and an outlet for me to vent or express emotions that I do not allow myself to express or sometimes feel while at her bedside. When she is present the only energy we allow ourselves to pour into her is that of hope. For many, many months the emotions and the words flowed when I would sit down to write. Then they stopped. Maybe I couldn't get past the many walls that one must build to tolerate hearing the same regurigitated prognosis without completely breaking down. Maybe it was God's way of helping me to function in our situation. Maybe I just had no words. All I know now is that I feel an "awakening." An awakening physically, spiritually and mentally. I can't do it justice with words but for the first time in months I am alive.
With this awakening I hear music that in the past I have loved and it hits me again in a whole new way. I find myself needing physical activity, needing to feel my body getting stronger and healthier. I find myself craving, absolutely craving, the company of my husband. Not as my "relief" but as my companion. I have an awareness of the moments that I need to just really absorb and soak up without the guilt of feeling like I need to be somewhere else. I am mesmerized by Dylan's laughter and Bella's smiles. My prayer and meditation times have become so incredibly deep and personal that I can hear the Lord speaking to me and I can feel His hand upon me.
With this new awakening also comes "flashbacks." Parts of the past 8 months that maybe I wasn't ready to deal with at the time. Maybe my mind is just able to process what happened. The flashbacks hit like bricks and are so clear in my head that I am right there again. Specifically the night that Bella was born. Her previous caretakers know this because it is in our charts and we have discussed but to this date I have never mentioned this to anyone else. Maybe putting it out there now will help me to lay it to rest or draw some strength from it when it surfaces. Most of you know that I was on hospital bedrest for a very brief period of time before her arrival. The day that Bella was born I was told that I was very stable for my condition and that things looked good for the moment.(maybe it was at this time that I became a skeptic of diagnosis) At about 6:50 pm that night I got up to go to the bathroom. That is when Bella was born. I was alone in the bathroom when she came. Luckily I was able to pull the red string by the toilet and they responded in a matter of minutes. But until they arrived I held her in my hands. I could feel her tiny feet kicking and all I could think was that I had lost my daughter. All I had heard was that babies are not viable until 24 weeks, she was 22 weeks and 4 days. Much of what happened afterwards is a blur to me as I lost a great amount of blood and was in and out until they got it to stop just moments before taking me to the OR. I very clearly remember the agony of thinking that I had lost her. It was a pain like I had never ever felt before in my entire life. I remember the Nurse Practioner coming to our bedside and telling us that Bella was alive for now. I remember her saying that Bella's heartbeat was strong and they wanted to give her the chance that she deserves to survive. I remember her telling us that the chances were less than 5 % that she would make it thru the night. I remember refusing pain medicines so that I would be awake to see her. I remember seeing her for the first time. There was no shock for me as to the many many devices that were attached to her. I just remember that when they allowed me to place my finger in her hand that she grasped her fingers around it. It was at that moment that I knew as a mother she was fighting to stay alive. It was at that time that I knew that if she was fighting then I would fight for her. It is the memory that comes into my head when I hear unfavorable diagnosis about her future. It is the memory that carries me thru each day.
So the flashbacks are heavy. They are crippling when they come. But in some weird way they are allowing me to feel again, to live again. The "awakening" is life having a whole new set of eyes and ears. It is so incredible that I truly feel blessed to be in out situation.
Well the NICU 8 months later...I can't say it gets any easier. It doesn't, in all honesty it gets harder. The reality sets in that this is not a temporary situation, your whole world has changed forever. Close personal relationships change as those that love you battle with the helplessness of not being able to help you or some become overwhelmed with it in general so they pull away. God balances this with the amazing support of strangers and the constant support of old or new found friends & family. But for me at least I see life more clearly, I value life more dearly and I know with no uncertainty that there is a God that loves each and everyone of us. His love is so unconditional and ever present that He can and will carry us thru any hardship in our life. I know that I could never ever do this without Him.
8 months later I feel more alive than I felt going into this. I feel more certain of our path and more appreciative of our past. There are days where the walls start closing in but with the flashbacks of what could have happened it stops and you just appreciate it for what it is now.
I am certain a good therapist would lable this as "post traumatic stress disorder" But I like to think that this is simply " walking humbly with thy Lord"
Thank you for being my therapists, our prayer warriors, our advocates and most hopefully our Brother and Sisters in Christ.
Much love to all
Telisha
Update (lost track of # of days!)
Despite the fact that she gained almost 2,000 grams from all of this fluid retention in the past 4 weeks Miss Bella has been holding her own. We had a scare yesterday with a spiked fever of 103 but all of her blood work looks fine. We think there could be some fluid on her lungs and a possible UTI causing it. We will see what the new Dr thinks tomorrow...
The past few weeks we have just primarily been focused on trying to get the fluid off of her. We have been trying to change her position often, move her around as tolerated and doing various massages to help break it up. Today she has started to have some big wet diapers so we may see some improvements this week. Even though we have been limited on moving forward we still managed to wean her nitric to 4 and lower some vent settings this week. We are also seeing that once the fluid is off she will be able to initiate some breaths on her own which is hopeful! I heard from one of her favorite nurses this evening that she even got a smile out of her and we haven't seen those in quite a few days.
