That was Drayke's due date last year. The breastfeeding coordinator for WIC left a voice mail this last week asking if I needed any help with breast feeding since my child was due any day now. She obviously had the incorrect year in her planner. I need to call her back to let her know I am not ignoring her and let her know what happened.
Breast feeding was one of the things I was really looking forward to doing for my son. Being in the NICU and pumping I did not have nearly the success as I wanted & had to stop after three months. But I did try. Every mother should give breast feeding a chance. It is the best thing you can do for your child after they are born.
Sunday, July 19, 2009
Friday, June 26, 2009
I forgot to mention
One of the the surprising things from the autopsy was the fact neither Drayke's laranyx nor esophagus were damaged during all that time he was intubated. That is pretty darned amazing.
Wednesday, June 17, 2009
Autopsy results
Met with Drayke's last doctor & one of his daytime primary nurses. We met in the room we used to go to regularly for Parent Reach Out meetings every Wednesday. Just being back in the hospital was hard enough. Being on the 4th floor, which is the NICU was even harder.
There were surprises in the autopsy results. We thought the problem was type a flu. His nasal swab was positive. They ran the test on his lungs & heart and they were negative. The flu didnt kill him. It was a massive bowel infection that he could not fight. He was loaded with antibiotics but he just did not have enough reserves to be able to fight anything. All of his energy had gone into healing from the surgery we had wanted so badly: the trach/gtube/circumsision surgery the week before. A few days before that surgery he wasnt feeling great. I remember telling him "cmon baby boy, we have your surgery scheduled finally. You cant get sick now". We went thru with the surgery, now I am kicking myself for not paying more attention to the signs that he was getting sick before his surgery. I feel like I was being selfish in my desires to finally have a tape free baby. We should have waited another two weeks.
The biggest problem was that the bowel infection effected the perfusion of blood in his bowels and then his brain & the rest of his body systems.
We did have it confirmed that his hair was red blond and he had grey blue eyes (we never had bright light in his room). Other than having pulmonary hypertrophy & pulmonary hypertension he was otherwise perfect. All of his other organs we all very normal.
At this point it is all speculation as how things could have been different. What if my boss had not have fired me, leading to my severe blood pressure problems thus stunting Draykes growth in my womb during that last month.
There were surprises in the autopsy results. We thought the problem was type a flu. His nasal swab was positive. They ran the test on his lungs & heart and they were negative. The flu didnt kill him. It was a massive bowel infection that he could not fight. He was loaded with antibiotics but he just did not have enough reserves to be able to fight anything. All of his energy had gone into healing from the surgery we had wanted so badly: the trach/gtube/circumsision surgery the week before. A few days before that surgery he wasnt feeling great. I remember telling him "cmon baby boy, we have your surgery scheduled finally. You cant get sick now". We went thru with the surgery, now I am kicking myself for not paying more attention to the signs that he was getting sick before his surgery. I feel like I was being selfish in my desires to finally have a tape free baby. We should have waited another two weeks.
The biggest problem was that the bowel infection effected the perfusion of blood in his bowels and then his brain & the rest of his body systems.
We did have it confirmed that his hair was red blond and he had grey blue eyes (we never had bright light in his room). Other than having pulmonary hypertrophy & pulmonary hypertension he was otherwise perfect. All of his other organs we all very normal.
At this point it is all speculation as how things could have been different. What if my boss had not have fired me, leading to my severe blood pressure problems thus stunting Draykes growth in my womb during that last month.
Monday, May 25, 2009
Picture post
These are pictures all taken a month apart, except for his first ultrasound, of our little man Drayke. All the way from his first ultrasound to his last day with us. As one of our primary nurses would call him "Handsome Pants"
Sunday, May 10, 2009
Happy Mother's Day
Been thinking so much about Drayke today. How my mothers day was last year. Even dad has been a mess.
Wednesday, April 29, 2009
Preventive Measures for Flu Outbreaks
This is near & dear to my heart. I am all but fanatical since Drayke's birth and even more so since his death was caused by Type 1 flu. I have the bad feeling this flu pandemic is going to hit our littlest ones the hardest. Please take the time to take preventative measures.
The recent outbreak of swine flu has many people wondering what they can do to protect themselves and their families against this virus. Here are five simple precautionary measures from the Center for Disease Control (CDC):
1.Clean your hands often. Use soap and hot water and wash for at least 20 seconds — that’s about the amount of time it takes to sing “Happy Birthday” twice. If soap and water are not available, use alcohol-based hand sanitizers (The CDC recommends sanitizers with at least 60% alcohol concentration).
2.Avoid touching your eyes, nose and mouth — these are easiest paths for the virus to invade your body.
3.Cover your mouth and nose with a tissue when coughing or sneezing. Throw the tissue away immediately after use, and then clean your hands. If a tissue is not immediately available, cough into your sleeve or elbow, NOT into your hands. (If you cough or sneeze into your hands, you can transfer the virus to the surfaces you touch, potentially exposing those who touch the same surfaces after you.)
4.Avoid close contact with those who are sick.
5.If you do become ill, stay at home to help prevent the spread of the virus.
If you have children, be sure to take the time to teach them these healthy habits. Good hygiene is one the best weapons we have to limit the spread of the flu, so stay clean to stay healthy!
The recent outbreak of swine flu has many people wondering what they can do to protect themselves and their families against this virus. Here are five simple precautionary measures from the Center for Disease Control (CDC):
1.Clean your hands often. Use soap and hot water and wash for at least 20 seconds — that’s about the amount of time it takes to sing “Happy Birthday” twice. If soap and water are not available, use alcohol-based hand sanitizers (The CDC recommends sanitizers with at least 60% alcohol concentration).
2.Avoid touching your eyes, nose and mouth — these are easiest paths for the virus to invade your body.
3.Cover your mouth and nose with a tissue when coughing or sneezing. Throw the tissue away immediately after use, and then clean your hands. If a tissue is not immediately available, cough into your sleeve or elbow, NOT into your hands. (If you cough or sneeze into your hands, you can transfer the virus to the surfaces you touch, potentially exposing those who touch the same surfaces after you.)
4.Avoid close contact with those who are sick.
5.If you do become ill, stay at home to help prevent the spread of the virus.
If you have children, be sure to take the time to teach them these healthy habits. Good hygiene is one the best weapons we have to limit the spread of the flu, so stay clean to stay healthy!
Have new pictures
We now have the disk of pictures that were taken by the hospital photographer. There is so much pain in these pictures. I know Drayke wasnt feeling any pain but his father & I. It was painful just to look at us, seeing our world fall apart in our arms. Watching all of our hopes & dreams slowly fade away. This picture is probably the calmest shot of us that day.
Tuesday, April 28, 2009
365 days ago today
Our little man, Drayke Alan, came into this world with a bang. He surprised everyone with the fact he chose to holler to let his mama know he was here. He may have been a teeny tiny little bug but he made his presence known to the world.
This morning at 9:55 I was at the rec center here in Lewisburg and parked by the childrens play area. I cried a bit and had a "conversation" with him. I told him how he was going to get a cupcake with a candle in it just like I did on my first birthday. He also would have gotten some clothes, a toy or 2 and a box with some wrapping paper to play with. Babies always seem more interested in the wrapping than the gift itself.
It's been a hard day so far. Hell, it's been a hard year. Over the last 3 months there has yet to be a full 24 hour period where I dont cry. I still try to figure out way for me to have another baby. Nobody could ever replace Drayke. Never. But I want a child so deeply that I believe it is the only thing that could fill the gaping emptyness in my soul. I want to feel the joy of holding my child in my arms again.
This morning at 9:55 I was at the rec center here in Lewisburg and parked by the childrens play area. I cried a bit and had a "conversation" with him. I told him how he was going to get a cupcake with a candle in it just like I did on my first birthday. He also would have gotten some clothes, a toy or 2 and a box with some wrapping paper to play with. Babies always seem more interested in the wrapping than the gift itself.
It's been a hard day so far. Hell, it's been a hard year. Over the last 3 months there has yet to be a full 24 hour period where I dont cry. I still try to figure out way for me to have another baby. Nobody could ever replace Drayke. Never. But I want a child so deeply that I believe it is the only thing that could fill the gaping emptyness in my soul. I want to feel the joy of holding my child in my arms again.
Thursday, April 23, 2009
A wonderful gift
While I was sewing today, dad dropped a small package off on the table. I had no clue, he thought it was something from Ebay.
It was a beautiful card and two pendants one of the readers of this blog, sent to both of us in rememberance of Drayke's first birthday which is coming up on Tuesday. I just broke down. The thought was so touching and wonderful, I was overwhelmed as was dad. We held onto each other as we cried at the beauty of the gifts. 2 hearts in pure silver, each bearing Drayke's name and date of birth. On mine are 3 crystals representing his birthstone, diamond, and the 3 of us together. Just incredible. I have them safe in Drayke's urn until I put them on chains. I dont know why but that just felt right.
I want to thank you Lora. Yes, they will be worn and loved. Iam speechless at your caring. Hugs to you & yours.
It was a beautiful card and two pendants one of the readers of this blog, sent to both of us in rememberance of Drayke's first birthday which is coming up on Tuesday. I just broke down. The thought was so touching and wonderful, I was overwhelmed as was dad. We held onto each other as we cried at the beauty of the gifts. 2 hearts in pure silver, each bearing Drayke's name and date of birth. On mine are 3 crystals representing his birthstone, diamond, and the 3 of us together. Just incredible. I have them safe in Drayke's urn until I put them on chains. I dont know why but that just felt right.
I want to thank you Lora. Yes, they will be worn and loved. Iam speechless at your caring. Hugs to you & yours.
Thursday, April 16, 2009
Saturday is the big day
Both Saturday & Sunday are the walks for March of Babies in Lewisburg & Nashville, respectively. Dad is not going to make it on Saturday as that he has to goto school. Sunday is going to be the fun one though.
We are supposed to be having some celebrities walking with us including Nicole Kidman. So that will make for some great media covereage.
I am nowhere near my goal of $1000 but it was a pretty lofty goal for a first year so soon after the loss of Drayke. For next year I have some ideas twirling around in my head.
