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
Showing posts with label MRI. Show all posts
Showing posts with label MRI. Show all posts
Saturday, April 23, 2011
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
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
Subscribe to:
Posts (Atom)