The past couple of weeks with this past Dr have been exactly what we needed. It was the first time in quite a while that we didn't get the "your daughter is going to die" speech. I don't know if she has a different opinion or if she just doesn't feel the need to beat us over the head with it but it was a VERY nice change of pace. Not once did she mention "chronic care facility" either!!! We appreciated the fact that she focused on what we can "fix" now and not trying to prove her future or existing disabilities. She gets that it doesn't matter to us and should NOT change the way that she is cared for.
Speaking of that...this is where we are today with that situation. The Dr that started the whole chronic care facility discussion also brought in the palliative care arm of the hospital to get involved in our case. Supposedly this is another arm of hospice care but not just with terminally ill kids but chronically ill. We were told that they would assist us in making all of the arrangements for her to come home and if she needed her comfort meds once she is home they could assist with that as well. HOWEVER the only thing we have seen out of them was a 30 minute interagation of how we need to do a DNR order for her and lecture that based on their 5 minute evaluation she would not see, hear, walk or talk...blah blah blah...Chris did not respond to any of this as they had hoped :) So they came looking for me the next day (like 3-4 times) to discuss chronic care facility options. I politely and not so politely told them that we really weren't interested in anything they have to say or even discussing the matter with them at this point. Thank you Lord we have not seen them since and are praying that we won't unless they are truly needed. However I was pretty fired up about it so decided to dig a little further into this "12 month scope of care" that keeps getting thrown around. I was told via email that "there is no magic button that I am aware of that when a child turns a magic age, that they are denied care in the NICU." This is comforting for now that if Bella is progressing we will not get kicked out in May. However I still question why we have been told this by numerous individuals and the chronic care facility has been mentioned so often. I also question why folks that have gone before us have encountered the same scenario. I also asked if doing the chronic care wing was an option and was told that the entire hospital needs more beds and there is no quick fix that would provide the things I had mentioned in my previous blog. I am not convinced of this either but before I open my mouth again about this I am doing some homework and will fill you guys in on what I find...Sometimes we have to speak things into existence and even if this can't be done for Bella it is something that I feel passionate about and would love to make happen for those that follow in our footsteps. Thank you all for all of the offers to assist in any way that you can. I will fill you in on any possible options to make this happen. Again I don't think it is inappropriate at all as a parent to express a very real need of our community hospital that Nashville so generously donates to, so feel free to pass along my previous blog to anyone that may have an opinion or would like for their intended donations to specifically go towards this idea.
So for now our strategy is not to even discuss the chronic care facilities with anyone at Vanderbilt that would like to discuss it. Our goal is to bring Bella home when she is ready to come home. Our goal is to make sure that everyone we are working with has that exact same goal. We pray and hope that will happen by May. We trust that the Lord will provide us with alternatives if not...
Tonight I will dream of and pray for Bella smiles and big wet diapers. The combination of both could get her home if that is the Lord's will. So far He has shown us no reason to doubt otherwise. Our eyes are on Him and His constant presence in this journey...
Thank you for the continued prayers, it is all that we need at this time...
Much love to you all
Telisha
The past few weeks we have just primarily been focused on trying to get the fluid off of her. We have been trying to change her position often, move her around as tolerated and doing various massages to help break it up. Today she has started to have some big wet diapers so we may see some improvements this week. Even though we have been limited on moving forward we still managed to wean her nitric to 4 and lower some vent settings this week. We are also seeing that once the fluid is off she will be able to initiate some breaths on her own which is hopeful! I heard from one of her favorite nurses this evening that she even got a smile out of her and we haven't seen those in quite a few days.
The past couple of weeks with this past Dr have been exactly what we needed. It was the first time in quite a while that we didn't get the "your daughter is going to die" speech. I don't know if she has a different opinion or if she just doesn't feel the need to beat us over the head with it but it was a VERY nice change of pace. Not once did she mention "chronic care facility" either!!! We appreciated the fact that she focused on what we can "fix" now and not trying to prove her future or existing disabilities. She gets that it doesn't matter to us and should NOT change the way that she is cared for.
Speaking of that...this is where we are today with that situation. The Dr that started the whole chronic care facility discussion also brought in the palliative care arm of the hospital to get involved in our case. Supposedly this is another arm of hospice care but not just with terminally ill kids but chronically ill. We were told that they would assist us in making all of the arrangements for her to come home and if she needed her comfort meds once she is home they could assist with that as well. HOWEVER the only thing we have seen out of them was a 30 minute interagation of how we need to do a DNR order for her and lecture that based on their 5 minute evaluation she would not see, hear, walk or talk...blah blah blah...Chris did not respond to any of this as they had hoped :) So they came looking for me the next day (like 3-4 times) to discuss chronic care facility options. I politely and not so politely told them that we really weren't interested in anything they have to say or even discussing the matter with them at this point. Thank you Lord we have not seen them since and are praying that we won't unless they are truly needed. However I was pretty fired up about it so decided to dig a little further into this "12 month scope of care" that keeps getting thrown around. I was told via email that "there is no magic button that I am aware of that when a child turns a magic age, that they are denied care in the NICU." This is comforting for now that if Bella is progressing we will not get kicked out in May. However I still question why we have been told this by numerous individuals and the chronic care facility has been mentioned so often. I also question why folks that have gone before us have encountered the same scenario. I also asked if doing the chronic care wing was an option and was told that the entire hospital needs more beds and there is no quick fix that would provide the things I had mentioned in my previous blog. I am not convinced of this either but before I open my mouth again about this I am doing some homework and will fill you guys in on what I find...Sometimes we have to speak things into existence and even if this can't be done for Bella it is something that I feel passionate about and would love to make happen for those that follow in our footsteps. Thank you all for all of the offers to assist in any way that you can. I will fill you in on any possible options to make this happen. Again I don't think it is inappropriate at all as a parent to express a very real need of our community hospital that Nashville so generously donates to, so feel free to pass along my previous blog to anyone that may have an opinion or would like for their intended donations to specifically go towards this idea.