We are supposed to be having some celebrities walking with us including Nicole Kidman. So that will make for some great media covereage.
I am nowhere near my goal of $1000 but it was a pretty lofty goal for a first year so soon after the loss of Drayke. For next year I have some ideas twirling around in my head.
Friday, April 10, 2009
It was a year ago
I was admitted to the hospital a year ago today, yo make sure little man stayed where he was supposed to. I had gone in for a follow up visit with my OB/GYN. THe week before on April 2nd I had been terminated out of the blue from my job of more than a year. That was the beginning of the end of having a nice fairly simple pregnancy.
In January, two weeks after I had discovered that I was pregnant, I almost lost the baby due to bleeding. The doctor never found the cause for the two emergency room visits but I did go on bed rest for a week. After that point everything changed at work concerning my boss. He became a control freak and change the way we ran business in the processing department. However, everything with the pregnancy was going perfect. Drayke was growing and thriving. I had never felt better in my life as that pregnancy really suited me well.
When I was terminated in April, there was no written warning, no real discussion, only threatening email. That morning when I arrived at Dad's office I told him how my chest hurt & the baby was being extremely active. Dad drove me to the hospital in Nashville where I had planned on delivering Drayke and was told my blood pressure was 184/127. I stayed there for about 4 hours then was released home & to follow up the folling week with my OB. My blood pressure was better but I was spilling proteins. The doctor then told me that I was getting admitted.
So many things happened while I was in the hospital. Besides being in a panic over the job situation my house in Florida was broken into where every room took damage by a vagrant who decided he needed a place to live; watching tv in the afternoon, seeing storms with tornadoes go over our home here in Tennessee; being terrified of having to stay on bedrest and getting proceedures done to me that I had never expected. I was in an almost constant state of panic. I should have had the doctors give me some kind of anti anxiety med because it ended up causing me to have my son far too early.
There is a part of me that will always blame my former boss for terminating me at the worst possible time in my life and myself for not handling stress better, for the eventual loss of my son. To have a pregnancy go from being almost effortless to catastrophicly bad. There are so many "would have should have could haves" that go thru my mind every day, knowing that if things had been just a tad different in April of last year Drayke may have still been with us.
In January, two weeks after I had discovered that I was pregnant, I almost lost the baby due to bleeding. The doctor never found the cause for the two emergency room visits but I did go on bed rest for a week. After that point everything changed at work concerning my boss. He became a control freak and change the way we ran business in the processing department. However, everything with the pregnancy was going perfect. Drayke was growing and thriving. I had never felt better in my life as that pregnancy really suited me well.
When I was terminated in April, there was no written warning, no real discussion, only threatening email. That morning when I arrived at Dad's office I told him how my chest hurt & the baby was being extremely active. Dad drove me to the hospital in Nashville where I had planned on delivering Drayke and was told my blood pressure was 184/127. I stayed there for about 4 hours then was released home & to follow up the folling week with my OB. My blood pressure was better but I was spilling proteins. The doctor then told me that I was getting admitted.
So many things happened while I was in the hospital. Besides being in a panic over the job situation my house in Florida was broken into where every room took damage by a vagrant who decided he needed a place to live; watching tv in the afternoon, seeing storms with tornadoes go over our home here in Tennessee; being terrified of having to stay on bedrest and getting proceedures done to me that I had never expected. I was in an almost constant state of panic. I should have had the doctors give me some kind of anti anxiety med because it ended up causing me to have my son far too early.
There is a part of me that will always blame my former boss for terminating me at the worst possible time in my life and myself for not handling stress better, for the eventual loss of my son. To have a pregnancy go from being almost effortless to catastrophicly bad. There are so many "would have should have could haves" that go thru my mind every day, knowing that if things had been just a tad different in April of last year Drayke may have still been with us.
Friday, April 3, 2009
I am particiapting in the March of Dimes March for Babies in my son's name
Please sponsor Team Drayke as I walk to help prevent premature births. My son Drayke was a preemie who didnt make it. Let's not let it happen in the future.
Sunday, March 29, 2009
Sad day
I went onto my Facebook today where I am friends with several parents I know thru Ronald McDonald House. We all became a family while staying there.
This morning thru FB I discovered that one of the couples that shared the room next to mine lost their son today. He was almost 5 months old.
I read the post and all I could do was say "no" and cried.
I always worry about the other babies still at the hospital or recently released. Daxton, Payton, Kinsley, Landon, Corbin, JJ, ReAsia, Alanha and more. It is almost like a twisted drug for me, the need to know they are doing good. It is crushing when I hear when they aren't doing well or worse.
It only reinforces that I need to get my nursing degree so I can help, one way or another.
This morning thru FB I discovered that one of the couples that shared the room next to mine lost their son today. He was almost 5 months old.
I read the post and all I could do was say "no" and cried.
I always worry about the other babies still at the hospital or recently released. Daxton, Payton, Kinsley, Landon, Corbin, JJ, ReAsia, Alanha and more. It is almost like a twisted drug for me, the need to know they are doing good. It is crushing when I hear when they aren't doing well or worse.
It only reinforces that I need to get my nursing degree so I can help, one way or another.
Wednesday, March 18, 2009
I now have Drayke's ashes
I made the appointment this morning to meet up descedant services. I went to Marie's desk where I saw a simple white gift bag and I fell apart.
After I calmed down a bit she removed his little urn. The wood is a gorgeous deep red mahogany, about 5" x 3". She asked if I wanted to see the remains, mostly to let me know that they're not open in the box and the tag that was enclosed. The box is lined in a deep green velvet. I told Marie "there isn't hardly anything there". I could hold his entire cremains in the palm of my hand. About 2" across and 1" deep. Inside the bag I could see the tag that was matched up with the one they had on his ankle in the morgue to make sure that I do indeed have my son. I cried again due to knowing how my gorgeous growing fifteen plus pound boy has been reduced to something smaller than my phone.
I signed the paperwork and put his urn in his small diaper bag along with a newborn diaper to pad the bottom. It took everything I had in me to walk from the office over to the parking garage without having a complete breakdown. I didnt quite make it to the car. I bawled for about twenty minutes before I could start the car. I wrapped the diaper bag with the blanket Robert had made him for his journey home.
In May, just after I was released from the hospital, I had a tag made at Walmart. A big red heart with Drayke's name and date of birth. I had promised myself that I would never take it off until he came home. The only time I took it off I had an MRI. At the same time he crashed at the hospital. That was the one and only time it has been off of my neck.
Drayke is home now.
It will now stay with him in his urn because my heart will forever be with my son.
After I calmed down a bit she removed his little urn. The wood is a gorgeous deep red mahogany, about 5" x 3". She asked if I wanted to see the remains, mostly to let me know that they're not open in the box and the tag that was enclosed. The box is lined in a deep green velvet. I told Marie "there isn't hardly anything there". I could hold his entire cremains in the palm of my hand. About 2" across and 1" deep. Inside the bag I could see the tag that was matched up with the one they had on his ankle in the morgue to make sure that I do indeed have my son. I cried again due to knowing how my gorgeous growing fifteen plus pound boy has been reduced to something smaller than my phone.
I signed the paperwork and put his urn in his small diaper bag along with a newborn diaper to pad the bottom. It took everything I had in me to walk from the office over to the parking garage without having a complete breakdown. I didnt quite make it to the car. I bawled for about twenty minutes before I could start the car. I wrapped the diaper bag with the blanket Robert had made him for his journey home.
In May, just after I was released from the hospital, I had a tag made at Walmart. A big red heart with Drayke's name and date of birth. I had promised myself that I would never take it off until he came home. The only time I took it off I had an MRI. At the same time he crashed at the hospital. That was the one and only time it has been off of my neck.
Drayke is home now.
It will now stay with him in his urn because my heart will forever be with my son.
Saturday, March 14, 2009
Thinking about you
It is so hard to not think about you my dear little boy. I feel your pressence around me every day and feel your strength. Everyone says it gets easier and I know it does eventually but right now it does not feel like it does. You are in my thoughts day in and day out. When I watch Television it reminds me of you. When I go to the store I see something that I want to get for you but I know you are not here. I do not want to wash the shirt I wore when you left us. You are never forgotten and are always in my heart. Everyday I have to take a few moments of silence at my desk when I look at your pictures. I still cry at a moments notice.
Saturday, February 28, 2009
My sweet son Drayke
You should have turned ten months old today.
Just over a month ago you were taken from me.
Not an hour goes by where I don't think of you, longing that you were here in my arms.
My heart and soul will never be complete until I am with you again.
I shall love you for all eternity.
Wednesday, February 25, 2009
March for Babies update
The Lewisburg TN march is on April 18th. Nashville is the following day, April 19th.
For information in your area, goto marchforbabies.org and enter your zip to find the event in your area.
For information in your area, goto marchforbabies.org and enter your zip to find the event in your area.
Sunday, February 22, 2009
Participating in the March for Babies
This year I will be participating in two March for Babies events here in Tennessee. One in Lewisburg, the other in Nashville. I am walking in memory of my son Drayke and all the other babies I have seen lost during my stay at both Centennial & Vanderbilt NICU's. The March of Dimes has done so much for premature babies but more is needed. Please sponsor me in this as it goes to one of the most worthy causes I know of, our future children.
Friday, February 20, 2009
Video of my sweet little man
This vid was taken on January 17th, the day after his trach surgery. It was so cute watching him discover he could finally use his upper lip and cheeks to smile at his mobile. He is all shiny because I had his face slathered in vitamin E to help with the old tape sores. The nurse had the jury rig a blanket to make sure he couldn't reach his trach with his hands and pull it out.
You can just see it all over his face: mischief is my middle name!
The Shopping Trip by Linda Vicory
As I persue the aisles,
of the local store,
I see things more differently,
than I ever have before.
"Daddy's Little Angel",
the embroidered bibs do read.
But, Daddy's angel is in Heaven,
and bibs she does not need.
She does not need a bottle,
a dress or a toy.
Of buying those things for her,
we shall never know the joy.
There are tiny jars of baby food,
that she will never eat,
And shiny shoes with buckles,
that will never touch her feet.
