It's very difficult to maintain one's focus and stay in the moment. Even more difficult when you aren't getting enough sleep or self-care. Thanks to family and friends for the reminder and encouragement to step away. Any new parent would feel anxiety about leaving a little one for the first time even without special needs. Hopefilly we will soon have much more of a rhythm in place and have a few more sets of hands available to take over for even a half an hour at a time. No one can be "on call" 24 hours a day with this kind of care and not get time away to recoup.
So, we do what we can in order to look to each day as a new day (Sounds almost oxymoronic). Today, at least for me, felt like that new day because my lovely, caring, nurturing wife took care of Delaney all night, solo, and allowed me to sleep. I still stirred in the night when I heard rustling and the occasional whirring of the vacuum we use to keep her airway clear. Nevertheless it was more sleep than I've gotten in many days time. I really needed it, and so thankful I was able to get it.
What I'm really glad for is that I was rested enough to be the good listener and caretaker I expect of myself especially when Lindsay needs me. She had some difficult moments today and I felt strong enough to be there for her. We always lean on each other and I don't want that to ever change - so we do what we need to to keep that strength in our relationship going.
We shared a lot together today about our fears. We explored some of the "what ifs" that race through our mind. We try hard not to dwell on them but it's important that we talk about it and express them. It's just not healthy to keep all of that bottled up inside. So, I thought I would share where that discussion led us.
I did some informal research this afternoon and in the process reeducated myself on brain biology, neurology, and some modern medicine. This was all triggered by my memory of when the doctors reported to us that Delaney's MRI showed "global trauma". We were obviously devastated, but it's difficult to understand what that means exactly. Global? Everything?
So I set out on google to get a better handle on what that might mean. I won't go into the parts of the brain here, but there are some clear connections to "what's missing" and what parts of Delaney's brain are affected. Each behavior that we worry about has a coresponding structure. We worry about her ability to suck, swallow, cough, sneeze, etc. and will those abilities return? If so, how? Can those parts of the brain be "rewired"? As it turns out, this is quite possible.
So in looking at possible ways to regain these lost behaviors, we came across a kind of physical therapy called Feldenkrais. We watched a video which illustrates how a young woman who, as a baby at 6 months of age, was given a similar diagnosis and overcame all of the obstacles, that similarly we are currently facing. Interestingly, at the time of the video she was attending college. Watch here: http://www.youtube.com/watch?v=CNVw4ZISLMs&feature=youtube_gdata_player . We are certainly going to be looking into this therapy for Delaney. Especially since we are already seeing her move a little more each day.
Today for about two hours she was waving her little arms around, eyes wide open. She is vocalizing more as well. One thing that we are grateful for is that her disposition seems to be intact. She still has the cutest little chortle. At one point I swear she was going to crack a smile! So we keep praying and holding, and loving this sweet baby.
As an aside, one of my "what if's" relates to the tragic CPR incident, in which Delaney was down for just over 20 minutes. I was reading today about "Cool Cap" for hypoxic-ischemic encephalopathy (HIE). If administered within 6 hours of an event such as this, has the possibility of staving off the lasting effects and preventing brain injury. Might this have been possible during this massive crisis? I made myself crazy thinking about it today. Then later brought myself back at peace knowing that there were just too many variables that night for anyone to have gotten every possible angle. I will say that I do think that NICUs across the country should be creating a protocol for the use of this device, and make it standard. I understand that some babies who require stimulation to restart their heart may only need seconds or a couple of minutes. However, those who go beyond 6-10 minutes should really be strongly considered for cooling therapy. I would like to see this happen so other children may be given the possibility of being saved from severe brain trauma. Make the option available to parents, educate them.
Tonight, I was really glad that my Dad was able to hold her for the first time. We feel horrible that it's taken him so long to experience his Grandaughter in that way. He was sick the first couple of weeks that she was born and then sadly things got so disrupted. It was comforted to see him cradle her in his arms - more of that warmth that I want her to experience. She deserves every wonderful thing in this world, and while I have any influence that's going to happen, early and often. It's good for the both of them!
I will leave you with this thought. You know that we get exasperated and angry at time. I shared a little of that in yesterday's post when I expressed how we "...ask God so fervently to make it right, fix our little girl...she doesn't deserve this!" Well, after a beautifully written note from one of Lindsay's friends, we got this message loud and clear...God isn't through with her (or us) yet. It's late, and I have more to say but will be adding that another day!
Goodnight, Moon!
Love, B & L & d
Saturday, April 30, 2011
Delaney Update: 4/29
It was a mixed day today. Delaney was fairly quiet and slept most of the day (She sleeps most of the time anyway). However, a few good friends stopped by. With their help and the help of family we got a little respite.
My Dad stopped by complete with a massage table and gave me some relief of all the tension that has been concentrating in my back and neck. It's hard when the weight of our little one's world is resting firmly on our shoulders.
My Mom also came with a dear friend, Rosemary, and shared stories of a beautiful girl who has overcome many similar challenges of her own. We hope and pray and wish that the tenacity and strength of our little spitfire will pay off and she will get back to her family in the way we were growing so accustomed.
We got further respite from the uplifting nature of two other close friends who came by to shoot the breeze, play with Delaney, and continue to warm this house we love so much. George and Roy didn't disappoint. Their good nature, cheery smiles, and good ears came in handy. I have always loved Roy's easy laugh which is so contagious. He has a smile and way about him that just makes you feel good. George, who is a gentle giant cut from the same cloth as me was nothing short of brilliant with Delaney. He played with her for the entire time he was here. Rubbing her back and giving her arms and legs a good "workout". It was neat to see how she responded to gentle nudging and tugging at her little hands and feet. Our friends, angels - both of them.
Cece, who has become another one of our earth angels brought by some nourishing fruit, juices, and one of our favorite snacks...hummus and pita bread (now I know we will be inundated with buckets of hummus to be sure). We were not only touched by her generosity, but she sat with us and shared in the worry and tragedy of all of this. Like others who want to be "strong" and be the shoulder for us to cry on, she expressed her feelings too. Not to be confused with weakness, as there is such beauty and strength in that act.
Our situation is incredibly difficult, totally unfair, and the outcome is uncertain at any given moment. We pray so hard, and ask God so fervently to make it right, fix our little girl...she doesn't deserve this!
We feel "heavy" today. We had such a challenging night last night which lead to an exhausting day. It seems that the pace of keeping up with Delaney's care regimen is catching up with us. It makes it really hard to stay optimistic when the repetitive call to action looms; with feedings, medicine, and general checking in occupies your mind. We have to remind ourselves of the little gains, and hold on to those moments for we do not know how long this healing process will take. We have to shrug off the bleakness which leaks into our minds.
It's really tough when you think about the kinds of activity a baby should be engaging in at this stage of development, knowing that she was just getting in the swing of growing, learning, and changing when she got hit with a ton of bricks. I wish that we had some guidelines for this. Something to turn to that would be able to shed some light on what we can expect from her this week and next. Sadly, it's just not how brain injury works. Not even the worlds leading neurologist would be able to predict what will happen with her. I appreciate that WE know so little about the human brain, but we know even less about what Delaney's brain may be doing to heal and overcome. Either way she needs time, and we need time and patience.
The hospice nurse, Scott, visited today. He's a good man. Gentle in his way with us, always careful not to offend our faith and respectful of our space. He, like so many others we have worked with of late, is in the right field. It takes a certain type of person to deal with the uncertainty of helping an ailing family member. It was nice to hear today how he holds himself neutral. He commented how he has been surprised by patients in the past. He accepts our optimism about Delaney, yet he also listens to our fears.
So this evening, and for the rest of this week we really hope that you will be able to share on our prayers for strength, and rest. We have a lot of work cut out for is and we need to be able to walk away from all of this craziness at least once a day.
We love you all so much, we can't do this without you.
Love,
B & L & d
My Dad stopped by complete with a massage table and gave me some relief of all the tension that has been concentrating in my back and neck. It's hard when the weight of our little one's world is resting firmly on our shoulders.
My Mom also came with a dear friend, Rosemary, and shared stories of a beautiful girl who has overcome many similar challenges of her own. We hope and pray and wish that the tenacity and strength of our little spitfire will pay off and she will get back to her family in the way we were growing so accustomed.