So for now our strategy is not to even discuss the chronic care facilities with anyone at Vanderbilt that would like to discuss it. Our goal is to bring Bella home when she is ready to come home. Our goal is to make sure that everyone we are working with has that exact same goal. We pray and hope that will happen by May. We trust that the Lord will provide us with alternatives if not...
Tonight I will dream of and pray for Bella smiles and big wet diapers. The combination of both could get her home if that is the Lord's will. So far He has shown us no reason to doubt otherwise. Our eyes are on Him and His constant presence in this journey...
Thank you for the continued prayers, it is all that we need at this time...
Much love to you all
Telisha
Thursday, January 20, 2011
What a Chronic Unit at Vanderbilt would mean to us...
I am overwhelmed with the amount of support, ideas and outreach coming in from my last post. We live in an amazing community and are so blessed to know each of you. Since I have received so much interest in assisting with the idea of the chronic unit I wanted to expand on what it would actually mean to Bella, us and those following our path.
The idea for this did not surface with me. It has been an idea that has been expressed by nurses and parents that came before us. I only know from a brief meeting with the Director of the NICU about a few details of how it could become a possibility sooner rather than later. I have no idea what the needs are to get it done, why it hasn't been done already or where the project currently stands. I was told that there is a wing of the hospital that is being used for over flow from another floor but actually belongs to the NICU where this idea could easily be facilitated.
For Bella this new wing would hopefully mean reorganization of a care team that gives us more continuity. It would hopefully mean that she is only cared for by a staff that is comfortable with her chronic issues. It would mean that she would not see a new Dr every 2 weeks and there would be a care plan created and oversaw by just one person. It would give us a team that celebrates with us her progress which cannot be compared to that of other babies her age. It would mean a larger room for her where we would have room for swings, toys, activity mats and developmental devices to help her improve. It would give her a space where she can not only be a hospital patient but a baby. It would be a nursery, not a small space created for short term stays where the walls start to close in on you. Most importantly it would give her a long term option to manage her care if for some reason she is not ready to come home within a year.
For us it would mean that we can form long term relationships with her Dr's that we can trust. It would hopefully mean that every 2 weeks we do not get the "your daughter is going to die" speech from each new face. It would hopefully mean that they would just allow us to focus on being her parents today because we do not know what tomorrow will bring without the constant need to tell us she will not make it. It would give us a place to sleep so that we could spend the night with her. There are no options besides a small recliner crowded in the corner now. It would give us private bathrooms and a desk for work space so that we could work from the room or maintain daily tasks. It would give us a place to just be her parents and not just a visitor at her bedside. A place to play, a place to learn for her care, a place to build memories, a place to bond with our child....Don't get me wrong we are doing all of those things now but it is a challenge daily to work around the limited space and the constant coming and going since we are not set up to stay there with her.
The solution is simple and the results so rewarding. I don't know why this has not been done in the past. We can all speculate as to various reasons. I don't know why we have heard that "scope of care" is 1 year, the Pediatric ICU is not equipped to handle her needs and that our only option if she should not be ready to come home at that time would be to relocate our family to another state and take Bella away from all that has become familiar to her. I don't know why we were told that a facility with fewer specialists, fewer therapists and higher infection rates is in her "best interest." I think Vanderbilt would be selling themselves very short to say that they do not have the resources available to handle her care. I do know they have done it in the past. I don't know why it is met with such resistance...However I do know that I will do everything in my power to give her the best possible outcome, to enjoy being her Mother in the process of doing it, to give her a quality of life while in the hospital for however long that should be.
I want to be clear that this idea is something that has only been pitched. I am not directly tied to any of the process of getting it done so no idea of where it actually stands. I am simply stating the need for it from a parental view point and encouraging the community to reach out with us to try to get this done.
Thank you all again for your support, for your compassion and for your prayers.
Much love to you all
Telisha
The idea for this did not surface with me. It has been an idea that has been expressed by nurses and parents that came before us. I only know from a brief meeting with the Director of the NICU about a few details of how it could become a possibility sooner rather than later. I have no idea what the needs are to get it done, why it hasn't been done already or where the project currently stands. I was told that there is a wing of the hospital that is being used for over flow from another floor but actually belongs to the NICU where this idea could easily be facilitated.
For Bella this new wing would hopefully mean reorganization of a care team that gives us more continuity. It would hopefully mean that she is only cared for by a staff that is comfortable with her chronic issues. It would mean that she would not see a new Dr every 2 weeks and there would be a care plan created and oversaw by just one person. It would give us a team that celebrates with us her progress which cannot be compared to that of other babies her age. It would mean a larger room for her where we would have room for swings, toys, activity mats and developmental devices to help her improve. It would give her a space where she can not only be a hospital patient but a baby. It would be a nursery, not a small space created for short term stays where the walls start to close in on you. Most importantly it would give her a long term option to manage her care if for some reason she is not ready to come home within a year.