As the bikes and trikes taunt me,
from high up on the rack,
Tears will break free from my eyes,
if I dare look back.
I run off to the restroom,
to blow my nose and cry.
I wipe my eyes, swallow hard,
and let out a sigh.
I must go face the paper,
college and wide rule,
That my little angel,
will never use in school.
I hurry past the greeting cards,
that the people chose with care,
And I am reminded,
of the holidays we shall not share.
In the checkout line I bow my head,
and heavy is my heart,
For the family right in front of me,
has a newborn in their cart.
Shopping in the local store,
used to be mundane.
Now every aisle's full of items,
which remind me of my pain.
So, quick as I can, I give the cashier,
the money from my purse,
And hurry away from those who don't know my pain,
in this foreignly happy universe.
This poem hit hard with me because it is so true. Everywhere I look I see things I wanted for Drayke. I found myself bursting out in tears looking at a lamp at Walmart knowing how cute it would be in his room. The cute stuffed dragon at Cracker Barrel. The Spyro video game daddy was so looking forward to having Drayke on his lap as he played the game for him. People say take down the nursery so you aren't reminded all the time of your loss. It would make no difference. I am reminded everytime I drive by a park, a school, go into a store or watch a movie. I look into my rear view mirror and don't see the car seat that is supposed to be there. I see how I wanted my son in every aspect in my life and am always reminded he is not here with me.
of the local store,
I see things more differently,
than I ever have before.
"Daddy's Little Angel",
the embroidered bibs do read.
But, Daddy's angel is in Heaven,
and bibs she does not need.
She does not need a bottle,
a dress or a toy.
Of buying those things for her,
we shall never know the joy.
There are tiny jars of baby food,
that she will never eat,
And shiny shoes with buckles,
that will never touch her feet.
As the bikes and trikes taunt me,
from high up on the rack,
Tears will break free from my eyes,
if I dare look back.
I run off to the restroom,
to blow my nose and cry.
I wipe my eyes, swallow hard,
and let out a sigh.
I must go face the paper,
college and wide rule,
That my little angel,
will never use in school.
I hurry past the greeting cards,
that the people chose with care,
And I am reminded,
of the holidays we shall not share.
In the checkout line I bow my head,
and heavy is my heart,
For the family right in front of me,
has a newborn in their cart.
Shopping in the local store,
used to be mundane.
Now every aisle's full of items,
which remind me of my pain.
So, quick as I can, I give the cashier,
the money from my purse,
And hurry away from those who don't know my pain,
in this foreignly happy universe.
This poem hit hard with me because it is so true. Everywhere I look I see things I wanted for Drayke. I found myself bursting out in tears looking at a lamp at Walmart knowing how cute it would be in his room. The cute stuffed dragon at Cracker Barrel. The Spyro video game daddy was so looking forward to having Drayke on his lap as he played the game for him. People say take down the nursery so you aren't reminded all the time of your loss. It would make no difference. I am reminded everytime I drive by a park, a school, go into a store or watch a movie. I look into my rear view mirror and don't see the car seat that is supposed to be there. I see how I wanted my son in every aspect in my life and am always reminded he is not here with me.
A Poem By Joanne Cacciatore
Dearest Mommy,
When you wonder the meaning of life and love
Know that I am with you
Close your eyes and feel me kissing you
In the gentle breeze across your cheek
When you begin to doubt that you shall ever see me again
Quiet your mind and hear me
I am in the whisper of the heavens
Speaking of your love
When you lose your identity
When you question who you are
Where you are going
Open your heart and see me
I am the twinkle in the stars
Smiling down upon you
Lighting the path for your journey
When you awaken each morning
Not remembering your dreams
But feeling content and serene
Know that I was with you
Filling your night with thoughts of me
When you linger in the remnant pain
Wholeness seeming so unfamiliar
Think of me and know that I am with you
Touching you through the shared tears of a gentle friend
Easing the pain
As the sunrise illuminates the desert sky
In that breathtaking glory, awaken your spirit
Think of our time together, all too brief, but ever brilliant
When you were certain of your destiny
Know that God created that moment in time, just for us.
Dearest Mommy, I am with you always
Saturday, February 7, 2009
Drayke's last day
January 26th was the most horrible day in my life and also the most amazing.
There was a part of me that knew that Drayke was no longer there as of Thursday night when he had that big seizure. His eyes were open and dilated and I could tell his spirit was just waiting for his body to give up. I prayed and begged and cried to please not to let this be happening. Not now. Not after having done so amazingly well after his trach was put in.
Monday I walked into his room and knew immediately that this was the day he was going to be leaving us.I could tell by watching the numbers on his monitor, how the saturations were slowly dropping. S, his brand new primary day nurse , who had just signed up on him the day he got sick, called Robert to let him know he needs to come in. Robert then called the room while he was in the van driving up begging me "I need to hear it from you" over and over again. I told him that it was time but he had to stay focused on driving, to calm down until he got to Vandy.
I was talking to Sherry from Parent Reach out and assorted others and was crying off & on but still somewhat calm. I had gone to the bathroom and as I came out Sherry and someone else came up to me to let me know that Robert had gotten to the hospital but had collapsed in the resource center. We went and I found Robert near inconsolable in an office. We cried together for what felt like an eternity until we decided it was time to go back to the room. Sherry, Rita, our social worker & Matt the NICU chaplain walked us to the employee elevator so we wouldnt have to deal with the general public.
Over the next couple of hours we got to hold Drayke, Robert and I taking turns. The hospital photographer was there to get pictures of Drayke for us and we should be getting a cd sometime in the future. While we were holding his some of his IV's were needing to be changed and I told the nurses not to. Let them run out on their own. Almost all of his doctors came by to say good bye. They were all in tears. Dr M & Dr G came by and told us what was going to start happening, what to expect when the end came. Dr M was beside herself. Dr P came by and was torn up. He is also the one that told us about tissue donation for research for pulmonary hypertension. Robert & I were all over that and told him absolutely, take what you need to get a cure for this. Drayke is here for a reason, this may very well be it. While Robert was holding him a gentleman from the organ donation team came by and we spent about thirty minutes going over paperwork. We later found out that his heart valves could not be used because of the strain of flu he had gotten.
Finally around 8:30 I told Robert that it was time. I could feel the end was near even though there were no monitors to tell me so. It was just a feeling. We had always told the staff that if Drayke dies I want him outside in the open air. So they jury rigged an O2 tank to his IV pole and we were preparing to go out. When we switched his vent over to the neo puffer there was a brief moment when he let out two short breaths. By the time I picked him up to go out the door his lips were already turning blue.
We walked out to the employee patio on the 4th floor and sat for a while. I looked up at Dr C and told her he was gone before we had gotten out there. She checked his heart and called the time of death at 8:55PM cst. I had her disconnect the IVs and the neo puffer. We cried and talked. S, K & K, his primary nurses were out there with us when Dr P came out. I could see in his face how torn up he was. He was crying and told us he should have done more, how amazing a little boy Drayke was and how much has already been learned from him. I told him how we have no complaints about the quality of care given to our son, everything was done plus some to keep him healthy enough to survive this long. I also told him how I have been inspried to get my nursing degree and to come work for Vanderbilt Children's. He told me that I would do great and how people like me are needed. He also told Robert & I how wonderful we were as parents. How we never failed to be with Drayke, how strong advocates for him we were.
We finally went inside and things were fairly surreal. We undressed Drayke pulled out hi g-tube & central line in his shoulder. We then gave him a nice warm bubble bath and lotioned him up in the lotion his fave nurse K gave him. While we were waiting for K to get the cart for doing prints & castings done I held Drayke in my arms the way I always wanted to, on my chest. I kept rubbing my chin on his head and was kissing him all over his face & arms. K got back and we then set about getting hand & feet prints as well as castings & hair clippings. It was almost silly, kinda like being punch drunk. We were all smiling & talking to each other & Drayke. The whole time I kept kissing and telling him how much his daddy and I love him. When we were done, we got him dressed in his outfit that Robert had gotten him, the golf shirt, knit vest & pants along with his fluffy white socks & shoes. My little man looked so handsome. We held him then let both K & K hold him for a bit. They said their goodbyes and kisses then we held him for a bit more.
The nurses told us they did not want us there when they had to take him to the morgue as they have to put him in a body bag to go downstairs, they did not want that to be our last image of him. We laid him on his bed, kissed him and told him again how much he is loved and went out of the room. We had to fight the urge to go running back to the room. Neither of us wanted to leave him but knew we had no choice.
As we were walking past the fish bowl (where the doctors hang out) Dr C came out with tears tears on her face, hugged us and told us how amazing we are as parents and reiterated what Dr Prince said about having learned so much from Drayke and us.
We got back to the Ronald McDonald House after 2AM and than is when I sent the post letting everyone know that Drayke is now in the care of the Goddess.
This was the last picture taken of Drayke while he was still alive, just moments before he passed.
There was a part of me that knew that Drayke was no longer there as of Thursday night when he had that big seizure. His eyes were open and dilated and I could tell his spirit was just waiting for his body to give up. I prayed and begged and cried to please not to let this be happening. Not now. Not after having done so amazingly well after his trach was put in.
Monday I walked into his room and knew immediately that this was the day he was going to be leaving us.I could tell by watching the numbers on his monitor, how the saturations were slowly dropping. S, his brand new primary day nurse , who had just signed up on him the day he got sick, called Robert to let him know he needs to come in. Robert then called the room while he was in the van driving up begging me "I need to hear it from you" over and over again. I told him that it was time but he had to stay focused on driving, to calm down until he got to Vandy.
I was talking to Sherry from Parent Reach out and assorted others and was crying off & on but still somewhat calm. I had gone to the bathroom and as I came out Sherry and someone else came up to me to let me know that Robert had gotten to the hospital but had collapsed in the resource center. We went and I found Robert near inconsolable in an office. We cried together for what felt like an eternity until we decided it was time to go back to the room. Sherry, Rita, our social worker & Matt the NICU chaplain walked us to the employee elevator so we wouldnt have to deal with the general public.