We got further respite from the uplifting nature of two other close friends who came by to shoot the breeze, play with Delaney, and continue to warm this house we love so much. George and Roy didn't disappoint. Their good nature, cheery smiles, and good ears came in handy. I have always loved Roy's easy laugh which is so contagious. He has a smile and way about him that just makes you feel good. George, who is a gentle giant cut from the same cloth as me was nothing short of brilliant with Delaney. He played with her for the entire time he was here. Rubbing her back and giving her arms and legs a good "workout". It was neat to see how she responded to gentle nudging and tugging at her little hands and feet. Our friends, angels - both of them.
Cece, who has become another one of our earth angels brought by some nourishing fruit, juices, and one of our favorite snacks...hummus and pita bread (now I know we will be inundated with buckets of hummus to be sure). We were not only touched by her generosity, but she sat with us and shared in the worry and tragedy of all of this. Like others who want to be "strong" and be the shoulder for us to cry on, she expressed her feelings too. Not to be confused with weakness, as there is such beauty and strength in that act.
Our situation is incredibly difficult, totally unfair, and the outcome is uncertain at any given moment. We pray so hard, and ask God so fervently to make it right, fix our little girl...she doesn't deserve this!
We feel "heavy" today. We had such a challenging night last night which lead to an exhausting day. It seems that the pace of keeping up with Delaney's care regimen is catching up with us. It makes it really hard to stay optimistic when the repetitive call to action looms; with feedings, medicine, and general checking in occupies your mind. We have to remind ourselves of the little gains, and hold on to those moments for we do not know how long this healing process will take. We have to shrug off the bleakness which leaks into our minds.
It's really tough when you think about the kinds of activity a baby should be engaging in at this stage of development, knowing that she was just getting in the swing of growing, learning, and changing when she got hit with a ton of bricks. I wish that we had some guidelines for this. Something to turn to that would be able to shed some light on what we can expect from her this week and next. Sadly, it's just not how brain injury works. Not even the worlds leading neurologist would be able to predict what will happen with her. I appreciate that WE know so little about the human brain, but we know even less about what Delaney's brain may be doing to heal and overcome. Either way she needs time, and we need time and patience.
The hospice nurse, Scott, visited today. He's a good man. Gentle in his way with us, always careful not to offend our faith and respectful of our space. He, like so many others we have worked with of late, is in the right field. It takes a certain type of person to deal with the uncertainty of helping an ailing family member. It was nice to hear today how he holds himself neutral. He commented how he has been surprised by patients in the past. He accepts our optimism about Delaney, yet he also listens to our fears.
So this evening, and for the rest of this week we really hope that you will be able to share on our prayers for strength, and rest. We have a lot of work cut out for is and we need to be able to walk away from all of this craziness at least once a day.
We love you all so much, we can't do this without you.
Love,
B & L & d
Thursday, April 28, 2011
Home Again, Home Again, Jiggity Jig!
"Home again, Home again, Jiggity Jig!" was something that my Grandpa McDonald would say after many a family outing as we walked through the door. It always put a smile on my face and gave me the greatest feeling of warm love. That is the feeling that I hope to hold on to with my lovely wife Lindsay and our sweet Delaney. I want her to know that feeling, to build connections and memories of what it is to have a HOME.
In their efforts to show support often people have felt somewhat powerless, without a "solution" to the circumstance we find ourselves in. We need prayers, good intention, and positive energy - this is abundantly clear. The food that people have been providing has been wonderful, we are comforted in that we don't have to think about or worry about meals. It's something that is easy to forget when all of your energy is going into supporting the greatest gift we've been blessed with. What we have been thankful for (in some ways we need most) are the visits of family and friends to our home.
Many of you who know me well, and know that I thrive on human contact. At work, I have been known to end a meeting with exasperation and say "before we leave, I need some personal time with you guys!". Usually gets a smile or two, and then we ask about each other's personal life. Likewise when we get visitors to our home, it builds our spirit, helps us feel a sense of community and brings us "home again".
Our whole world has been turned on it's head. We don't know what will happen moment to moment, or day to day. We have lost some of the rhythm of the family system we had started. So when we have quality time with our friends and family it brings us closer to what we had. In doing so, we are demonstrating to Delaney what she can expect as she relearns what it is to be a part of this world. She was barely with us, beginning to experience things to smile about...and tragically had it all stripped away.
Today, we were visited by some wonderful people who are very close to us and as a result our house was buzzing with chatter, laughter, and brightness. All of the things that Delaney deserves. It heals our hearts and minds and puts us in the best position possible to give her a fighting chance. As I have said before, I surround myself with wonderful people and wonderful things happen.
One of our visitors today was a Reiki Master. I have to say I am always open to alternatives, and I am all about what is possible. Before she arrived I hoped and expected a positive impact. We all know that babies need love and affection, warm touch, cuddles and snuggles. So at the very least Delaney would feel comforted by this light non-invasive therapy. What astonished me, and I get chills even reflecting on it, is that her eyes were wide open the entire time! She even made little gentle cooing noises, as if to say "aaahh". The practitioner talked to her and it was as if they were having a conversation. It was wonderful to see, it was the most active she's been since this nightmare started.
I'm not saying that she's all better, or that we are out of the woods yet. It's just that now have one more weapon to wage in this war. We have one more way to make her life more comfortable, maybe take away some of the pain and discomfort - at least for a while. At most we have a way to stimulate all those good healing vibes and see the possibility of a return of our sweet girl we were just getting to know.
I would be remiss if I also didn't mention that my older brother (Uncle Sean) was wonderful yesterday. He sat with me and Delaney for about twenty minutes and shared his own Ki energy with her. She just soaked it up. She was on my chest and abdomen at the time and I could actually feel the energy in my own tummy. It was kind of like getting "butterflies". We Flatters are pretty powerful!
As I write this very update Delaney is feeling the warmth of our embrace, of our home which was graced by some really wonderful people, and the presence of the holy spirit - I'm sure of it!
(You'll be happy to also know that she is breathing deeply, and strong!)
I love my sweet baby girl, my beautiful wife, and this crazy life which has sought fit to throw many curveballs our way. As I tell Lindsay everytime things get tough and we break down...We're gonna get through this!
God Bless,
B & L & d
In their efforts to show support often people have felt somewhat powerless, without a "solution" to the circumstance we find ourselves in. We need prayers, good intention, and positive energy - this is abundantly clear. The food that people have been providing has been wonderful, we are comforted in that we don't have to think about or worry about meals. It's something that is easy to forget when all of your energy is going into supporting the greatest gift we've been blessed with. What we have been thankful for (in some ways we need most) are the visits of family and friends to our home.
Many of you who know me well, and know that I thrive on human contact. At work, I have been known to end a meeting with exasperation and say "before we leave, I need some personal time with you guys!". Usually gets a smile or two, and then we ask about each other's personal life. Likewise when we get visitors to our home, it builds our spirit, helps us feel a sense of community and brings us "home again".
Our whole world has been turned on it's head. We don't know what will happen moment to moment, or day to day. We have lost some of the rhythm of the family system we had started. So when we have quality time with our friends and family it brings us closer to what we had. In doing so, we are demonstrating to Delaney what she can expect as she relearns what it is to be a part of this world. She was barely with us, beginning to experience things to smile about...and tragically had it all stripped away.
Today, we were visited by some wonderful people who are very close to us and as a result our house was buzzing with chatter, laughter, and brightness. All of the things that Delaney deserves. It heals our hearts and minds and puts us in the best position possible to give her a fighting chance. As I have said before, I surround myself with wonderful people and wonderful things happen.
One of our visitors today was a Reiki Master. I have to say I am always open to alternatives, and I am all about what is possible. Before she arrived I hoped and expected a positive impact. We all know that babies need love and affection, warm touch, cuddles and snuggles. So at the very least Delaney would feel comforted by this light non-invasive therapy. What astonished me, and I get chills even reflecting on it, is that her eyes were wide open the entire time! She even made little gentle cooing noises, as if to say "aaahh". The practitioner talked to her and it was as if they were having a conversation. It was wonderful to see, it was the most active she's been since this nightmare started.
I'm not saying that she's all better, or that we are out of the woods yet. It's just that now have one more weapon to wage in this war. We have one more way to make her life more comfortable, maybe take away some of the pain and discomfort - at least for a while. At most we have a way to stimulate all those good healing vibes and see the possibility of a return of our sweet girl we were just getting to know.
I would be remiss if I also didn't mention that my older brother (Uncle Sean) was wonderful yesterday. He sat with me and Delaney for about twenty minutes and shared his own Ki energy with her. She just soaked it up. She was on my chest and abdomen at the time and I could actually feel the energy in my own tummy. It was kind of like getting "butterflies". We Flatters are pretty powerful!