For us it would mean that we can form long term relationships with her Dr's that we can trust. It would hopefully mean that every 2 weeks we do not get the "your daughter is going to die" speech from each new face. It would hopefully mean that they would just allow us to focus on being her parents today because we do not know what tomorrow will bring without the constant need to tell us she will not make it. It would give us a place to sleep so that we could spend the night with her. There are no options besides a small recliner crowded in the corner now. It would give us private bathrooms and a desk for work space so that we could work from the room or maintain daily tasks. It would give us a place to just be her parents and not just a visitor at her bedside. A place to play, a place to learn for her care, a place to build memories, a place to bond with our child....Don't get me wrong we are doing all of those things now but it is a challenge daily to work around the limited space and the constant coming and going since we are not set up to stay there with her.
The solution is simple and the results so rewarding. I don't know why this has not been done in the past. We can all speculate as to various reasons. I don't know why we have heard that "scope of care" is 1 year, the Pediatric ICU is not equipped to handle her needs and that our only option if she should not be ready to come home at that time would be to relocate our family to another state and take Bella away from all that has become familiar to her. I don't know why we were told that a facility with fewer specialists, fewer therapists and higher infection rates is in her "best interest." I think Vanderbilt would be selling themselves very short to say that they do not have the resources available to handle her care. I do know they have done it in the past. I don't know why it is met with such resistance...However I do know that I will do everything in my power to give her the best possible outcome, to enjoy being her Mother in the process of doing it, to give her a quality of life while in the hospital for however long that should be.
I want to be clear that this idea is something that has only been pitched. I am not directly tied to any of the process of getting it done so no idea of where it actually stands. I am simply stating the need for it from a parental view point and encouraging the community to reach out with us to try to get this done.
Thank you all again for your support, for your compassion and for your prayers.
Much love to you all
Telisha
Wednesday, January 19, 2011
The journey continues....
Some of you folks reading this saw my post on Facebook yesterday as to our current situation at Vanderbilt. For those of you that did not I will start over but this time a bit more informed and not quite as mad and frustrated.
I will start at the beginning so this could take a while...For the past 2 weeks we had a Dr on that runs the follow up clinic at Vanderbilt where all of the NICU and preemie patients come after discharge. I will preface this by saying we have tried to learn to appreciate the good qualities in each Dr (we get a new one every 2 weeks). For this particular person she got Bella's gtube & nissen surgery in motion when it had been put on hold for an indefinite amount of time. For that we will always be grateful. However also she started pushing for hearing tests, eye tests, MRI's and various evaluations. These are all things we would appreciate however we have learned in our NICU experience you have to stay focused on the task at hand as well and at that time it was way more important to have Bella optimized for surgery than to know if she can see or hear. We expressed concerns for several, several days about the amount of fluid that Bella was retaining. At first we were told that she didn't look any bigger, after being weighed and they realized she had gained 700 grams in 4 days we were told that we needed to move her around more. After moving her around and she only continued to get bigger they intervened with some diuretics just the day before she went off to surgery... Now after surgery she has gained 1200 grams of pure fluid and is miserable. Also during this time they tried to tell us from their 5-15 minute evaluations that she is deaf, blind and possibly could never walk...(we know for a fact that she is not deaf or blind but it takes more than 15 minutes to realize that). Some have gone as far as to make the assumption that she will be a "vegetable". You have all seen the photos, some of you have met her and it is SO far from the truth that it really makes us question how these assumptions are made and it is very scary that her care could be centered around these thoughts.
Also during these 2 weeks she informed us of something we have never ever heard before in our journey. - "Scope of Care"- this means that they feel their expertise only extends to 1 year. After that time they would like for Bella to either go home or to a chronic care facility in another state. She informed us that in her expertise that Bella will not be ready to go home in May and she recommended a chronic care facility in Louisville or Atlanta. First of all our problem with this is that we think it is way too soon to determine whether Bella will be ready to come home in May. She just had 3 surgeries in 5 weeks....She did far better than anyone ever gave her credit and she has remained amazingly stable thru the process. So we hope that this is a mute point and we are ready for discharge around her first birthday. However we also know that things happen and she may not be ready to go and if we try to force it she could come home and die after fighting this long and hard to stay alive. Or we could sale our home in this economy (lose money), give up our business (which has taken 10 years to build), pull our child out of his school (the only stability we can provide him right now), give up our church that took us years to find and move away from the very family and friends that have helped us get thru this past year to take her to a "chronic care facility" that is equipped with fewer therapists, fewer specialists and are known for their high infection rates. A glorified baby nursing home if you will. OR we could stay at Vanderbilt with our team of nurses that have MUCH experience taking care of babies like Bella, a staff of doctors that are made up of leading experts in chronic lung disease, pulmonary hypertension and various areas that greatly benefit Bella's condition and keep our life on track and moving forward so that we may provide for her and have the support that we need to be there for her every day.
So my fury (absolutely furious!!!) lies in the fact that this Dr and probably some upcoming ones have and will try to convince us that the chronic care facility is in "Bella's best interest". Really do I look that dumb????
We are blessed this next 2 weeks with a Dr that sees the big picture for Bella. She understands that it is baby steps and that we cannot rush her or push her too hard. She is also not pushing the "chronic care facility" idea on us either. We freaked out thinking that her care was headed in the direction to "push us out the door" and we addressed it with this Dr and she assures us not on her watch. So for the next 2 weeks we are safe and free of this nonsense (we hope...) However we want all of you to be informed as this is where the road may take us and at some point we may have to fight to keep Bella there. We never ever in a million years would think we would have to fight to keep her in the hospital I tell you that...But we WILL NOT bring her home before she is ready just to lose her and we WILL NOT put her in one of these horrible places they tell us about.