Over the next couple of hours we got to hold Drayke, Robert and I taking turns. The hospital photographer was there to get pictures of Drayke for us and we should be getting a cd sometime in the future. While we were holding his some of his IV's were needing to be changed and I told the nurses not to. Let them run out on their own. Almost all of his doctors came by to say good bye. They were all in tears. Dr M & Dr G came by and told us what was going to start happening, what to expect when the end came. Dr M was beside herself. Dr P came by and was torn up. He is also the one that told us about tissue donation for research for pulmonary hypertension. Robert & I were all over that and told him absolutely, take what you need to get a cure for this. Drayke is here for a reason, this may very well be it. While Robert was holding him a gentleman from the organ donation team came by and we spent about thirty minutes going over paperwork. We later found out that his heart valves could not be used because of the strain of flu he had gotten.
Finally around 8:30 I told Robert that it was time. I could feel the end was near even though there were no monitors to tell me so. It was just a feeling. We had always told the staff that if Drayke dies I want him outside in the open air. So they jury rigged an O2 tank to his IV pole and we were preparing to go out. When we switched his vent over to the neo puffer there was a brief moment when he let out two short breaths. By the time I picked him up to go out the door his lips were already turning blue.
We walked out to the employee patio on the 4th floor and sat for a while. I looked up at Dr C and told her he was gone before we had gotten out there. She checked his heart and called the time of death at 8:55PM cst. I had her disconnect the IVs and the neo puffer. We cried and talked. S, K & K, his primary nurses were out there with us when Dr P came out. I could see in his face how torn up he was. He was crying and told us he should have done more, how amazing a little boy Drayke was and how much has already been learned from him. I told him how we have no complaints about the quality of care given to our son, everything was done plus some to keep him healthy enough to survive this long. I also told him how I have been inspried to get my nursing degree and to come work for Vanderbilt Children's. He told me that I would do great and how people like me are needed. He also told Robert & I how wonderful we were as parents. How we never failed to be with Drayke, how strong advocates for him we were.
We finally went inside and things were fairly surreal. We undressed Drayke pulled out hi g-tube & central line in his shoulder. We then gave him a nice warm bubble bath and lotioned him up in the lotion his fave nurse K gave him. While we were waiting for K to get the cart for doing prints & castings done I held Drayke in my arms the way I always wanted to, on my chest. I kept rubbing my chin on his head and was kissing him all over his face & arms. K got back and we then set about getting hand & feet prints as well as castings & hair clippings. It was almost silly, kinda like being punch drunk. We were all smiling & talking to each other & Drayke. The whole time I kept kissing and telling him how much his daddy and I love him. When we were done, we got him dressed in his outfit that Robert had gotten him, the golf shirt, knit vest & pants along with his fluffy white socks & shoes. My little man looked so handsome. We held him then let both K & K hold him for a bit. They said their goodbyes and kisses then we held him for a bit more.
The nurses told us they did not want us there when they had to take him to the morgue as they have to put him in a body bag to go downstairs, they did not want that to be our last image of him. We laid him on his bed, kissed him and told him again how much he is loved and went out of the room. We had to fight the urge to go running back to the room. Neither of us wanted to leave him but knew we had no choice.
As we were walking past the fish bowl (where the doctors hang out) Dr C came out with tears tears on her face, hugged us and told us how amazing we are as parents and reiterated what Dr Prince said about having learned so much from Drayke and us.
We got back to the Ronald McDonald House after 2AM and than is when I sent the post letting everyone know that Drayke is now in the care of the Goddess.
This was the last picture taken of Drayke while he was still alive, just moments before he passed.
Tuesday, January 27, 2009
Info about Drayke's memorial service
The service will be held on Saturday, January 31st at 5PM in the Vanderbilt Childrens Hospital Chapel, 2200 Childrens Way Nashville, TN 37232.
Dad & I are having an open service. We would love to see Drayke's nurses, doctors, respiratory therapists from both Centennial & Vandy, family, friends, everyone who was touched by his life, both directly and online.
If you do come please park in the south garage off of either Childrens Way or Pierce Ave. Go into the hospital thru the 2nd floor garage skywalk. At the far end of the floor is the chapel.
We are asking that no flowers be sent. Rather, please make a donation to the Ronald McDonald House Nashville in Drayke's name. Their information is:
Ronald McDonald House Charities of Nashville, Tennessee Inc.
2144 Fairfax Ave
Nashville, Tennessee 37212
615-343-4000
http://www.rmhnashville.com/main_page/index.html
To make a donation in his name please give them this information:
Drayke King-Crom
1401 Hobby Ln
Lewisburg TN 37091
God knows times are tough now. If you cant donate please volunteer your time to the RMH or children's hospital in your area.
----------------------------------------------------------------------------------
I will be writing a post about our last day with Drayke. I dont want to ever forget all that happend, how amazing everyone was during the hardest moments of our lives. Some may find it disturbing but I need to do this, For Drayke, dad & myself.
Dad & I are having an open service. We would love to see Drayke's nurses, doctors, respiratory therapists from both Centennial & Vandy, family, friends, everyone who was touched by his life, both directly and online.
If you do come please park in the south garage off of either Childrens Way or Pierce Ave. Go into the hospital thru the 2nd floor garage skywalk. At the far end of the floor is the chapel.
We are asking that no flowers be sent. Rather, please make a donation to the Ronald McDonald House Nashville in Drayke's name. Their information is:
Ronald McDonald House Charities of Nashville, Tennessee Inc.
2144 Fairfax Ave
Nashville, Tennessee 37212
615-343-4000
http://www.rmhnashville.com/main_page/index.html
To make a donation in his name please give them this information:
Drayke King-Crom
1401 Hobby Ln
Lewisburg TN 37091
God knows times are tough now. If you cant donate please volunteer your time to the RMH or children's hospital in your area.
----------------------------------------------------------------------------------
I will be writing a post about our last day with Drayke. I dont want to ever forget all that happend, how amazing everyone was during the hardest moments of our lives. Some may find it disturbing but I need to do this, For Drayke, dad & myself.
274th day in the NICU
At 8:55PM central time, Drayke Alan Crom passed from this world. He was two days shy of his nine month birthday.
There is going to be a memorial service at Vanderbilt Childrens Hospital in the chapel on Saturday.
I will be posting more info after dad & I get some rest.
Monday, January 26, 2009
274th Day in the NICU
I am going to make this very brief. One side of Drayke's heart is not working and they other half is working poorly. They have done all they can do. I will update more but as of right now he is not going to make it through the night. We are taking him off life support tonight because he cannot recover from this. We had at least 6 doctors tell us this. Also Drayke is telling us this because he saturations are dropping slowly. Currently he is on 100% O2 and he is saturating at 60%. Our little bug has been through enough. He is not responding to anything. We will post when he passes. One thing we did bring up is tissue and organ donation. They made calls and they can use his heart valves and Dr Prince says they can use some tissue for research so that it may save lives in the future.
Sunday, January 25, 2009
273rd day in the NICU
Drayke is stable. His blood pressure is good and his heart rate is down to 140-150. Vent settings are high. O2 is at 100% with a PEEP of 10 & pressure support at 14. He is still puffy but not nearly as bad as yesterday. Urine output is great. Tomorrow he is getting an echo and we already know it is going to be terrible. A quick ultrasound last night showed that his right heart is hardly doing anything at all. So basically we are all the way back to where we were when we first got to Vandy. Drayke's hands & feet have finally started to warm up again so that means we are again getting good blood flow to his extremeties.
The doctors main concern at this time is his heart. With the function being so poor it could give out, but that was before he went back onto milrinone. That stuff worked miracles before. He has a slight galloping sound to his heart beat that he has had before. Dr M said today that they are hopeful since he has proven before that he is a very strong young man.
From all of his blood work it appears that the NEC is clearing up.
And all this was caused by catching the flu. Fortunately no other babies in our pod have it (there are 6 rooms). In a few days we are going to start weaning some meds to see what he can tolerate.
I am hoping he wakes up sometime soon. I miss his gorgeous eyes and wiggliness.
Thank you all for the prayers and well wishes.
We just called his nite nurse and Drayke is licking his lips and moving a little bit. She was very excited to see this given he has not moved for four days.
The doctors main concern at this time is his heart. With the function being so poor it could give out, but that was before he went back onto milrinone. That stuff worked miracles before. He has a slight galloping sound to his heart beat that he has had before. Dr M said today that they are hopeful since he has proven before that he is a very strong young man.
From all of his blood work it appears that the NEC is clearing up.
And all this was caused by catching the flu. Fortunately no other babies in our pod have it (there are 6 rooms). In a few days we are going to start weaning some meds to see what he can tolerate.
I am hoping he wakes up sometime soon. I miss his gorgeous eyes and wiggliness.
Thank you all for the prayers and well wishes.
We just called his nite nurse and Drayke is licking his lips and moving a little bit. She was very excited to see this given he has not moved for four days.
Saturday, January 24, 2009
272nd day in the NICU
Drayke is not doing well. Thursday night his temp kept fluxuating and his belly was distending. At 7:30PM he had another seizure that was a lot more pronounced that the previous one. He went from 43 to 50 on his girth within a few hours. An xray and 2 ultrasounds of his belly showed air was in the large veinous areas of his liver indicating bowel problems. He has NEC, Necrotizing enterocolitis .
This disease is extemely rare in infants his age. Also every other test known to man was run on him & found he has the flu. Gods knows how he contacted it but Dr M stated it is possible for NEC to happen due to the flu, again very rare but thats what we have.
Late Thursday night Drayke was taken to the OR for emergency exploratory surgery to remove any dead bowel. When they got in there he had some greyish areas but no black so they did not remove anything, hoping that the antibiotics he is now on will kill that infection. His nite primary nurse came in on her day off to be with dad & me and she stayed with Drayke until 5AM Friday morning. During and after the surgery his saturations were great until earlier today when the flu finally hit his respiratory system. He is at 100% O2 and they have increased his pressures. His belly is being vented from his Gtube plus one going down thru his nose. Feeds have stopped to rest the bowels so they can heal.