As I write this very update Delaney is feeling the warmth of our embrace, of our home which was graced by some really wonderful people, and the presence of the holy spirit - I'm sure of it!
(You'll be happy to also know that she is breathing deeply, and strong!)
I love my sweet baby girl, my beautiful wife, and this crazy life which has sought fit to throw many curveballs our way. As I tell Lindsay everytime things get tough and we break down...We're gonna get through this!
God Bless,
B & L & d
Wednesday, April 27, 2011
Adjustments at Home
We've now experienced 24 hours of home care with our precious Delaney which has been interesting to say the least. There were moments of shear anxiety, fear, and panic. Intermixed with amazing little gains, and small steps forward.
When anyone brings a newborn home, 1st child or otherwise there is this notable overwhelming feeling of responsibility. This feeling we know all to well and this transition to home care has compounded that feeling ten-fold. We have a whole new set of tasks, some are time dependent, while others are "on-call".
We feed Delaney through a syringe which runs through a naso-gastric tube. This has to be tested from time to time to ensure proper placement - a minor task but important. We have several steps that are required to prep her for feeding, it's relatively simple but so remotely different from what it was like before. We used to hear a distinctive cry and fussiness that alerted us to a feeding, now it's on a schedule. It's somewhat mechanical, but what isn't lost is that closeness. I can never get enough of my sweet baby. Feeding is very strange by comparison but she snuggles in and soaks up the love.
Her breathing is supporting with oxygen. We have a compressor which is kind of an amazing machine that takes all of the room air, filters it and maximizes the O2. She has tubing that runs into her nostrils, called a cannula. She breathes relatively well on her own and as I've indicated before her somewhat shuddered breathing has improved, but she still needs a boost of support.
What is really anxiety provoking is that she cannot cough or clear her own throat. So we have to monitor her breathing and when it sounds "junky", vaccuum out her muccous. It's a scary experience. You can tell she needs relief, but the process of suctioning her airway is very irritating to her. She turns bright red and holds her breath and every millisecond she isn't breathing feels like minutes. Of course we have to get through it, and even have to be a bit "mean" so she can avoid aspirating her fluids. It's such a big responsibility.
The other very important regimen is administering her medications. we have three liquid meds; two for siezures, and one for stomach acid. These are given in the morning and at night. When you are dealing with infants the measurements are small, precise, and very delicate. I am thankful that Lindsay and I are such a team in this because this morning I measured incorrectly because I didn't read the written instructions carefully enough. We thankfully caught the mistake...yet another stressful experience and something that just two short weeks ago we would never have dreamed we would be having to deal with.
We want you to know that while all of this is overwhelming and scary, there isn't anything we wouldn't do for our daughter. It's not what we want, but it's what we have. I am thankful that Delaney is with us, because we are capable, full of nothing but hope and love. We will be tested, tried, and challenged but if there's something that we can do to provide comfort and a chance for healing we will do it.
Despite all of these challenges, she looks so much better than she did even two days ago. She has good skin color, and from time to time seems to have more physical strength. I am so glad that we are able to feed her breast milk although this has been a challenge for Lindsay, feeding the breast pump is not the experience she had grown so accustomed to...I know she misses that special bond and motherly time. I miss it too. Who knows, maybe that will return with time, babies are amazing...Delaney has fought so hard to this point, I know she wants to be with us with all of her heart. She holds on to our fingers so tightly.
Today, we were visited by many people - official, family, and friends. It was so uplifting and warm in this house. Two colleagues who have become dear friends shared with us their tears and concerns. They were apologetic for they intended to be "strong", however it was in their sharing of our space and time that they demonstrated the most strength. The fear that we have as parents of such difficult circumstance is that people will flee; out of fear, or not-knowing (what to do). So many have demonstrated to us quite the opposite, we have been rallied around!
We are reminded daily of how much love there is in this world. Our connections with friends and family far and wide, strangers of all faiths coming together to pray, share positive thoughts, advice, and concern.
While many cannot be here with us physically, and many cannot help us day to day with the difficult tasks at hand, we know that you are all with us in spirit.
We don't know how much time we have with our beautiful little girl, maybe no one ever really knows how long we have with the connections that are important to us...but we do know that each day is a gift.
God bless.
Love,
B & L & d
When anyone brings a newborn home, 1st child or otherwise there is this notable overwhelming feeling of responsibility. This feeling we know all to well and this transition to home care has compounded that feeling ten-fold. We have a whole new set of tasks, some are time dependent, while others are "on-call".
We feed Delaney through a syringe which runs through a naso-gastric tube. This has to be tested from time to time to ensure proper placement - a minor task but important. We have several steps that are required to prep her for feeding, it's relatively simple but so remotely different from what it was like before. We used to hear a distinctive cry and fussiness that alerted us to a feeding, now it's on a schedule. It's somewhat mechanical, but what isn't lost is that closeness. I can never get enough of my sweet baby. Feeding is very strange by comparison but she snuggles in and soaks up the love.
Her breathing is supporting with oxygen. We have a compressor which is kind of an amazing machine that takes all of the room air, filters it and maximizes the O2. She has tubing that runs into her nostrils, called a cannula. She breathes relatively well on her own and as I've indicated before her somewhat shuddered breathing has improved, but she still needs a boost of support.
What is really anxiety provoking is that she cannot cough or clear her own throat. So we have to monitor her breathing and when it sounds "junky", vaccuum out her muccous. It's a scary experience. You can tell she needs relief, but the process of suctioning her airway is very irritating to her. She turns bright red and holds her breath and every millisecond she isn't breathing feels like minutes. Of course we have to get through it, and even have to be a bit "mean" so she can avoid aspirating her fluids. It's such a big responsibility.
The other very important regimen is administering her medications. we have three liquid meds; two for siezures, and one for stomach acid. These are given in the morning and at night. When you are dealing with infants the measurements are small, precise, and very delicate. I am thankful that Lindsay and I are such a team in this because this morning I measured incorrectly because I didn't read the written instructions carefully enough. We thankfully caught the mistake...yet another stressful experience and something that just two short weeks ago we would never have dreamed we would be having to deal with.
We want you to know that while all of this is overwhelming and scary, there isn't anything we wouldn't do for our daughter. It's not what we want, but it's what we have. I am thankful that Delaney is with us, because we are capable, full of nothing but hope and love. We will be tested, tried, and challenged but if there's something that we can do to provide comfort and a chance for healing we will do it.
Despite all of these challenges, she looks so much better than she did even two days ago. She has good skin color, and from time to time seems to have more physical strength. I am so glad that we are able to feed her breast milk although this has been a challenge for Lindsay, feeding the breast pump is not the experience she had grown so accustomed to...I know she misses that special bond and motherly time. I miss it too. Who knows, maybe that will return with time, babies are amazing...Delaney has fought so hard to this point, I know she wants to be with us with all of her heart. She holds on to our fingers so tightly.
Today, we were visited by many people - official, family, and friends. It was so uplifting and warm in this house. Two colleagues who have become dear friends shared with us their tears and concerns. They were apologetic for they intended to be "strong", however it was in their sharing of our space and time that they demonstrated the most strength. The fear that we have as parents of such difficult circumstance is that people will flee; out of fear, or not-knowing (what to do). So many have demonstrated to us quite the opposite, we have been rallied around!
We are reminded daily of how much love there is in this world. Our connections with friends and family far and wide, strangers of all faiths coming together to pray, share positive thoughts, advice, and concern.
While many cannot be here with us physically, and many cannot help us day to day with the difficult tasks at hand, we know that you are all with us in spirit.
We don't know how much time we have with our beautiful little girl, maybe no one ever really knows how long we have with the connections that are important to us...but we do know that each day is a gift.
God bless.
Love,
B & L & d
Tuesday, April 26, 2011
Homecoming
This morning we prepared Delaney for home care. They removed all the remaining IV lines, removed heart rate monitors, temp monitors, and respiratory monitors.
Around 1:30 we were discharged and made our way home. It was very scary to venture out of the loving care of Children's Hospital. Away from so many caring souls who not only diligently watched over Delaney, but took us under their wings. We have made connections with tremendous minds and hearts who are absolutely in the right field.
The primary care physician, and many of the nurses who cared for us were in tears as we left. They wished they could have done more for us, and I know that in their hearts they want our precious angel to recover. They are faithful people, which surprised us. Each one of the specialists sat with us personally, cried, and tried to console us. They took such personal interest in our family. Each success and each failure was met with elation and devastation respectively. The were true human beings who never lost sight of the fact that all of out hopes and dreams were tied to this beautiful baby, who has had such an impact on this world in such a short time. Unfortunately, with what they know in western medicine the prognosis isn't good. In their eyes, she may only survive days, weeks, or months. No one can really say. It's in God's hands, and Delaney's heart - which is strong despite it's defects. She's such a fighter.