What can we do to ensure Bella and babies on the same course as her get the care that they need for as long as they need at one of the most acknowledged children's hospital in the South? We turn one of the NICU wings into a chronic care wing for babies with extended care needs. We form a team of nurses and doctors whose calling is caring for these chronic babies to manage their care. It is very simple, they have every thing they need to get it done. And they have seen in the past few years a definite need for it. So if any of you out there have any contacts or know the powers that be this is what you can do to help us and all of those who follow in our footsteps. Tell them that Nashville wants/needs this to happen. Not 5 years from now but NOW! We need a chronic care wing that is overseen by a specialized team of doctors and nurses to give our babies every chance possible for the best outcome. If you know anyone making donations to Vanderbilt Children's Hospital please ask that they express their interest for this to happen.
Bella had a rough start to her week with all of the fluid but she is starting to get rid of some of it slowly. It could take 2-4 weeks to get her to her normal size again. I cannot even begin to express my frustration about this and if it had been taken care of 2 weeks ago when we expressed concern....BUT we are moving forward and blessed by an all powerful God that has His hand on her!
Thank you all SO much for each and every prayer, you are carrying us!!!
Much love to you all
Telisha
I will start at the beginning so this could take a while...For the past 2 weeks we had a Dr on that runs the follow up clinic at Vanderbilt where all of the NICU and preemie patients come after discharge. I will preface this by saying we have tried to learn to appreciate the good qualities in each Dr (we get a new one every 2 weeks). For this particular person she got Bella's gtube & nissen surgery in motion when it had been put on hold for an indefinite amount of time. For that we will always be grateful. However also she started pushing for hearing tests, eye tests, MRI's and various evaluations. These are all things we would appreciate however we have learned in our NICU experience you have to stay focused on the task at hand as well and at that time it was way more important to have Bella optimized for surgery than to know if she can see or hear. We expressed concerns for several, several days about the amount of fluid that Bella was retaining. At first we were told that she didn't look any bigger, after being weighed and they realized she had gained 700 grams in 4 days we were told that we needed to move her around more. After moving her around and she only continued to get bigger they intervened with some diuretics just the day before she went off to surgery... Now after surgery she has gained 1200 grams of pure fluid and is miserable. Also during this time they tried to tell us from their 5-15 minute evaluations that she is deaf, blind and possibly could never walk...(we know for a fact that she is not deaf or blind but it takes more than 15 minutes to realize that). Some have gone as far as to make the assumption that she will be a "vegetable". You have all seen the photos, some of you have met her and it is SO far from the truth that it really makes us question how these assumptions are made and it is very scary that her care could be centered around these thoughts.
Also during these 2 weeks she informed us of something we have never ever heard before in our journey. - "Scope of Care"- this means that they feel their expertise only extends to 1 year. After that time they would like for Bella to either go home or to a chronic care facility in another state. She informed us that in her expertise that Bella will not be ready to go home in May and she recommended a chronic care facility in Louisville or Atlanta. First of all our problem with this is that we think it is way too soon to determine whether Bella will be ready to come home in May. She just had 3 surgeries in 5 weeks....She did far better than anyone ever gave her credit and she has remained amazingly stable thru the process. So we hope that this is a mute point and we are ready for discharge around her first birthday. However we also know that things happen and she may not be ready to go and if we try to force it she could come home and die after fighting this long and hard to stay alive. Or we could sale our home in this economy (lose money), give up our business (which has taken 10 years to build), pull our child out of his school (the only stability we can provide him right now), give up our church that took us years to find and move away from the very family and friends that have helped us get thru this past year to take her to a "chronic care facility" that is equipped with fewer therapists, fewer specialists and are known for their high infection rates. A glorified baby nursing home if you will. OR we could stay at Vanderbilt with our team of nurses that have MUCH experience taking care of babies like Bella, a staff of doctors that are made up of leading experts in chronic lung disease, pulmonary hypertension and various areas that greatly benefit Bella's condition and keep our life on track and moving forward so that we may provide for her and have the support that we need to be there for her every day.
So my fury (absolutely furious!!!) lies in the fact that this Dr and probably some upcoming ones have and will try to convince us that the chronic care facility is in "Bella's best interest". Really do I look that dumb????
We are blessed this next 2 weeks with a Dr that sees the big picture for Bella. She understands that it is baby steps and that we cannot rush her or push her too hard. She is also not pushing the "chronic care facility" idea on us either. We freaked out thinking that her care was headed in the direction to "push us out the door" and we addressed it with this Dr and she assures us not on her watch. So for the next 2 weeks we are safe and free of this nonsense (we hope...) However we want all of you to be informed as this is where the road may take us and at some point we may have to fight to keep Bella there. We never ever in a million years would think we would have to fight to keep her in the hospital I tell you that...But we WILL NOT bring her home before she is ready just to lose her and we WILL NOT put her in one of these horrible places they tell us about.