Due to the surgery he is receiving a lot of blood products and is receiving 10 separate IV medications. In the OR he got another central line put in that is having problems clotting off. Due to everything that is going on he is getting a bit puffy but not nearly as bad as he was in mid September.
The latest ultrasound is showing no air in his liver but his heart function is not good. The worst thing that could happen to a pulmonary hypertension baby is happening. He got sick with a virus. I wish is would have been staph or some other bacterial infection. Those you can kill with meds. Viral means he has to ride it out.
God knows what is going to happen. We are praying that today he hit the bottom. If he gets any worse I do not think he can survive. He was doing so great after the surgery last week and all that progress has been lost.
He turns nine months old in four days.
EDIT: I was just informed by a doctor at the hospital that Drayke is going into congestive heart failure. Heading out now.
Thursday, January 22, 2009
270th day in the NICU
Drayke is not feeling good today. Yesterday he was spiking a fever of around 101. We were thinking/hoping it was one of his normal "I have been weaned to quickly off of one of my meds" fevers and that it would resolve within 3 hours or so. We also noticed that his resting heart rate ws unusually high, hanging around 160. His normal resting rate is between 90-120. So this was of concern to me & dad.
As the day progressed the temp kept fluxuating between 101 to 103. His night nurse gave him at least two baths to cool him down.
This morning his temp is still between 102-103 and his resting heart rate is 200+. Dr M has put him on antibiotics until we see what the blood culture is doing. His white blood cell count is a little elevated but not enough to indicate much of anything. A urine sample was taken and they even thouroughly cleaned out his ears to get a good look. We are also going to get a throat swab done to check for strep and RSV.
While his day nurse was cleaning up his GJ tube site Drayke had a febrial seizure that lasted about a minute or so. The Fellow was just down the hall and I grabbed her to see what was happening. She then got Dr M and we discussed how this can happen with fevers. She said to Drayke "you get a free pass on this one" but if it happens again we will do an EEG and a lumbar punch to rule out meningitis.
We knew going in to surgery that there could be complications. We are sure that if this is some kind of infection we will knock it down fairly quickly.
If you would like to read more on febrile seizures please goto:
http://www.marchofdimes.com/pnhec/298_9543.asp
Wednesday, January 21, 2009
269th day in the NICU
It has been an amazing few days. Drayke's lungs have vastly improved. As in, for the first time, he has clear lungs. No signs of collapse or fluid. When you listen to him his RT's are asking "is this Drayke? There is no way this is the same boy, he sounds great!".
I have always had the feeling that if we get the trach things are going to change for the better and they have.
It has been cute watching him use his tongue to try to figure out where his tube has gone. He has started to make little popping noises with his lips.
Saturday & Sunday Little Man did not want to sleep. All he wanted to do was wiggle. Dr M was saying how its great that he doesnt seem like he is experiencing any discomfort but we cant have him moving around so much. They dont want the hole in his throat to get bigger so his morphine and ativan have been increased. So much so that when he does sleep he makes the vent do al the work.
Dr Y, Drayke's surgeon, came by yesterday and told Dr M & me that he sees no reason to have the baby snowed so the weaning process is beginning. Feeds are almost back up to where he was last weak.
The big change has been on his vent. O2 is 45. The pressure has been dropped from 25 to 22. PEEP from 10 to 8! These are the kinds of changes that will determine if he goes home with a vent or not. I am keeping in the back of my mind it may be possible. With all these changes his saturations are 98-100.
Next week we are going to start the weaning of the nitric again as well as get an updated echo. This one and the echo 3 weeks later is going to be really interesting. Is there going to be a change for the better? In my heart I believe there will be.
Almost forgot: his weight on Monday night was 15 pounds 6 ounces and today they are starting him on size 3 diapers.
Saturday, January 17, 2009
265th day in the NICU
What a wonderful day! We finally have a tape free baby boy!
Dad & I were at the hospital by 6:30 this morning. Niether of us slept a wink last night but we were both amazingly very awake. I was able to hold Drayke for almost an hour before Dr Y came in at 7:45 to go over the procedures. The anesthesiologist came in almost 30 minutes later to start his meds & finally everyone else came in to get him rolled out. Several nurses and respiratory therapists came by to wish him luck and hug us since everyone knows how long we have been waiting for this day and how high risk surgery is on a pulmonary hypertension baby. We were able to follow along until we got to the main doors into the OR.
We went back up to his room to wait. After about 10 minutes or so we got a call from Dr Y. Oh god, what has gone wrong? Turns out he wanted to tell us Drayke has a left groin hernia & do we want to go ahead & get that fixed. Sure, go ahead. Panic averted.
Dad worked and I looked at the news & watched an episode of Greys Anatomy. At taht point 3 hours had passed in what felt like no time at all. I got antsy & shut down my laptop telling dad I need to move. I looked over & saw Drayke's nurse on the phone. I stared at her her until she finally looked at me then she gave me the thumbs up. She was talking with the OR.
Drayke didnt just do ok during the surgery, he did awesome according to the OR nurse. He saturated at 95-100 during the entire surgery and they never had to raise his oxygen nor nitric. So, he has his trach, GJ tube, hernia repair & circumcision. The nissen was not done due to concern of potential problems that could have occurred in the OR & we all felt it was more important that he could feed rather than not potentially reflux.
Dr M, his attending this month, kept stopping in today, blown away by how well he is doing. Even his former day primary nurse came in to visit him. He is quite the talk of the floor. PH babies are just not supposed to be able to do this well. Now to make sure he stays calm he is under a LOT of sedation. LOTS of morphine & ativan. This will continue over the next 4 days then we will start the weaning process. After a week we will be changing out his trach tube and physical, speech & occupational therapy can finally really start to work with him. We have already planned to bring his swing in next week as well. His life is finally going to have some normality.
Drayke is loved, not only by his blood family, but the people at the hospital that take care of him every day, friend and co-workers and people who know of his story. Thank you so much for the overwhelming amount support & encouragement. We would not have been able to make it this far without you all.
Thursday, January 15, 2009
261st day in the NICU
The care conference went very well today. As in surprisingly well. It does make a difference when your attending specializes in pulmonary hypertension. She is amazed at how tough Drayke is and is projecting he may be home by his first birthday. She does not believe in using paralytics on babies so he will have a signifigant amount of pain meds for about 4 days. At least we wont shut down his bowels like what happened while on the vecuronium. Dr M also mentioned how they are keeping Drayke on tight calorie control. She does not want him to get too chubby because that would cause more of a strain on his lungs & heart.
So we are a go for Friday. He officially goes on "the board" tomorrow and that is when we will find out the time.
One of the surgeons came in and told us how the procedure will go. He was talkng about how the G tube and nissen will be done as an "open" procedure, not laproscopicly(sp?). I asked him how large the incision will be, expecting a couple of inches, which on a baby's belly would be huge. He advsied it is going to be maybe 2-3 centimeters. He will hardly have any scarring at all.
All in all the surgery should be no longer than 3 hours. Dad & I are counting down until Friday.
On a different note: I made Drayke 2 receiving blankets from fabric purchased at Walmart a few months ago (see Day 230 to view the fabric, http://draykecrom.blogspot.com/2008/12/230th-day-in-nicu.html). I can not find them anywhere now. They have been lost either at the hospital, on a transport shuttle or here at the RMC. Has anyone seen this fabric anywhere? Our Walmart no longer sells fabric and I am REALLY wanting to get more of this fabric. It is called zen monkey, the base color is purple/lilac/lavender. Thanks for any help tracking this down.
So we are a go for Friday. He officially goes on "the board" tomorrow and that is when we will find out the time.
One of the surgeons came in and told us how the procedure will go. He was talkng about how the G tube and nissen will be done as an "open" procedure, not laproscopicly(sp?). I asked him how large the incision will be, expecting a couple of inches, which on a baby's belly would be huge. He advsied it is going to be maybe 2-3 centimeters. He will hardly have any scarring at all.
All in all the surgery should be no longer than 3 hours. Dad & I are counting down until Friday.
On a different note: I made Drayke 2 receiving blankets from fabric purchased at Walmart a few months ago (see Day 230 to view the fabric, http://draykecrom.blogspot.com/2008/12/230th-day-in-nicu.html). I can not find them anywhere now. They have been lost either at the hospital, on a transport shuttle or here at the RMC. Has anyone seen this fabric anywhere? Our Walmart no longer sells fabric and I am REALLY wanting to get more of this fabric. It is called zen monkey, the base color is purple/lilac/lavender. Thanks for any help tracking this down.
Tuesday, January 13, 2009
260th Day in the NICU
Big things are happening this week. Drayke is scheduled for surgery this coming Friday!
The procedures being are: tracheostomy,Gastrostomy/Jejunostomy and a Nissen fundoplication. In other words his vent is going to be connected at the throat rather than having that infernal tube thru his mouth. His feedings will be going thru a tube that has a port on his belly. He WILL be able to feed thru his mouth but it will take time to get him used to actually feeding. The Nissen is for his reflux.
Drayke had an upper GI done yesterday and he does show signs of reflux. The doctors are all wanting to protect his airway at all costs. A serious aspiration could cause a non reversable downward slide. As much as I didnt want to do this procedure it is necessary.
Wednesday is going to be a big care conference with his doctors and the surgeons so we all are on board with what the next few weeks hold in store for us. This can bring us a step closer to coming home. Drayke does have a long road in front of him in the hospital but this is the first significant step.
He will be fairly snowed for about 4-5 days to make sure he does not pull out his trach. It will seal back up almost immediately during that first week. But after that we can start feeding him with a bottle or even solids. He can have a bath in a tub. He can use his bumbo chair. Just so many things are soon to be available to him.
I have been getting weepy by the overwhelming feelings. I am terrified, ecstatic, just a whole gambit of emotions. I will finally be able to pick my son up for the first time in months without having to have a nurse helping. He will no longer have to go thru getting tape put all over his face to keep the vent in place. He can start having the mobility an average infant should have.
Everything in his little world is changing.
The procedures being are: tracheostomy,Gastrostomy/Jejunostomy and a Nissen fundoplication. In other words his vent is going to be connected at the throat rather than having that infernal tube thru his mouth. His feedings will be going thru a tube that has a port on his belly. He WILL be able to feed thru his mouth but it will take time to get him used to actually feeding. The Nissen is for his reflux.
