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
Sunday, January 30, 2011
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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