What can we do to ensure Bella and babies on the same course as her get the care that they need for as long as they need at one of the most acknowledged children's hospital in the South? We turn one of the NICU wings into a chronic care wing for babies with extended care needs. We form a team of nurses and doctors whose calling is caring for these chronic babies to manage their care. It is very simple, they have every thing they need to get it done. And they have seen in the past few years a definite need for it. So if any of you out there have any contacts or know the powers that be this is what you can do to help us and all of those who follow in our footsteps. Tell them that Nashville wants/needs this to happen. Not 5 years from now but NOW! We need a chronic care wing that is overseen by a specialized team of doctors and nurses to give our babies every chance possible for the best outcome. If you know anyone making donations to Vanderbilt Children's Hospital please ask that they express their interest for this to happen.
Bella had a rough start to her week with all of the fluid but she is starting to get rid of some of it slowly. It could take 2-4 weeks to get her to her normal size again. I cannot even begin to express my frustration about this and if it had been taken care of 2 weeks ago when we expressed concern....BUT we are moving forward and blessed by an all powerful God that has His hand on her!
Thank you all SO much for each and every prayer, you are carrying us!!!
Much love to you all
Telisha
Friday, January 14, 2011
Day 243
Well folks we couldn't be happier thus far with Bella's recovery from this surgery...She has remained incredibly stable to date. We were hoping that we would be able to turn off her paralyzation medicine today however the surgeon has requested her to be fully sedated and stationary for one more day. Hopefully tomorrow we can see her eyes! I sure do miss them...
I wanted to take the time to update everyone as to where we are now in our journey and what else we need to obtain as far as we know to go home. We have had all of the surgeries that we need to be able to manage her care at home! That in itself feels like a huge accomplishment and blessing!
The next goal will be to wean her off all of her nitric oxide for the pulmonary hypertension. This process is slow going and could take a minimum of 4-6 weeks to get her off. The plan now is to start at the end of next week. Also we will begin in the next few days to wean her off of the morphine drip. This took us 2 weeks last time, we are praying for a quicker process this time. She will remain on her usual doses of methadone and adivan for now but will need to eventually wean her off of both of these before she can come home. These are used for pain & stress management, she has been on both for such a long time it could take months to get her off.
We will also need to start pushing her to come down on her vent settings to switch to home vent settings. We have quite a bit of work to do here as she is on a rate of 50 and needs to be on 25. We are hopeful that we will see some improvements in her lungs after the nissen surgery. If she has been chronically aspirating (which I really think she has) then she should show some improvements post op and the vent settings should start to come down. There is no idea of a timeline on this one, we should know more as she recovers from the surgery and we see what direction she goes. We imagine it could take several more months.
We have much to keep us busy here in the NICU once Bella is recovered and awake. We will be aggressively working with her on daily activities, exercises and therapy to assist with developmental issues. We will continue to try to balance out more positive touch from us and visitors versus negative touch from medical care. We are pretty far behind developmentally but I feel that is to be expected from a baby that has had to spend most of her life with a tube down her throat and for the most part immobile. We will be doing an MRI in the next month or so to look at brain function. As her Mother I am not going to listen to what she may or may not be able to do from the medical professionals, there are too many stories of children that will never see, never talk, never walk, never sit up and many end up doing those things but in their own time...We will find out for ourselves in time what her limitations may be and we will accept them as they come.
We are preparing ourselves for the last leg of this race (we hope!) which will be much like the beginning of the journey with MUCH needed time here at the hospital and little time for life outside of it. However we approach this time giving thanks every step of the way that we are all still here and we may have the chance soon to have our entire family under one roof. We just know that God will bless us with the knowledge, energy and resources to get us to where we need to be.
We will keep you updated as our sleeping beauty arises!
Much love to all
Telisha
I wanted to take the time to update everyone as to where we are now in our journey and what else we need to obtain as far as we know to go home. We have had all of the surgeries that we need to be able to manage her care at home! That in itself feels like a huge accomplishment and blessing!
The next goal will be to wean her off all of her nitric oxide for the pulmonary hypertension. This process is slow going and could take a minimum of 4-6 weeks to get her off. The plan now is to start at the end of next week. Also we will begin in the next few days to wean her off of the morphine drip. This took us 2 weeks last time, we are praying for a quicker process this time. She will remain on her usual doses of methadone and adivan for now but will need to eventually wean her off of both of these before she can come home. These are used for pain & stress management, she has been on both for such a long time it could take months to get her off.
We will also need to start pushing her to come down on her vent settings to switch to home vent settings. We have quite a bit of work to do here as she is on a rate of 50 and needs to be on 25. We are hopeful that we will see some improvements in her lungs after the nissen surgery. If she has been chronically aspirating (which I really think she has) then she should show some improvements post op and the vent settings should start to come down. There is no idea of a timeline on this one, we should know more as she recovers from the surgery and we see what direction she goes. We imagine it could take several more months.
We have much to keep us busy here in the NICU once Bella is recovered and awake. We will be aggressively working with her on daily activities, exercises and therapy to assist with developmental issues. We will continue to try to balance out more positive touch from us and visitors versus negative touch from medical care. We are pretty far behind developmentally but I feel that is to be expected from a baby that has had to spend most of her life with a tube down her throat and for the most part immobile. We will be doing an MRI in the next month or so to look at brain function. As her Mother I am not going to listen to what she may or may not be able to do from the medical professionals, there are too many stories of children that will never see, never talk, never walk, never sit up and many end up doing those things but in their own time...We will find out for ourselves in time what her limitations may be and we will accept them as they come.