Drayke had an upper GI done yesterday and he does show signs of reflux. The doctors are all wanting to protect his airway at all costs. A serious aspiration could cause a non reversable downward slide. As much as I didnt want to do this procedure it is necessary.
Wednesday is going to be a big care conference with his doctors and the surgeons so we all are on board with what the next few weeks hold in store for us. This can bring us a step closer to coming home. Drayke does have a long road in front of him in the hospital but this is the first significant step.
He will be fairly snowed for about 4-5 days to make sure he does not pull out his trach. It will seal back up almost immediately during that first week. But after that we can start feeding him with a bottle or even solids. He can have a bath in a tub. He can use his bumbo chair. Just so many things are soon to be available to him.
I have been getting weepy by the overwhelming feelings. I am terrified, ecstatic, just a whole gambit of emotions. I will finally be able to pick my son up for the first time in months without having to have a nurse helping. He will no longer have to go thru getting tape put all over his face to keep the vent in place. He can start having the mobility an average infant should have.
Everything in his little world is changing.
Thursday, January 8, 2009
255th Day in the NICU
Tuesday & Wednesday were very stressful days. Drayke's saturations were hanging out in the high 70s to mid 80s with his resting heart rate around 140. Much higher than his norm during the month of December. All I could think was "are we going to have a repeat November, being a bad month?"
Wednesday he had a new echo done and the results came back fairly quickly. The cardiologist said it was worse that his five previous echos. WTF? Did we go that far backwards in less than three weeks? is nitric oxde was put back up to 20 PPM & the ativan & methadone were moved back to Q6 and adjusted for his weight. I was weepy for the rest of the day & could not get to sleep until 7:30 this morning.
When I got to the hospital today his nurse paged Drayke's attending because she wanted to talk to me. Akk. Nerves on edge even more. She called in a few minutes and we spoke for almost 10 minutes. Dr M, little man's cardiologist went over the echo himself and assured the attending it was not as bad as the other doc interpretted it. We have gone backwards a little, definately not all the way back to October. The attending said we are going to work on the weaning again a bit slower than before. She is however wanting the trach to be done within the next week or so. The surgical team is on board with doing both the trach & g-tube at the same time. His cardiologist is ok with the surgery as long as Drayke is clinically stable.
Today, Drayke has been saturating back in the high 90's and his heart rate is lower now. Much more like my good little boy. I think I can breath again.
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Wednesday he had a new echo done and the results came back fairly quickly. The cardiologist said it was worse that his five previous echos. WTF? Did we go that far backwards in less than three weeks? is nitric oxde was put back up to 20 PPM & the ativan & methadone were moved back to Q6 and adjusted for his weight. I was weepy for the rest of the day & could not get to sleep until 7:30 this morning.
When I got to the hospital today his nurse paged Drayke's attending because she wanted to talk to me. Akk. Nerves on edge even more. She called in a few minutes and we spoke for almost 10 minutes. Dr M, little man's cardiologist went over the echo himself and assured the attending it was not as bad as the other doc interpretted it. We have gone backwards a little, definately not all the way back to October. The attending said we are going to work on the weaning again a bit slower than before. She is however wanting the trach to be done within the next week or so. The surgical team is on board with doing both the trach & g-tube at the same time. His cardiologist is ok with the surgery as long as Drayke is clinically stable.
Today, Drayke has been saturating back in the high 90's and his heart rate is lower now. Much more like my good little boy. I think I can breath again.
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Tuesday, January 6, 2009
253rd Day in the NICU
Sorry I have been lax on keeping everything updated. I havent even updated my own personal journal.
New Years Eve was spent at the hospital. The charge nurse passed out sparkling grape juice of which Drayke partook (is that even a word?) of. Well, he had a tiny taste on his lip because he was passed out asleep. She also made a sign for him that said "Please help to Get Drayke a Trach Foundation, Please sign below". Dad & I laughed our backsides off and took pics of it. We also said how some doctor is gonna come by and take it down because they have no sense of humor. Sure as anything, the next morning it was gone. The charge nurse is going to make another one for us to keep.
Last night was his once a week weigh in and measure. My little man is not so little any more. 14 pounds 7 ounces and 23.75 inches long.
Dad & I spoke to his new attending last night and she is really wanting to get the trach moving along so she is switching his vent to pressure control rather than volume control. Over the weekend the nitric was dropped from 8 to 5.
So far he is saturating in the 80s for the most part. Occasionally he is popping up to the 90s. After talking with his night nurse we are figuring he is going thru some withdrawls due to the change in his methodone from Q6 to Q8. As of 10pm tonight they have put him back to Q6.
I gave Drayke a bath all by myself. That is no easy feat with everything that his is attached to, but I managed it!
New Years Eve was spent at the hospital. The charge nurse passed out sparkling grape juice of which Drayke partook (is that even a word?) of. Well, he had a tiny taste on his lip because he was passed out asleep. She also made a sign for him that said "Please help to Get Drayke a Trach Foundation, Please sign below". Dad & I laughed our backsides off and took pics of it. We also said how some doctor is gonna come by and take it down because they have no sense of humor. Sure as anything, the next morning it was gone. The charge nurse is going to make another one for us to keep.
Last night was his once a week weigh in and measure. My little man is not so little any more. 14 pounds 7 ounces and 23.75 inches long.
Dad & I spoke to his new attending last night and she is really wanting to get the trach moving along so she is switching his vent to pressure control rather than volume control. Over the weekend the nitric was dropped from 8 to 5.
So far he is saturating in the 80s for the most part. Occasionally he is popping up to the 90s. After talking with his night nurse we are figuring he is going thru some withdrawls due to the change in his methodone from Q6 to Q8. As of 10pm tonight they have put him back to Q6.
I gave Drayke a bath all by myself. That is no easy feat with everything that his is attached to, but I managed it!
Tuesday, December 30, 2008
246th Day in the NICU
Drayke turned eight months old on Sunday. His night nurse left the cutest note on his dry erase board. She likes calling him Draykie-poo!
Dr P has been on for the 2 days and is itching to get Drayke's trach surgery scheduled. He is having some bad issues with his gag reflex and has been spitting up a lot over the last few days. Not formula, just LOTS of phlem.
Sunday, Dr P contacted Dr M, Drayke's cardiologist, and was told that the latest echo shows a dramatic improvement. His most recent x-ray looks great except for a tad of atalectisis/ small collapse in his upper right lobe. Other than that the lungs look great.
Drayke has recently, within the last few weeks, discovered his fingers. He is now pretty much ignoring his tube and playing with his fingers and feeling his stuffed animals. It is so cute watching him play with them and discovering all the new sensations. Mind you, he is still in love with his mobile. In the vid he is watching it and is all excited . My happy wiggly lil man.
Dr P has been on for the 2 days and is itching to get Drayke's trach surgery scheduled. He is having some bad issues with his gag reflex and has been spitting up a lot over the last few days. Not formula, just LOTS of phlem.
Sunday, Dr P contacted Dr M, Drayke's cardiologist, and was told that the latest echo shows a dramatic improvement. His most recent x-ray looks great except for a tad of atalectisis/ small collapse in his upper right lobe. Other than that the lungs look great.
Drayke has recently, within the last few weeks, discovered his fingers. He is now pretty much ignoring his tube and playing with his fingers and feeling his stuffed animals. It is so cute watching him play with them and discovering all the new sensations. Mind you, he is still in love with his mobile. In the vid he is watching it and is all excited . My happy wiggly lil man.
Wednesday, December 24, 2008
240th Day in the NICU
Today little man had a few desaturation episodes and his heart rate dropped but they think it is because of crud in his tube. Mom got to hold him today and she had a great time. They are going to do a blood workup just in case. You never know and better safe than sorry. Mom will be giving our 3rd shift Primary nurse (Kat) her gift tonight. I hope she enjoys it. Im hoping Christmas day that our day shift Primary (Pam) will be there to get her gift. Little man has pooped so many times today it is not even funny.
He also got a $50 gift card to Target from Faith Hill and Tim McGraw. Lucky little man. They did not see the little ones but still. Kat also gave him a present last night. Socks that says baby first Christmas and some other items. One of Draykes kinda related grandmas gave him 2 gifts. Unfortunately one was opened because there was no name on it but it is a 9 month old outfit that I hope will fit because it is cute.
All his sisters will get to see him tomorrow so that will be a great Christmas gift to them as well. I have the professional photo now scanned and it is below.
Tuesday, December 23, 2008
239th Day in the NICU
This has been a VERY busy week for Drayke. Dr M was determined little man was going to be off his IV's and sure as anything the morphine was discontinued on Friday, 12/19 and the Ativan IV was stopped today and will now receive scheduled doses every eight hours.
On Friday he also got a new ET tube. The new tube is the same size but has a balloon that can be inflated if needed. Just that little bit of additional diameter has plugged up the air leak he had. His pressures are looking so much better now. The ENT is supposed to be coming by again this week to re-evaluate getting the trach.
He had his first physical therapy session at this hospital and was a good boy.
Drayke weighs 13 pounds 7 ounces. He has gone from a linebacker to a fullback!
Sunday, 12/21, Santa & Mrs Clause visited the NICU and a wonderful picture was taken by a professional photographer. Once we have a chance we are going to scan it.
Today was a big day at the hopspital. George Jones, the country singer, came visiting with literally a boat full of gifts. Also, Billy Ray Cyrus and his daughter Miley performed in the hospital theatre and signed autographs for patients & parents. It turns out he does a lot of work for the hospital.
So far, December has been great!
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On Friday he also got a new ET tube. The new tube is the same size but has a balloon that can be inflated if needed. Just that little bit of additional diameter has plugged up the air leak he had. His pressures are looking so much better now. The ENT is supposed to be coming by again this week to re-evaluate getting the trach.
He had his first physical therapy session at this hospital and was a good boy.
Drayke weighs 13 pounds 7 ounces. He has gone from a linebacker to a fullback!
Sunday, 12/21, Santa & Mrs Clause visited the NICU and a wonderful picture was taken by a professional photographer. Once we have a chance we are going to scan it.