All I know is my daughter is resting comfortably on my chest, breathing easy, and I'm loving our healing embrace. She's cooing from time to time, stretches and arches her back. She's even grasping our fingers. Her breathing has been much more easy and rhythmic even better than it was yesterday. The notable shudder in her breathing that seemed to scare even the doctors has all but subsided now that she's home and in my loving arms.
Our home has a different look to it. We have a lot of hospital equipment to get used to. She has an O2 concentrator, an infuser, and a suction device to help clear her secretions from her mouth, nose, and throat. There are some new noises and beeps and buzzes, but it's all here to keep our angel as close as possible. She has a feeding tube which runs in her nostril and down to her tummy. We give her breast milk and meds through a syringe, and while it all seems so alien and strange, we will do anything to give her a second chance.
The one thing that every doctor said, is that "we never know". We have hope. All of this can be very overwhelming at times, but we are coming to terms with this new set of standards. In many ways this is like coming home from the hospital all over again. A "new" baby with different needs. We have to learn a whole new set of skills.
As we settle in to the task at hand, we will be agressively pursuing alternative medicines. We have not lined up treatments concretely but we were actually encouraged by the doctors at CH, to pursue "any and all options". I know that they so badly want for all of this to go away and return our sweet Delaney to the way she was, in what seems to be ages ago, but was only a little over a week's time.
It was more than a little stressful this afternoon, but after a wonderful visit by two close friends who brought food and good cheer, and complete with Lindsay's Dad who will be staying over for the next three days we know we will be able to get comfortable with this difficult job.
We love you all for the continued support. At our core we are strong, and we know that we will get through this. We thrive on your thoughts an prayers and energy.
We love you all,
B & L & d
Around 1:30 we were discharged and made our way home. It was very scary to venture out of the loving care of Children's Hospital. Away from so many caring souls who not only diligently watched over Delaney, but took us under their wings. We have made connections with tremendous minds and hearts who are absolutely in the right field.
The primary care physician, and many of the nurses who cared for us were in tears as we left. They wished they could have done more for us, and I know that in their hearts they want our precious angel to recover. They are faithful people, which surprised us. Each one of the specialists sat with us personally, cried, and tried to console us. They took such personal interest in our family. Each success and each failure was met with elation and devastation respectively. The were true human beings who never lost sight of the fact that all of out hopes and dreams were tied to this beautiful baby, who has had such an impact on this world in such a short time. Unfortunately, with what they know in western medicine the prognosis isn't good. In their eyes, she may only survive days, weeks, or months. No one can really say. It's in God's hands, and Delaney's heart - which is strong despite it's defects. She's such a fighter.
All I know is my daughter is resting comfortably on my chest, breathing easy, and I'm loving our healing embrace. She's cooing from time to time, stretches and arches her back. She's even grasping our fingers. Her breathing has been much more easy and rhythmic even better than it was yesterday. The notable shudder in her breathing that seemed to scare even the doctors has all but subsided now that she's home and in my loving arms.
Our home has a different look to it. We have a lot of hospital equipment to get used to. She has an O2 concentrator, an infuser, and a suction device to help clear her secretions from her mouth, nose, and throat. There are some new noises and beeps and buzzes, but it's all here to keep our angel as close as possible. She has a feeding tube which runs in her nostril and down to her tummy. We give her breast milk and meds through a syringe, and while it all seems so alien and strange, we will do anything to give her a second chance.
The one thing that every doctor said, is that "we never know". We have hope. All of this can be very overwhelming at times, but we are coming to terms with this new set of standards. In many ways this is like coming home from the hospital all over again. A "new" baby with different needs. We have to learn a whole new set of skills.
As we settle in to the task at hand, we will be agressively pursuing alternative medicines. We have not lined up treatments concretely but we were actually encouraged by the doctors at CH, to pursue "any and all options". I know that they so badly want for all of this to go away and return our sweet Delaney to the way she was, in what seems to be ages ago, but was only a little over a week's time.
It was more than a little stressful this afternoon, but after a wonderful visit by two close friends who brought food and good cheer, and complete with Lindsay's Dad who will be staying over for the next three days we know we will be able to get comfortable with this difficult job.
We love you all for the continued support. At our core we are strong, and we know that we will get through this. We thrive on your thoughts an prayers and energy.
We love you all,
B & L & d
Monday, April 25, 2011
Decisions
It's been a very long and emotional day. We have had several meetings and a few tests done. What we have discovered today is that the battle will be waged on the home front.
The doctors have determined that there is nothing more that modern medicine can do besides the three medications she will remain on. There are no more tests, or devices that can repair the remaining damage. Her heart and lungs, her kidneys, and her stomach will likely heal on their own.
Sadly, there is no technology that can cure the damage to her brain. Only our love, God's plan, the faith of our friends and family can help her. We are learning all we can to care for her at home. With the help of a hospice care nurse we will be setting up our home to provide her as much medical support as possible.
This will allow us to really give her as much love and attentions as possible. We know that when we feel sick sometimes the only thing that helps us is snuggling, hugs, and kisses. We never run out and at home we can administer them at a moments notice.
We are also looking at an alternative treatment using Ki energy. Ki, much like Chinese "Chi" is known for it's curative qualities. So because so little is known about the brain and curing brain injury we are looking at every possible intervention. We don't yet know if we will be able to have a home visit, or if we will can bring her there. We will of course keep you posted on her status.
Please keep the prayers coming, miracles can an do happen. As I have said before she is our miracle, and in that we know that there may be more in store for her. We truly feel that we will be able to create the most comforting and warm environment for her at home. While they may be calling it hospice care, we by no means are giving up. Too many times we have been told by our wonderful doctors that "we do not know what may happen". Their brain studies with EEG and MRI are a very imprecise science. They are just indicators, generalities, and implications. We see too many instances of "normal" infant behavior and it's time to give the power of love and family a chance to heal her.
You continued love and support means the world to us. We can't do this without you.
Love, B & L & d
The doctors have determined that there is nothing more that modern medicine can do besides the three medications she will remain on. There are no more tests, or devices that can repair the remaining damage. Her heart and lungs, her kidneys, and her stomach will likely heal on their own.
Sadly, there is no technology that can cure the damage to her brain. Only our love, God's plan, the faith of our friends and family can help her. We are learning all we can to care for her at home. With the help of a hospice care nurse we will be setting up our home to provide her as much medical support as possible.
This will allow us to really give her as much love and attentions as possible. We know that when we feel sick sometimes the only thing that helps us is snuggling, hugs, and kisses. We never run out and at home we can administer them at a moments notice.
We are also looking at an alternative treatment using Ki energy. Ki, much like Chinese "Chi" is known for it's curative qualities. So because so little is known about the brain and curing brain injury we are looking at every possible intervention. We don't yet know if we will be able to have a home visit, or if we will can bring her there. We will of course keep you posted on her status.
Please keep the prayers coming, miracles can an do happen. As I have said before she is our miracle, and in that we know that there may be more in store for her. We truly feel that we will be able to create the most comforting and warm environment for her at home. While they may be calling it hospice care, we by no means are giving up. Too many times we have been told by our wonderful doctors that "we do not know what may happen". Their brain studies with EEG and MRI are a very imprecise science. They are just indicators, generalities, and implications. We see too many instances of "normal" infant behavior and it's time to give the power of love and family a chance to heal her.
You continued love and support means the world to us. We can't do this without you.
Love, B & L & d
Sunday, April 24, 2011
Easter
Today, we are at least one step ahead. Delaney's sats continue to be high, and after slowly weaning her off of the ventitlator she is now breathing on her own, with some oxygen support. They took the vent out at approximately 6pm and will only replace the the tube if her sats become compromised or her secretions do not remain clear.
Last night we were able to leave the hospital for a while with my parents, brother Jamie & girlfriend Sarah. It was a welcome distraction but not easy as so often our hearts and minds turn to our sweet baby girl. We are so overwrought with the unfairness of all of this, but despite that fact we remain optimistic. We are taking things really one moment at a time.
When we went to tuck her in last night her breathing was very "junky" with oral secretions and mucous. We were holding her and she seemed to be really uncomfortable and upset. So we thought it best to put her back in bed and let the nurses treat her. We really had a hard night, seeing her in pain and having difficulty breathing clearly brought back those awful memories from a week ago. We are just so thankful that we have eachother, we couldn't do this without such a strong relationship - let alone our faith.