We are preparing ourselves for the last leg of this race (we hope!) which will be much like the beginning of the journey with MUCH needed time here at the hospital and little time for life outside of it. However we approach this time giving thanks every step of the way that we are all still here and we may have the chance soon to have our entire family under one roof. We just know that God will bless us with the knowledge, energy and resources to get us to where we need to be.
We will keep you updated as our sleeping beauty arises!
Much love to all
Telisha
Wednesday, January 12, 2011
Post Op Update
Sorry for the delay but for some reason the site wouldn't let me update. We have been blessed again with another successful surgery & beautiful recovery thus far. The surgeon said that she handled it amazingly with no issues from her end. We were very fortunate to have such a skilled surgeon as the procedure was tricky with her anatomy.
This morning she is on 42% oxygen, which is less than before she went in. She is on a morphine drip for pain and they want her sedated for several days to ensure good healing of incisions. It is amazing to see her free from all tubes & tape on her face.
We can't thank you enough for every single prayer & all of the support. We will keep you posted as to progress the remainder of the week. God is so good to us!
Much love to all
Telisha
This morning she is on 42% oxygen, which is less than before she went in. She is on a morphine drip for pain and they want her sedated for several days to ensure good healing of incisions. It is amazing to see her free from all tubes & tape on her face.
We can't thank you enough for every single prayer & all of the support. We will keep you posted as to progress the remainder of the week. God is so good to us!
Much love to all
Telisha
Tuesday, January 11, 2011
Miss Bella went back to the OR about 20 minutes ago! We are awaiting confirmation that she has settled in for surgery. We got off to a rocky start (not Bellas fault)....but some simple mistakes from others. Our nerves are a little frayed because of it but we are trusting in the Lord to see her thru safely. We have much faith in the surgeon too. We got some good snuggle time before to carry us thru. We will keep you posted as we know more. Thank you for the prayers!
Friday, January 7, 2011
Surgery Update #3
Well we have no plans for surgery today so far unless the surgeon changes his mind again. He has now told us that he would like some additional testing done with her today before they operate possibly on Monday. Yesterday we were told that the additional testing is not necessary....anyways we are feeling the frustration of the constant changes with these plans however we are grateful that noone is approaching this lightly and taking all things into consideration to make sure that it is the best option for Bella and the right timing. We have become aware of the many players on her care team and how they all have to work together to ensure the best possible outcome. Yesterday there was a meeting of specialists including heart, lung, neo-natalogists, general surgeons and nurses to discuss. We are appreciative of having so many brilliant minds working together to benefit her and are realizing with that comes difference of opinions on specifics. SO hopefully we knock this test out today (which will show that we need to get both surgeries) and we go on Monday.
The surgery for both the gtube and nissen will be the longest surgery we have endured yet, taking up to 3-4 hours to complete. I pray for peace and comfort during this time as in the past the hour long surgeries seem like a lifetime. As I mentioned recovery for this could be painful depending on if they can do the nissen lapriscopically or if they will have to make actual incisions.
The past several weeks have been busy in Bella's world as we have weaned her off all of the pain drips from the last surgery, the steroids for her lungs and started the nitric wean. She has been off of meds & steroids for about 3 weeks now and is doing well with all things considered. We have seen need for increased pressure support from the ventilator but her oxygen requirements have not gone up which is much progress from previous weans. The nitric wean will take several months as they are only weaning by 1 ppm every 5-7 days. We are on 10 now and she is tolerating fantastically. In addition to the weans we are working on introducing Bella to the world around her. She is learning that she can turn her head without being stopped for fear of extabation. She is learning that she can sit in the upright position and tolerate it. She is learning that not everyone that comes near her will induce pain or make her uncomfortable. We are learning to work with the many cords still attached to her and still be self sufficient with holding her and caring for her. We are learning to do trach changes. Which is one of the scariest and most important things I have ever learned in my life. I have never had the responsibility of my child's airway at my finger tips twice a week. We are learning to suction her and do daily care for her trach. We are learning various exercises that we can do to help her along with her development. We are learning that we need a crash course in nursing school and medical school to feel confident in taking care of her. We are learning to ask lots of questions and pay VERY close attention.
We feel like we have rounded a corner in our journey here. We still cannot fully see the light at the end of the tunnel but we know it is there. We have started informal discussions of what we need to do to get her home. Only God knows when that may be but at least the professionals are recognizing that as a possibility for the first time. The follow up clinic with which we will be working to assist with her developmentally and the many health needs she will have started regular visits. There is great concern on their side about neurological issues. In their brief assessments of her they have found that muscle tone is not normal, she has spasms in her legs and arms which is a sign of neurological disorders they say and her head growth is not as constant and increased as it should be. So now we have gone from the discussions of IF Bella will ever come home to when she comes home if she will be able to walk, talk,see, hear and how severe will her special needs be. From speaking with other preemie mom's these are typical concerns and until further testing or she gets older we just can't be sure. As always we are prepared and accepting of the worst but praying for the best.
Her stability over the course of the past few weeks is progress for Bella, we see it as huge progress. There have been no great leaps and bounds forward but that will be a constant theme with her over the next few years, it will be slow but hopefully steady.