Today was a big day at the hopspital. George Jones, the country singer, came visiting with literally a boat full of gifts. Also, Billy Ray Cyrus and his daughter Miley performed in the hospital theatre and signed autographs for patients & parents. It turns out he does a lot of work for the hospital.
So far, December has been great!
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Friday, December 19, 2008
235th Day in The NICU
This was in today's Marshall County Tribune. His picture was in the printed version. This is the link to the article: http://www.marshalltribune.com/story/1487061.html
Marshall infant mortality rate highest in stateFriday, December 19, 2008By Karen Hall, Staff Writer
Marshall County's infant-mortality rate is more than three times the national average. It's been almost eight months since Drayke Alan Crom was born. And he appears to be winning his fight against becoming just another infant mortality statistic.
That's the good news.
The bad news is that Marshall County has the highest rate of infant mortality in Tennessee, according to the most recent 2006 figures.
Tennessee's infant mortality rate is among the highest in the nation, as reported this week by the daily paper in Nashville. That publication reported Marshall County residents registered the birth of 402 babies in the calendar year 2006, and nine of them didn't live to celebrate their first birthday.
That works out to 22.4 deaths per 1,000 births. It's a rate more than three times the national average (6.3) and worse than Nicaragua or Tunisia, according to the 2006 revision of the United Nations World Population Prospects report.
More statistics are coming early next year. Infant mortality statistics are figured by the number of babies who don't live to see their first birthday.
About Drayke
Drayke was born 12 weeks premature on April 28, weighing 1 pound, 4.7 ounces and measuring 13 inches long. Since birth, he's been in a neonatal intensive care unit - first at Centennial Medical Center and now at Vanderbilt University Medical Center.
"He's the oldest baby in the NICU right now," says his mother, Lorrie King, 45.
However, she's heard of babies who stayed there for a year or more.
King has spent a lot of time staying at the Ronald McDonald House, which, among other services, provides a home away from home for families of critically ill children at Nashville hospitals.
Most of the people at the house are there because of premature babies, King says.
She doesn't see a pattern in anything that might explain why babies are born premature. The cause of infant deaths suffered among Marshall County couples seems just as murky.
"They're not kids, not low income - just normal middle-class people who have tried to do everything right," King says of her fellow residents at Ronald McDonald House.
"There's not a person there who wouldn't do everything possible for their child," she adds.
King has seen many deaths in the course of Drayke's stay in an NICU. When a baby is known to be losing the fight for life, she says, the staff puts a white sticker on the door of the infant's room. A blue teardrop is printed on the white sticker.
"Your heart just sinks because you know what's happening," she says.
A local mystery
There are no easy answers to the high local infant mortality rate.
Cause of death remains confidential, so it's practically impossible to determine which of the common causes cited by health experts - obesity, poverty, diabetes, sexually transmitted diseases, teenage pregnancies, violence, stress and smoking - apply to Marshall County's babies.
"It doesn't surprise me at all," said Steve Calahan, assistant director of the Marshall County Emergency Medical Service, when he was told about the statistics.
He's acknowledged factors such as a poor education and low incomes lead to poor results for mothers and their babies.
"Every child is our future and women are the gatekeepers of children's health," said Anna Childress who chairs the Marshall County Health Council.
She's also a certified La Leche League leader, able to help new mothers breastfeed their babies. La Leche is a nonprofit, nonsectarian organization to provide education, information, mother-to-mother support, and encouragement to women who want to breastfeed.
"If babies got to the breast in the first hour, it would save one million babies worldwide," Childress says, quoting a maxim she knows by heart. "Good healthcare starts with breastfeeding."
The good fight
Drayke's parents, Lorrie King and Robert Crom, have no idea when their son may come home, although she says, "It's looking pretty good."
The baby's doctor wants to have Drayke weaned from intravenous sedation by Christmas. Then he has to learn to breathe on his own, without the ventilator, and to swallow, so that he can be given a bottle.
"He hasn't given up," King says. "This little boy has a purpose in life. We just don't know what it is yet."
Drayke's mother maintains an Internet blog on her son's progress. Visit draykecrom.blogspot.com.
Marshall infant mortality rate highest in stateFriday, December 19, 2008By Karen Hall, Staff Writer
Marshall County's infant-mortality rate is more than three times the national average. It's been almost eight months since Drayke Alan Crom was born. And he appears to be winning his fight against becoming just another infant mortality statistic.
That's the good news.
The bad news is that Marshall County has the highest rate of infant mortality in Tennessee, according to the most recent 2006 figures.
Tennessee's infant mortality rate is among the highest in the nation, as reported this week by the daily paper in Nashville. That publication reported Marshall County residents registered the birth of 402 babies in the calendar year 2006, and nine of them didn't live to celebrate their first birthday.
That works out to 22.4 deaths per 1,000 births. It's a rate more than three times the national average (6.3) and worse than Nicaragua or Tunisia, according to the 2006 revision of the United Nations World Population Prospects report.
More statistics are coming early next year. Infant mortality statistics are figured by the number of babies who don't live to see their first birthday.
About Drayke
Drayke was born 12 weeks premature on April 28, weighing 1 pound, 4.7 ounces and measuring 13 inches long. Since birth, he's been in a neonatal intensive care unit - first at Centennial Medical Center and now at Vanderbilt University Medical Center.
"He's the oldest baby in the NICU right now," says his mother, Lorrie King, 45.
However, she's heard of babies who stayed there for a year or more.
King has spent a lot of time staying at the Ronald McDonald House, which, among other services, provides a home away from home for families of critically ill children at Nashville hospitals.
Most of the people at the house are there because of premature babies, King says.
She doesn't see a pattern in anything that might explain why babies are born premature. The cause of infant deaths suffered among Marshall County couples seems just as murky.
"They're not kids, not low income - just normal middle-class people who have tried to do everything right," King says of her fellow residents at Ronald McDonald House.
"There's not a person there who wouldn't do everything possible for their child," she adds.
King has seen many deaths in the course of Drayke's stay in an NICU. When a baby is known to be losing the fight for life, she says, the staff puts a white sticker on the door of the infant's room. A blue teardrop is printed on the white sticker.
"Your heart just sinks because you know what's happening," she says.
A local mystery
There are no easy answers to the high local infant mortality rate.
Cause of death remains confidential, so it's practically impossible to determine which of the common causes cited by health experts - obesity, poverty, diabetes, sexually transmitted diseases, teenage pregnancies, violence, stress and smoking - apply to Marshall County's babies.
"It doesn't surprise me at all," said Steve Calahan, assistant director of the Marshall County Emergency Medical Service, when he was told about the statistics.
He's acknowledged factors such as a poor education and low incomes lead to poor results for mothers and their babies.
"Every child is our future and women are the gatekeepers of children's health," said Anna Childress who chairs the Marshall County Health Council.
She's also a certified La Leche League leader, able to help new mothers breastfeed their babies. La Leche is a nonprofit, nonsectarian organization to provide education, information, mother-to-mother support, and encouragement to women who want to breastfeed.
"If babies got to the breast in the first hour, it would save one million babies worldwide," Childress says, quoting a maxim she knows by heart. "Good healthcare starts with breastfeeding."
The good fight
Drayke's parents, Lorrie King and Robert Crom, have no idea when their son may come home, although she says, "It's looking pretty good."
The baby's doctor wants to have Drayke weaned from intravenous sedation by Christmas. Then he has to learn to breathe on his own, without the ventilator, and to swallow, so that he can be given a bottle.
"He hasn't given up," King says. "This little boy has a purpose in life. We just don't know what it is yet."
Drayke's mother maintains an Internet blog on her son's progress. Visit draykecrom.blogspot.com.
Sunday, December 14, 2008
230th Day in the NICU
We have reached a goal this week. Drayke is now below 60% on his oxygen. We are finally below the range where O2 causes damage. His PEEP was dropped this week from 12 to 11. and his morphine is down to .03. He has been saturating consistantly in the high 90s-100. Still sleeping thru the night and not needing PRNs. This has been a great week.
The biggest news is from today. Drayke is now 13 pounds! Where has my little peanut gone?
This week Drayke discovered bringing both of his hands to his mouth and really working on trying to suck his thumb. He succeeded a few times. The darn vent tube just keeps getting in the way. He also likes to rub the side of his head with his hands. This means he is learning how to self comfort. YAY!!!!
The biggest news is from today. Drayke is now 13 pounds! Where has my little peanut gone?
This week Drayke discovered bringing both of his hands to his mouth and really working on trying to suck his thumb. He succeeded a few times. The darn vent tube just keeps getting in the way. He also likes to rub the side of his head with his hands. This means he is learning how to self comfort. YAY!!!!
Saturday, December 6, 2008
222nd Day in the NICU
Dr M is so pleased with Drayke this week. He has continued to wean him on his Milrinone and his O2 is now at 66%, nitric is at 10. Little man does have an infection but he is not acting sick at all. Doc changed him over to Ampicillin and we are thinking we have caught it in time to prevent the bug from getting bad.
Because of this infection and the blood draws that are being done with the broviac there is a strong probability that the line may be infected. Dr M does not want to have to pull the line because he is still needing a higher volume line for his meds. He has done some research and has found that an infusion of 70% alcohol going thru the line at a slow rate will kill bacteria in the line. We are talking only 1cc. He is doing more research on this. I told him that I am just wanting to make sure there are no nasty side effects since the end of the line termintes just outside of his heart. Last thing we need to do is give Drayke a heart attack or something.
Yesterday we wore Drayke out by giving him a nice soapy bath which he loved. While I was washing his back I really noticed how we have to start working on his head shape. Having a bit of toaster head (kinda square) is normal in the NICU. The problem is the back of his head is a bit wedge shaped. He is not laying on the back of his head enough, mostly he sleeps with it to one side or another. So working with the nurses we are going to try to get this as corrected as possible. I dressed him for the first time since Halloween and held him for an hour. Tried something a bit different though. Rather than having him laying in my arms I had him in a seated position facing away from me with his head on my chest. He promptly fell asleep but the nurse was pleased with this change in position. He does need to be sitting up more.