Most recently, this afternoon I was able to hold her for about 2 hours. Her heart rate was calm and her blood pressure was down from where it had been. We know that she responds to us in some way. She just seems to be so much more at peace in my arms. I will continue to hold her and soothe her as much as possible. I can't tell you how good it feels to see her calm an breathing on her own, on my chest...like it was just a week ago. Lindsay is holding her as I write and it's wonderful to see that motherly glow in her face. I imagine her taking an afternoon nap on our couch, we long for those days.
Medically, they have weaned her completely off of dopamine, and adjust her oxygen feed as needed there may be a day soon when she doesn't even need that. They are also looking to reduce one of the siezure medications so that she may be less sedated and possibly engage her senses more. We are hoping that when the meds are reduced we will see more of her "typical baby" behavior return. More importantly we want to see her suck and swallow which will mean that when they allow feeding by mouth we can trust that she won't need assistance. Time will tell.
Today is Easter and is a day of rejuvenation, rejoice, and rebirth. We hope and pray that gods plan is to bring back our Delaney to truly be a part of our family. We want her to truly live, engage with us, and have some sense of autonomy. If this is not His plan we hope thy he will embrace her in His arms and bring her in peace to those who have already passed and that they may be able to look after our sweet Delaney.
We hope this message reaches you in peace and happiness on this Easter Sunday. Please continue to share in our intentions. We thank you for being with us on this most difficult stretch of our journey. You continue to give us strength and optimism.
Love,
B & L & d
Last night we were able to leave the hospital for a while with my parents, brother Jamie & girlfriend Sarah. It was a welcome distraction but not easy as so often our hearts and minds turn to our sweet baby girl. We are so overwrought with the unfairness of all of this, but despite that fact we remain optimistic. We are taking things really one moment at a time.
When we went to tuck her in last night her breathing was very "junky" with oral secretions and mucous. We were holding her and she seemed to be really uncomfortable and upset. So we thought it best to put her back in bed and let the nurses treat her. We really had a hard night, seeing her in pain and having difficulty breathing clearly brought back those awful memories from a week ago. We are just so thankful that we have eachother, we couldn't do this without such a strong relationship - let alone our faith.
Most recently, this afternoon I was able to hold her for about 2 hours. Her heart rate was calm and her blood pressure was down from where it had been. We know that she responds to us in some way. She just seems to be so much more at peace in my arms. I will continue to hold her and soothe her as much as possible. I can't tell you how good it feels to see her calm an breathing on her own, on my chest...like it was just a week ago. Lindsay is holding her as I write and it's wonderful to see that motherly glow in her face. I imagine her taking an afternoon nap on our couch, we long for those days.
Medically, they have weaned her completely off of dopamine, and adjust her oxygen feed as needed there may be a day soon when she doesn't even need that. They are also looking to reduce one of the siezure medications so that she may be less sedated and possibly engage her senses more. We are hoping that when the meds are reduced we will see more of her "typical baby" behavior return. More importantly we want to see her suck and swallow which will mean that when they allow feeding by mouth we can trust that she won't need assistance. Time will tell.
Today is Easter and is a day of rejuvenation, rejoice, and rebirth. We hope and pray that gods plan is to bring back our Delaney to truly be a part of our family. We want her to truly live, engage with us, and have some sense of autonomy. If this is not His plan we hope thy he will embrace her in His arms and bring her in peace to those who have already passed and that they may be able to look after our sweet Delaney.
We hope this message reaches you in peace and happiness on this Easter Sunday. Please continue to share in our intentions. We thank you for being with us on this most difficult stretch of our journey. You continue to give us strength and optimism.
Love,
B & L & d
Saturday, April 23, 2011
Important Delaney Update
The worst fear of a parent is something terrible happening to your child. Something terrible happened to Delaney last Sunday night when we rushed her to the hospital. While we thought the worst was over we have new information that is very concerning and requires your vigilant prayers and positive thoughts. Now more than ever.
After many tests, treatments, and procedures we have had many ups and downs. We have been strong and weak. Our friends and family have lifted us up in our time of need. We need you all more than ever after some devastating news yesterday.
The MRI that was done yesterday shows severe brain trauma throughout. Research has been done following babies with this profile. Most of the babies who live to 15-18 months have severe cerebral palsy, limited motor capabilities, difficulty feeding (some require feeding tubes), and many do not survive.
This is not the kind of news we expected, nor did the Neonatologist. As of yesterday she was just saying that with all of the procedures she has approved, she has done so with the outlook that Delaney would improve and likely experience a full recovery. However the MRI at that point in time was not completed. This new information (her MRI profile) has been researched multiple times in many countries all with similar if not the same results.
We are telling you all of this not to diminish hope, yours or ours. Miracles do happen, she IS our miracle. We just need another one, with your prayers and positive intentions we will see improvement.
We were able to hold her yesterday. During that time her blood pressure was taken, blood was drawn, several older IVs were removed. Each time something was done, Delaney responded as usual, she was pissed off! "Don't touch me!" "I was comfortable there, don't move me!"
Our daughter can get as pissed off as she wants. Get angry. Prove them all wrong.
We named her Delaney ROSE for a reason. My grandmother Rosalind McDonald was THE spitfire of the whole clan. I know that she is with us during this time. She is probably whispering in Delaney's ear, "You give 'em hell!"
During the time that I was holding her there were several moments where her blood pressure was elevated and she arched her back and moved her arms in response to me. I know she feels us near and wants to communicate with us. She's trying so hard! We aren't going anywhere and we will hold her as much as possible to share our healing spirits with her.
We talk to her all day long and tell her that she has a lot of people out there who want to meet her. She's our little rock star and we have people all over the world who are waiting to see her. People believe in her.
We are protecting her as best we can. I tell her all the time, "I got you, I got you"
What is really hard for us to stomach right now is that everything else that has been going on with her body is fixable and she's responding positively to treatment. Her heart looks really good after the catheterization, so good that they've decided to postpone the surgery as long as 6-8 weeks. Her NEC is recovering and with continued antibiotic she should be fine. Her kidney and liver function seem to also be fine. It's so frustrating to us, that had she not required CPR that fateful night we would'nt be worried about her brain function.
Understand that our faith is strong, there is much the medical and scientific community doesn't know about the brain. Moreover they don't "know" where consciousness lies. The brain is simply the mechanism for which consciousness is delivered through our senses, our communication functions. We know that she's in there, she responds to us.
Beyond all of this we do not want her to be suffering or in pain. We want her to be able to engage with us, to communicate, to remain a part of our family.
Please share with us in these intentions to put her in the best possible place to heal. You have her in your hearts as we have her in ours. God gave her to us for a reason, he could have taken her many times and didn't. We know there is a reason for that.
Love,
B & L & d
After many tests, treatments, and procedures we have had many ups and downs. We have been strong and weak. Our friends and family have lifted us up in our time of need. We need you all more than ever after some devastating news yesterday.
The MRI that was done yesterday shows severe brain trauma throughout. Research has been done following babies with this profile. Most of the babies who live to 15-18 months have severe cerebral palsy, limited motor capabilities, difficulty feeding (some require feeding tubes), and many do not survive.
This is not the kind of news we expected, nor did the Neonatologist. As of yesterday she was just saying that with all of the procedures she has approved, she has done so with the outlook that Delaney would improve and likely experience a full recovery. However the MRI at that point in time was not completed. This new information (her MRI profile) has been researched multiple times in many countries all with similar if not the same results.
We are telling you all of this not to diminish hope, yours or ours. Miracles do happen, she IS our miracle. We just need another one, with your prayers and positive intentions we will see improvement.
We were able to hold her yesterday. During that time her blood pressure was taken, blood was drawn, several older IVs were removed. Each time something was done, Delaney responded as usual, she was pissed off! "Don't touch me!" "I was comfortable there, don't move me!"
Our daughter can get as pissed off as she wants. Get angry. Prove them all wrong.
We named her Delaney ROSE for a reason. My grandmother Rosalind McDonald was THE spitfire of the whole clan. I know that she is with us during this time. She is probably whispering in Delaney's ear, "You give 'em hell!"
During the time that I was holding her there were several moments where her blood pressure was elevated and she arched her back and moved her arms in response to me. I know she feels us near and wants to communicate with us. She's trying so hard! We aren't going anywhere and we will hold her as much as possible to share our healing spirits with her.