We cannot express the gratitude to so many, especially the Lord, for where we are today. Our entire world has changed but we are here still hopeful and loving each other more than we ever have. Every kiss of her cheek and snuggle in my arms carrying me thru another day. Looking back over the past 7 months I can honestly say now that it is all worth it for us and we will strive and do our best to make it worth it for her. I want to live each day to make her better because she has fought so hard to be here. I want to give her every opportunity to enjoy this amazing life that we live. I want to teach her and have her learn from me hopefully as much as I have learned from her...The Lord continues to empower us giving us confidence in the fact that He chose us for a reason and He will provide us with the strength and ability along the way. There is no greater comfort than just knowing that.
Thank you all again for being our supporters, our prayer warriors and friends. You have given us a knowledge of the beauty of the human spirit and that my friends will last a lifetime.
Much love to you all
Telisha
The surgery for both the gtube and nissen will be the longest surgery we have endured yet, taking up to 3-4 hours to complete. I pray for peace and comfort during this time as in the past the hour long surgeries seem like a lifetime. As I mentioned recovery for this could be painful depending on if they can do the nissen lapriscopically or if they will have to make actual incisions.
The past several weeks have been busy in Bella's world as we have weaned her off all of the pain drips from the last surgery, the steroids for her lungs and started the nitric wean. She has been off of meds & steroids for about 3 weeks now and is doing well with all things considered. We have seen need for increased pressure support from the ventilator but her oxygen requirements have not gone up which is much progress from previous weans. The nitric wean will take several months as they are only weaning by 1 ppm every 5-7 days. We are on 10 now and she is tolerating fantastically. In addition to the weans we are working on introducing Bella to the world around her. She is learning that she can turn her head without being stopped for fear of extabation. She is learning that she can sit in the upright position and tolerate it. She is learning that not everyone that comes near her will induce pain or make her uncomfortable. We are learning to work with the many cords still attached to her and still be self sufficient with holding her and caring for her. We are learning to do trach changes. Which is one of the scariest and most important things I have ever learned in my life. I have never had the responsibility of my child's airway at my finger tips twice a week. We are learning to suction her and do daily care for her trach. We are learning various exercises that we can do to help her along with her development. We are learning that we need a crash course in nursing school and medical school to feel confident in taking care of her. We are learning to ask lots of questions and pay VERY close attention.
We feel like we have rounded a corner in our journey here. We still cannot fully see the light at the end of the tunnel but we know it is there. We have started informal discussions of what we need to do to get her home. Only God knows when that may be but at least the professionals are recognizing that as a possibility for the first time. The follow up clinic with which we will be working to assist with her developmentally and the many health needs she will have started regular visits. There is great concern on their side about neurological issues. In their brief assessments of her they have found that muscle tone is not normal, she has spasms in her legs and arms which is a sign of neurological disorders they say and her head growth is not as constant and increased as it should be. So now we have gone from the discussions of IF Bella will ever come home to when she comes home if she will be able to walk, talk,see, hear and how severe will her special needs be. From speaking with other preemie mom's these are typical concerns and until further testing or she gets older we just can't be sure. As always we are prepared and accepting of the worst but praying for the best.
Her stability over the course of the past few weeks is progress for Bella, we see it as huge progress. There have been no great leaps and bounds forward but that will be a constant theme with her over the next few years, it will be slow but hopefully steady.
We cannot express the gratitude to so many, especially the Lord, for where we are today. Our entire world has changed but we are here still hopeful and loving each other more than we ever have. Every kiss of her cheek and snuggle in my arms carrying me thru another day. Looking back over the past 7 months I can honestly say now that it is all worth it for us and we will strive and do our best to make it worth it for her. I want to live each day to make her better because she has fought so hard to be here. I want to give her every opportunity to enjoy this amazing life that we live. I want to teach her and have her learn from me hopefully as much as I have learned from her...The Lord continues to empower us giving us confidence in the fact that He chose us for a reason and He will provide us with the strength and ability along the way. There is no greater comfort than just knowing that.
Thank you all again for being our supporters, our prayer warriors and friends. You have given us a knowledge of the beauty of the human spirit and that my friends will last a lifetime.
Much love to you all
Telisha
Thursday, January 6, 2011
Update #2
Well I spoke too soon on having the surgery confirmed...the day was spent in preparation however they just informed me that surgery confirmed for Monday at 7:30 am. We have no explanation as to why so there is a small chance that it was a mistake and she could go. We are just on stand by for now. Just keep reminding myself that Gods timing is perfect and praying that she stays well over the weekend. We were ble.ssed today with a successful picc line w ewhich is a big deal for Bella as we have had issues in the past with these. She is on 48-50% 02 w sats in high 90s. We are very pleased with her continued stability!
Will keep you all posted as we know more....
Much love to all
Telisha
Will keep you all posted as we know more....
Much love to all
Telisha
Update!
Well folks we will start with Happy New Year to you all. We hope everyone had a healthy and happy holiday season! We were blessed with one as well. I owe everyone a lengthy update however time is minimal right now and just wanted to let everyone know that we are going to surgery tomorrow for the gtube & nissen. We are waiting on confirmation for time now. This is another HUGE step in the right direction, we are excited yet again to get it out of the way. And prayerful that surgery and recovery will be a success. We are told the nissen procedure will be more painful during the recovery period for Bella because they may have to make incisions in the abdomen so we are asking our heavenly Father to comfort her during this time. Right now this is the last surgery that we can forsee her needing at this time...Woohoo! We will keep everyone posted on time tomorrow and of course an update post op. As always thank you for the prayers!
Much love to you all
Telisha
Much love to you all
Telisha
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