We talk to her all day long and tell her that she has a lot of people out there who want to meet her. She's our little rock star and we have people all over the world who are waiting to see her. People believe in her.
We are protecting her as best we can. I tell her all the time, "I got you, I got you"
What is really hard for us to stomach right now is that everything else that has been going on with her body is fixable and she's responding positively to treatment. Her heart looks really good after the catheterization, so good that they've decided to postpone the surgery as long as 6-8 weeks. Her NEC is recovering and with continued antibiotic she should be fine. Her kidney and liver function seem to also be fine. It's so frustrating to us, that had she not required CPR that fateful night we would'nt be worried about her brain function.
Understand that our faith is strong, there is much the medical and scientific community doesn't know about the brain. Moreover they don't "know" where consciousness lies. The brain is simply the mechanism for which consciousness is delivered through our senses, our communication functions. We know that she's in there, she responds to us.
Beyond all of this we do not want her to be suffering or in pain. We want her to be able to engage with us, to communicate, to remain a part of our family.
Please share with us in these intentions to put her in the best possible place to heal. You have her in your hearts as we have her in ours. God gave her to us for a reason, he could have taken her many times and didn't. We know there is a reason for that.
Love,
B & L & d
Friday, April 22, 2011
Brian & Lindsay Update
We are so hopeful and glad or the positive trend in Delaney's status. Lindsay and I are holding up as well as we can. We waited a long time for the MRI to complete. It's been the most stressful wait since we've been here. I know that the doctors feel this is routine but the longer it took the more we worried. She's now back in her room and we are finally going to be able to hold her.
What we are finding difficult in the hospital is trying to find a quiet space to remain calm, reflect, and recharge. The biggest struggle this morning has been trying to be as near to her as possible and still have a peaceful place to be as we wait.
The world around us keeps moving as time for us slows down to nearly a stand still. Workers, Nurses, and visitors engage in conversation and banter. I know that they are getting through their relative struggles without an awareness of the needs of others, or their impact on the peace and calm needed for our well being.
I don't fault them exactly, perhaps their exuberant laughter is what provides them the energy to support other in this place. However it doesn't change the fact that we need just twenty minutes of peace and quiet to reenergize and be prepared to support our sweet Delaney.
I just want to scream at the next person who carlessly yells across the room. Or the next person who decides that the dysfunction of Jerry Springer is more important than quiet meditation and comforting a fellow human being.
The need for people to pacify themselves with daytime tv, sarcasm, and a focus on such unimportant details rather than really making an effort to reflect on their situation makes me sick. It's not good for them, and it's making me crazy. I didn't start off today with the best image in my head. I woke up with the frightful memory of holding Delaney as paramedics arrived at our house. We were so scared. I remember thinking that I would hold her like that for as long as it takes, just to make her feel better. As I carried her out to the ambulance the police officer asked if I was cold, "I don't care" is all I could muster. The image of her staring at me trying to breathe is so haunting. I was so helpless. I just thank god every day that we were responsive enough to have called 911 and get her to the proper care without hesitation.
Keep in mind that we are forever optimistic and she has been such a fighter. We know she will get through this. We just need people around us in the hospital to be respectful, courteous, and kind.
Love,
B & L & d
What we are finding difficult in the hospital is trying to find a quiet space to remain calm, reflect, and recharge. The biggest struggle this morning has been trying to be as near to her as possible and still have a peaceful place to be as we wait.
The world around us keeps moving as time for us slows down to nearly a stand still. Workers, Nurses, and visitors engage in conversation and banter. I know that they are getting through their relative struggles without an awareness of the needs of others, or their impact on the peace and calm needed for our well being.
I don't fault them exactly, perhaps their exuberant laughter is what provides them the energy to support other in this place. However it doesn't change the fact that we need just twenty minutes of peace and quiet to reenergize and be prepared to support our sweet Delaney.
I just want to scream at the next person who carlessly yells across the room. Or the next person who decides that the dysfunction of Jerry Springer is more important than quiet meditation and comforting a fellow human being.
The need for people to pacify themselves with daytime tv, sarcasm, and a focus on such unimportant details rather than really making an effort to reflect on their situation makes me sick. It's not good for them, and it's making me crazy. I didn't start off today with the best image in my head. I woke up with the frightful memory of holding Delaney as paramedics arrived at our house. We were so scared. I remember thinking that I would hold her like that for as long as it takes, just to make her feel better. As I carried her out to the ambulance the police officer asked if I was cold, "I don't care" is all I could muster. The image of her staring at me trying to breathe is so haunting. I was so helpless. I just thank god every day that we were responsive enough to have called 911 and get her to the proper care without hesitation.
Keep in mind that we are forever optimistic and she has been such a fighter. We know she will get through this. We just need people around us in the hospital to be respectful, courteous, and kind.
Love,
B & L & d
Improvement
She had a quiet night and uneventful for a change!
This morning the EEG machine has been taken off so we will actually be able to hold her in a few minutes! We can't put into words how much this means to us.
We received an update from cardiology and after consulting with the surgeons (Walters & Delius), if her MRI looks good, and her NEC coninues to improve, Delaney is expected to have her operation next Thursday. Her blood pressure is still better, but does still show a discrepancy in upper and lower. This is still from the Coarc, which was relieved from the Cath but not cured.
Her blood count is low today, so she will be receiving a boost through transfusion to help her hemoglobin and platelets. Her O2 sats have remained in the high 90's which is even better than yesterday. However the boost in hemoglobin will only help.
Her urine oupit has been helped along with diuretics and her puffiness has diminished considerably. Related to that we learned that she has gained weight since being here at Children's which initially we were told that she would likely lose weight. Upon clarification this weight gain is due to increased fluids and her sedation makes it more difficult for her to eliminate. As a result, we will actually see her lose some weight in the near future which is a good thing.
Yesterday we had a wonderful conference with Dr. Sood. She wanted to touch base with is became she was aware of our anxiety regarding many of the procedures that they have been wanting to do. She gave us some very encouraging news that they as a staff collaborate and communicate regularly on each of these diagnostic measures. Further, they never allow one "test" to determine intervention. In addition to that, one of the conversations they have routinely is to determine whether a baby will benefit from intervention...she has felt that without reservation that Delaney will absolutely improve from everything that they have decided to do.
In addition to that, we learned that the head of neurology at CH is the most well regarded in the country (if not the world). He regularly speaks at Harvard and many universities around the world. Dr. Sood reassured us that this is the best hospital she could possibly be at for her conditions. We beleive that, and the pride that all of our doctors take in their work is evident and appreciated.
There are a lot of days between now and her surgery, but we are hopeful that the stability she has achieved over the last 24 hours will maintain and she will be that much stronger and prepared.
She's about to go for her MRI, please pray for a good result!
Love,
B & L & d
This morning the EEG machine has been taken off so we will actually be able to hold her in a few minutes! We can't put into words how much this means to us.
We received an update from cardiology and after consulting with the surgeons (Walters & Delius), if her MRI looks good, and her NEC coninues to improve, Delaney is expected to have her operation next Thursday. Her blood pressure is still better, but does still show a discrepancy in upper and lower. This is still from the Coarc, which was relieved from the Cath but not cured.
Her blood count is low today, so she will be receiving a boost through transfusion to help her hemoglobin and platelets. Her O2 sats have remained in the high 90's which is even better than yesterday. However the boost in hemoglobin will only help.
Her urine oupit has been helped along with diuretics and her puffiness has diminished considerably. Related to that we learned that she has gained weight since being here at Children's which initially we were told that she would likely lose weight. Upon clarification this weight gain is due to increased fluids and her sedation makes it more difficult for her to eliminate. As a result, we will actually see her lose some weight in the near future which is a good thing.
Yesterday we had a wonderful conference with Dr. Sood. She wanted to touch base with is became she was aware of our anxiety regarding many of the procedures that they have been wanting to do. She gave us some very encouraging news that they as a staff collaborate and communicate regularly on each of these diagnostic measures. Further, they never allow one "test" to determine intervention. In addition to that, one of the conversations they have routinely is to determine whether a baby will benefit from intervention...she has felt that without reservation that Delaney will absolutely improve from everything that they have decided to do.
In addition to that, we learned that the head of neurology at CH is the most well regarded in the country (if not the world). He regularly speaks at Harvard and many universities around the world. Dr. Sood reassured us that this is the best hospital she could possibly be at for her conditions. We beleive that, and the pride that all of our doctors take in their work is evident and appreciated.
There are a lot of days between now and her surgery, but we are hopeful that the stability she has achieved over the last 24 hours will maintain and she will be that much stronger and prepared.
She's about to go for her MRI, please pray for a good result!
Love,
B & L & d
Thursday, April 21, 2011
Post Heart-Cath
Since last night after the Heart Catheterization she has been very stable. Her heartrate continues to be solid and bloodpressure has been much better. She has only had very brief instances of O2 dropping, usually related to either being moved due to nursing care, or subtle and not so subtle movement of her own volition. (As our good friend Dr. Weinhouse says, "let her move, it tells me she's healthy!" - and if you don't know the backstory, we must tell you that sometime).
We sat with the specialist who performed the procedure and he was very pleased with how she tolerated. We also saw ultrasound film which showed the before and after of her Aorta. It was so releiving to actually see blood the improved bloodflow. In short, her blood is mixing very well. They no longer see a disparity between Pre and Post. Not only that but I've spoken enough doctors to know when they are feeling legitimately positive. Dr. Gowda was extremely proud of his performance which tells me that we can really trust that when he says the procedure was a success that it is indeed. I asked him if there was a possibility of the Aorta retracting to it's previous state and he said that while it may slightly, this was a long term procedure.
In some cases Catheterization is all that is necessary. In Delaney's heart there are a total of three defects and so for her, open heart surgery to repair the Coarc is still required. We just have more time now to allow herto heal from the initial trauma. Blood sugar and potassium and sodium are also improving. Her urine output is also improving but still needs some help. They are administering diuretics to assist her with elimination of fluid. Now that her circulation is improving the puffiness in her extremities and eyelids should be improving as well.
They are still treating her for NEC, however the most recent x-ray/ultrasound showed improvement. They also have changed from using suction for draining bile/matter from her stomach, to a passive drain and nothing has been coming out (just another indicator of improved function).
They are feeling more comfortable with weaning off support with blood pressure and heart function meds. Also, weaning the O2 since her lung functions have improved.
Today she was originally scheduled for an MRI, but because she was just under sedation yesterday they (and we agree) to postpone the MRI until possibly next week, although it may happen as soon as tomorrow. In it's place they are performing another EEG which the neonatologist feels would be a helpful diagnostic, and may inform us as to what urgency we may need for having an MRI done.
We are always keeping in our hearts and minds our personal experience that her reactivity has been so positive. Despite that fact they do want to rule out siezures so if this data will be helpful in that regard, so be it.
What we are focusing our prayers now is on the doctors and that they will be empowered with all of their knowledge and expertise to provide her as much calm and rest necessary to heal and prepare for surgery. Please share with us these intentions, as you have been with us every step of the way.
We hope that this message reaches you with peace, and happiness.
Love, B & L & d
We sat with the specialist who performed the procedure and he was very pleased with how she tolerated. We also saw ultrasound film which showed the before and after of her Aorta. It was so releiving to actually see blood the improved bloodflow. In short, her blood is mixing very well. They no longer see a disparity between Pre and Post. Not only that but I've spoken enough doctors to know when they are feeling legitimately positive. Dr. Gowda was extremely proud of his performance which tells me that we can really trust that when he says the procedure was a success that it is indeed. I asked him if there was a possibility of the Aorta retracting to it's previous state and he said that while it may slightly, this was a long term procedure.
In some cases Catheterization is all that is necessary. In Delaney's heart there are a total of three defects and so for her, open heart surgery to repair the Coarc is still required. We just have more time now to allow herto heal from the initial trauma. Blood sugar and potassium and sodium are also improving. Her urine output is also improving but still needs some help. They are administering diuretics to assist her with elimination of fluid. Now that her circulation is improving the puffiness in her extremities and eyelids should be improving as well.
They are still treating her for NEC, however the most recent x-ray/ultrasound showed improvement. They also have changed from using suction for draining bile/matter from her stomach, to a passive drain and nothing has been coming out (just another indicator of improved function).
They are feeling more comfortable with weaning off support with blood pressure and heart function meds. Also, weaning the O2 since her lung functions have improved.
Today she was originally scheduled for an MRI, but because she was just under sedation yesterday they (and we agree) to postpone the MRI until possibly next week, although it may happen as soon as tomorrow. In it's place they are performing another EEG which the neonatologist feels would be a helpful diagnostic, and may inform us as to what urgency we may need for having an MRI done.
We are always keeping in our hearts and minds our personal experience that her reactivity has been so positive. Despite that fact they do want to rule out siezures so if this data will be helpful in that regard, so be it.
What we are focusing our prayers now is on the doctors and that they will be empowered with all of their knowledge and expertise to provide her as much calm and rest necessary to heal and prepare for surgery. Please share with us these intentions, as you have been with us every step of the way.
We hope that this message reaches you with peace, and happiness.
Love, B & L & d
Wednesday, April 20, 2011
Update
Last night Delaney was having trouble keeping her O2 sats above 85%, after draining fluids off of her lungs, trying an alternate (Oscilating) ventilator then returning back to the original vent her sats finally went back up into the 95% range and above.
Our cardiologist has been monitoring her extremely closely and has been in Delaney's corner all the way. While many babies in the NICU can and should at times have lower O2 sats, Delaney is older and has fully developed lungs and should have higher sats. It is standard protocol that babies who stabilize are weaned off of ventilation and meds that maintain heart and lung function. She had ordered that these procedures to support heart and lung function are maintained for a period of time so she can remain consistent, calm, and steady. Dr. Summerfield is incredibly patient, diligent, and steadfast. She speaks to us as peers which I greatly appreciate. We have so much faith in her knowledge and ability.
Very soon (roughly 1:30pm) we are expecting to have an MRI on her brain to gather more information. Anesthesiology will be taking her soon to prep her for what should be about a 45min procedure. While all the data they are gathering is important, we are focusing on our experience with her which continues to be positive. She is still responsive to our touch and voice, while subtle, it is so reassuring.
We are having a blanket from home brought so that she may have something familiar near her at all times. It will have our scents on it as well, so she knows we are close. We talk to her and soothe her as best we can.
One nice thing that they have recommended is that we use Lindsay's breastmilk for Delaney's oral care. This helps clean her mouth and protect against bacteria. Lindsay was able to do this procedure twice already which has been nice for her to be a part of her general care. It's comforting to feel we are a part of the team taking care of her since we've doing that for the last four weeks before all this happened.
We are amazed by the outpouring of love, affection, and prayers. We have people now from all over the world contacting us with well-wishing and prayers. We've even had requests put in for buddhist monks to chant prayers for her!
We our intently focusing our positive intentions for her near term recovery, her strong growth and development, and a long life filled with joy and wonder. Please share in these intentions as we move forward moment to moment, and day to day.
Love,
B & L & d
Our cardiologist has been monitoring her extremely closely and has been in Delaney's corner all the way. While many babies in the NICU can and should at times have lower O2 sats, Delaney is older and has fully developed lungs and should have higher sats. It is standard protocol that babies who stabilize are weaned off of ventilation and meds that maintain heart and lung function. She had ordered that these procedures to support heart and lung function are maintained for a period of time so she can remain consistent, calm, and steady. Dr. Summerfield is incredibly patient, diligent, and steadfast. She speaks to us as peers which I greatly appreciate. We have so much faith in her knowledge and ability.
Very soon (roughly 1:30pm) we are expecting to have an MRI on her brain to gather more information. Anesthesiology will be taking her soon to prep her for what should be about a 45min procedure. While all the data they are gathering is important, we are focusing on our experience with her which continues to be positive. She is still responsive to our touch and voice, while subtle, it is so reassuring.
We are having a blanket from home brought so that she may have something familiar near her at all times. It will have our scents on it as well, so she knows we are close. We talk to her and soothe her as best we can.
One nice thing that they have recommended is that we use Lindsay's breastmilk for Delaney's oral care. This helps clean her mouth and protect against bacteria. Lindsay was able to do this procedure twice already which has been nice for her to be a part of her general care. It's comforting to feel we are a part of the team taking care of her since we've doing that for the last four weeks before all this happened.
We are amazed by the outpouring of love, affection, and prayers. We have people now from all over the world contacting us with well-wishing and prayers. We've even had requests put in for buddhist monks to chant prayers for her!
We our intently focusing our positive intentions for her near term recovery, her strong growth and development, and a long life filled with joy and wonder. Please share in these intentions as we move forward moment to moment, and day to day.
Love,
B & L & d
Tuesday, April 19, 2011
Delaney Update
Thank you all so much for checking on us, we feel very blessed to have such caring, friends, relatives, doctors, nurses, and staff helping us through this difficult time. We love you for all the support you have given us and helped to facilitate.
It's been a whirlwind the last 36 hours. Delaney is stable but very fragile right now. We've spent a lot of time with her today. She was the most responsive that she's been since Sunday. She responds to our voices, presence, and touch. Keep in mind that while the medical updates below are scary in part, we have become much more positive with every physical contact we've had with our precious little girl. We see glimpses of normal responses that we've come to expect from getting to know her this first month of life - which is so reassuring. She tries to speak but can't because of the vent, but her eyes are active and her little arms and legs move when we touch her. I know that she just wants us to pick her up and soothe her, but we can't right now. We give her all kinds of gentle strokes, and speak softly to her with all of our words of love and affection. We know she hears us and know that this is the kind of "medicine" for which she can't get enough.
Last night her color had returned and she seemed a bit more responsive despite the sedation, which has only improved. Her vitals have been getting better, although they are monitoring her O2 levels and they have had to decrease and increase support accordingly.
Last night they reported that the Prostiglandin had not reopended the vessel. While this is unlikely to occur, it has had an unexpected positive effect of opening the coarctation which has impoved blood pressure in her lower extremities and digestive system. She is also still receiving dopamine to maintain good heart function.
They are prescribing meds to prevent siezures, there have been some concerns since the EEG was done yesterday. According to the findings, her brain activity has been intermittent and his is the most scary finding, however infant EEGs are very diffcult to get as clear a picture as they can for adults. While the EEG was not normal we are focusing on what we are seeing as parents and trusting our instincts; which have been spot on from the start.
They also had an echo of her brain, for which we have not gotten a full report, however based on that report they plan to do an MRI tomorrow morning.
They are also taking precautions against Necrotizing Enterocolitis (NEC) and added another antibiotic. Although, surgery for this has been ruled out. The last blood count was of concern so they asked us to authorize a transfusion of plasma, and also give them permission to transfuse all blood products if necessary. They seem to be balancing the most parsimoniumous approach with truly covering all bases. So far all of the doctors and nurses have been fabulous, we feel she is well monitored and looked after. It's just very hard not to be able to hold her and have her with us.
The doctors feel she is improving however everything is a delicate balance. They are monitoring everything very closely, making subtle adjustments to meds as needed. We are staying at the Ronald McDonald house and glad we were able to sleep a bit last night. Although sleep right now is the least of our concerns, their facilities are amazing and the people who run the house are the most kindhearted and caring individuals. If you ever feel compelled to donate to charities we fully support you doing so to the Ronald McDonald House and Children's Hospital, these are very special organizations.
Love, Brian & Lindsay & Delaney
It's been a whirlwind the last 36 hours. Delaney is stable but very fragile right now. We've spent a lot of time with her today. She was the most responsive that she's been since Sunday. She responds to our voices, presence, and touch. Keep in mind that while the medical updates below are scary in part, we have become much more positive with every physical contact we've had with our precious little girl. We see glimpses of normal responses that we've come to expect from getting to know her this first month of life - which is so reassuring. She tries to speak but can't because of the vent, but her eyes are active and her little arms and legs move when we touch her. I know that she just wants us to pick her up and soothe her, but we can't right now. We give her all kinds of gentle strokes, and speak softly to her with all of our words of love and affection. We know she hears us and know that this is the kind of "medicine" for which she can't get enough.
Last night her color had returned and she seemed a bit more responsive despite the sedation, which has only improved. Her vitals have been getting better, although they are monitoring her O2 levels and they have had to decrease and increase support accordingly.
Last night they reported that the Prostiglandin had not reopended the vessel. While this is unlikely to occur, it has had an unexpected positive effect of opening the coarctation which has impoved blood pressure in her lower extremities and digestive system. She is also still receiving dopamine to maintain good heart function.
They are prescribing meds to prevent siezures, there have been some concerns since the EEG was done yesterday. According to the findings, her brain activity has been intermittent and his is the most scary finding, however infant EEGs are very diffcult to get as clear a picture as they can for adults. While the EEG was not normal we are focusing on what we are seeing as parents and trusting our instincts; which have been spot on from the start.
They also had an echo of her brain, for which we have not gotten a full report, however based on that report they plan to do an MRI tomorrow morning.
They are also taking precautions against Necrotizing Enterocolitis (NEC) and added another antibiotic. Although, surgery for this has been ruled out. The last blood count was of concern so they asked us to authorize a transfusion of plasma, and also give them permission to transfuse all blood products if necessary. They seem to be balancing the most parsimoniumous approach with truly covering all bases. So far all of the doctors and nurses have been fabulous, we feel she is well monitored and looked after. It's just very hard not to be able to hold her and have her with us.
The doctors feel she is improving however everything is a delicate balance. They are monitoring everything very closely, making subtle adjustments to meds as needed. We are staying at the Ronald McDonald house and glad we were able to sleep a bit last night. Although sleep right now is the least of our concerns, their facilities are amazing and the people who run the house are the most kindhearted and caring individuals. If you ever feel compelled to donate to charities we fully support you doing so to the Ronald McDonald House and Children's Hospital, these are very special organizations.
Love, Brian & Lindsay & Delaney
Monday, April 18, 2011
Delaney Update 4/18
Dear friends,
You may or may not know that we had to rush Delaney to the hospital via ambulance last night. She was not breathing well, and didn't look herself at all. Upon arrival at the hospital she was admitted immediately to the NICU. Our cardiologist was contacted and he arrived shortly thereafter. At the time he suspected that there was a defect that would require surgery. All of the symptoms were there and to be on the safe side they prepared her to transfer to Children's Hospital.
During the prep for transfer, her heartrate slowed severely and CPR was administered. We were present for most of the CPR which was incredibly scary, but heartrate returned successfully. After she was stabilized we called for a chaplan, and she baptized Delaney.
At approximately 2:00 in the morning we arrived at Children's where she has been stable ever since. The Cardiologists at Children's ran all their diagnostics and have the full picture of her heart issues.
She has three heart defects. We knew about the VSD (murmur), there are two others; Coarctation and a Patent Formen Ovale (PFO). All of these are to be repaired during surgery. In order for the surgery to go as well as possible they need her to continue to remain stable. They need for her electrolytes to continue to improve and she needs to heal from the initial trauma from the last 24 hours. The more days they can keep her stabilized and resting the better the chances the surgery will be a success.
She may be in the hospital for the next 5 days before surgery. The latest issue we are waiting on is that they would like a better IV for the prostiglandin, most of the veins that they typically use are already occupied, so they will pobably use a femoral location. This will ensure that they will be able to get a solid line for all of the meds and nutrition. Lindsay and I will probably be spending the next few days at Ronald McDonald House so we can be as close as possible.
Please continue to send your prayers. We'll keep you posted as we learn more.
All of our love, Brian, Lindsay, & Delaney
You may or may not know that we had to rush Delaney to the hospital via ambulance last night. She was not breathing well, and didn't look herself at all. Upon arrival at the hospital she was admitted immediately to the NICU. Our cardiologist was contacted and he arrived shortly thereafter. At the time he suspected that there was a defect that would require surgery. All of the symptoms were there and to be on the safe side they prepared her to transfer to Children's Hospital.
During the prep for transfer, her heartrate slowed severely and CPR was administered. We were present for most of the CPR which was incredibly scary, but heartrate returned successfully. After she was stabilized we called for a chaplan, and she baptized Delaney.
At approximately 2:00 in the morning we arrived at Children's where she has been stable ever since. The Cardiologists at Children's ran all their diagnostics and have the full picture of her heart issues.
She has three heart defects. We knew about the VSD (murmur), there are two others; Coarctation and a Patent Formen Ovale (PFO). All of these are to be repaired during surgery. In order for the surgery to go as well as possible they need her to continue to remain stable. They need for her electrolytes to continue to improve and she needs to heal from the initial trauma from the last 24 hours. The more days they can keep her stabilized and resting the better the chances the surgery will be a success.
She may be in the hospital for the next 5 days before surgery. The latest issue we are waiting on is that they would like a better IV for the prostiglandin, most of the veins that they typically use are already occupied, so they will pobably use a femoral location. This will ensure that they will be able to get a solid line for all of the meds and nutrition. Lindsay and I will probably be spending the next few days at Ronald McDonald House so we can be as close as possible.
Please continue to send your prayers. We'll keep you posted as we learn more.
All of our love, Brian, Lindsay, & Delaney
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