When we put him back to bed he needing to get a new peripheral blood draw which made Drayke very grumpy but he never once desatted. Later that evening I was talking to his 2nd shift nurse and mentioned how I am wanting to try to get him in his bouncy seat. She said ok, lets do it now. The last time we tried it didnt go so well because he was starting to get sick from that last staph infection. This time it was an absolute success. He was in the seat for a little more than 2 hours and was just a happy lil camper. I am going to try to make this a once a day thing.
Oh, one thing I almost forgot. Drayke has not needed a PRN (sedation other than his scheduled meds) for more than 48 hours! This is huge. When he does get upset he is no longer dropping his saturations. He is staying in the 90s.
This has been a good week. I have decorated his hospital room a bit with some gel window clings, small yule tree and garland on his crib. His Christmas outfit is all washed and ready for when Santa comes to the hospital later this month.
Because of this infection and the blood draws that are being done with the broviac there is a strong probability that the line may be infected. Dr M does not want to have to pull the line because he is still needing a higher volume line for his meds. He has done some research and has found that an infusion of 70% alcohol going thru the line at a slow rate will kill bacteria in the line. We are talking only 1cc. He is doing more research on this. I told him that I am just wanting to make sure there are no nasty side effects since the end of the line termintes just outside of his heart. Last thing we need to do is give Drayke a heart attack or something.
Yesterday we wore Drayke out by giving him a nice soapy bath which he loved. While I was washing his back I really noticed how we have to start working on his head shape. Having a bit of toaster head (kinda square) is normal in the NICU. The problem is the back of his head is a bit wedge shaped. He is not laying on the back of his head enough, mostly he sleeps with it to one side or another. So working with the nurses we are going to try to get this as corrected as possible. I dressed him for the first time since Halloween and held him for an hour. Tried something a bit different though. Rather than having him laying in my arms I had him in a seated position facing away from me with his head on my chest. He promptly fell asleep but the nurse was pleased with this change in position. He does need to be sitting up more.
When we put him back to bed he needing to get a new peripheral blood draw which made Drayke very grumpy but he never once desatted. Later that evening I was talking to his 2nd shift nurse and mentioned how I am wanting to try to get him in his bouncy seat. She said ok, lets do it now. The last time we tried it didnt go so well because he was starting to get sick from that last staph infection. This time it was an absolute success. He was in the seat for a little more than 2 hours and was just a happy lil camper. I am going to try to make this a once a day thing.
Oh, one thing I almost forgot. Drayke has not needed a PRN (sedation other than his scheduled meds) for more than 48 hours! This is huge. When he does get upset he is no longer dropping his saturations. He is staying in the 90s.
This has been a good week. I have decorated his hospital room a bit with some gel window clings, small yule tree and garland on his crib. His Christmas outfit is all washed and ready for when Santa comes to the hospital later this month.
Tuesday, December 2, 2008
218th Day in the NICU
Dad & I met Drayke's new attending physician yesterday. He is guardedly optimistic. He likes our attitude about Drayke's care and how we are well aware of potential outcomes for our son. We both liked him.
Dr M is changing the vent settings to be more PICU settings rather than NICU. Drayke is old enough to be a pediatric patient and a lot of the time he is still being treated as a micro preemie even though he is 11 pounds 4.3 ounces. Time for a change in the mindset. Fewer breaths with a higher, deeper volume. He is responding very well to the new settings.
Last night I decided to pop over to the hospital after going to Centennial for a bit. Our friend from there was rooming in & getting discharged in the morning. Congrats Dax!!!
Anyway, I get to Drayke's room to see his heart rate at 200+ (he is normally in the 100-135 range)but his O2 saturations were still in the 90's. WTF? I asked the nurse what's going on & she mentioned how he has not been comfortable since she got there at 7PM. I touched his head and he was hot. Extremely hot. I took his temperature three times because I did not believe what I was seeing. 104.6 degrees! I flipped out & told the nurse she needs to call the doctor now to figure out what is going on with my son. I called dad, who was asleep at the RMH, to get over to the hospital now. While the nurses were getting draws for assorted cultures, I had a cool wet washcloth on his head. Within an hour he was back down to normal, and this is without any Tylenol in him.
So, in the space of three hours he went from normal to a major temp spike then back to normal again. The nurse suggested it could be a symptom of withdrawl from the morphine. Dad told Drayke that he needs to stop scaring mama like this and little man smiled at his father!
This morning we are showing growth in both the peripheral & broviac blood draws. Looks to possibly be another staph or strep infection. His PICC line has been pulled because it has been repaired twice so it could a source of infection. Drayke is now on another 7 day course of antibiotics.
The good thing is he is not acting or statting like he is sick. His numbers are looking great. Dr M has upped his morphine .02 to see if withdrawl was the cause of last nights episode. He is making no other med or vent changes until Wednesday. His RT Sherry wants to knock his nitric to 10 and his O2 to 70 but the doc said no, lets give him a day of being left alone.
On an extermely sad note, a little girl died today in our pod. She was born on Friday, full term. They tried the ECMO to help cleanse the ammonia out of her blood but it ended up causing a grade 4 bleed in her brain. I have been on the edge of weepy all day because even though they arent your children you are always afraid this could be you next. We finally spoke to her mother last night and hugged her as she cried.
Dr M is changing the vent settings to be more PICU settings rather than NICU. Drayke is old enough to be a pediatric patient and a lot of the time he is still being treated as a micro preemie even though he is 11 pounds 4.3 ounces. Time for a change in the mindset. Fewer breaths with a higher, deeper volume. He is responding very well to the new settings.
Last night I decided to pop over to the hospital after going to Centennial for a bit. Our friend from there was rooming in & getting discharged in the morning. Congrats Dax!!!
Anyway, I get to Drayke's room to see his heart rate at 200+ (he is normally in the 100-135 range)but his O2 saturations were still in the 90's. WTF? I asked the nurse what's going on & she mentioned how he has not been comfortable since she got there at 7PM. I touched his head and he was hot. Extremely hot. I took his temperature three times because I did not believe what I was seeing. 104.6 degrees! I flipped out & told the nurse she needs to call the doctor now to figure out what is going on with my son. I called dad, who was asleep at the RMH, to get over to the hospital now. While the nurses were getting draws for assorted cultures, I had a cool wet washcloth on his head. Within an hour he was back down to normal, and this is without any Tylenol in him.
So, in the space of three hours he went from normal to a major temp spike then back to normal again. The nurse suggested it could be a symptom of withdrawl from the morphine. Dad told Drayke that he needs to stop scaring mama like this and little man smiled at his father!
This morning we are showing growth in both the peripheral & broviac blood draws. Looks to possibly be another staph or strep infection. His PICC line has been pulled because it has been repaired twice so it could a source of infection. Drayke is now on another 7 day course of antibiotics.
The good thing is he is not acting or statting like he is sick. His numbers are looking great. Dr M has upped his morphine .02 to see if withdrawl was the cause of last nights episode. He is making no other med or vent changes until Wednesday. His RT Sherry wants to knock his nitric to 10 and his O2 to 70 but the doc said no, lets give him a day of being left alone.
On an extermely sad note, a little girl died today in our pod. She was born on Friday, full term. They tried the ECMO to help cleanse the ammonia out of her blood but it ended up causing a grade 4 bleed in her brain. I have been on the edge of weepy all day because even though they arent your children you are always afraid this could be you next. We finally spoke to her mother last night and hugged her as she cried.
Sunday, November 30, 2008
216th Day in the NICU
Dr R is really pushing Drayke this weekend. He decided to go ahead & start dropping the nitric. Over the last 24 hours it has gone from 20 to 14. As a general rule doctors like to knock it down a point every day or so. Draykes oxygen is down to 76 and morphine is now at .06! He is saturating in the 90s pretty consistantly today so most likely they will drop his O2 down another 2% to 74% later tonight.
Drayke's feeds have been raised to 13cc's/hour and his lipids are being stopped. That means if he PICC line goes it is not a problem, we just use the broviac for all his meds. He is also getting weighed tonight so we are going to see how much he has dropped since taking the Miralax. Oh, that is also getting cut back to every other day now since his belly is nice & soft & everything is moving the way it needs to.
Dad & I saw the baby's cardiologist yesterday and we discussed what has been weaned so far and he is pleased. He s not overly concerned about the echo scheduled for tomorrow. The numbers Drayke is showing are speaking volumes in that he is tolerating the weaning very well.
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Drayke's feeds have been raised to 13cc's/hour and his lipids are being stopped. That means if he PICC line goes it is not a problem, we just use the broviac for all his meds. He is also getting weighed tonight so we are going to see how much he has dropped since taking the Miralax. Oh, that is also getting cut back to every other day now since his belly is nice & soft & everything is moving the way it needs to.
Dad & I saw the baby's cardiologist yesterday and we discussed what has been weaned so far and he is pleased. He s not overly concerned about the echo scheduled for tomorrow. The numbers Drayke is showing are speaking volumes in that he is tolerating the weaning very well.
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Friday, November 28, 2008
214th Day in the NICU
Today Drayke is 7 months old.
It has been a good week and a half since starting his weaning on the vent. Today Dr R knocked him down to 80% & his morphine is at .1, half of what he was on at the time of the big meeting. Dr R is wanting him weaned to 70% by Sunday so we can start weaning the nitric.
His nurse today was being very negative on the phone this morning. So much so that when I hung up I had a bit of a meltdown. I called dad and he figures the nurse was just having a bad day. Dont try to tell me weaning 20% off his O2 and 50% off his morphine in 9 days is not an improvement! Grr.
We get a new attending Monday and a care conference is being called for after Drayke gets his new echo done on Monday. We need to bring the new doc up to speed and make sure we dont backslide.
It has been a good week and a half since starting his weaning on the vent. Today Dr R knocked him down to 80% & his morphine is at .1, half of what he was on at the time of the big meeting. Dr R is wanting him weaned to 70% by Sunday so we can start weaning the nitric.
His nurse today was being very negative on the phone this morning. So much so that when I hung up I had a bit of a meltdown. I called dad and he figures the nurse was just having a bad day. Dont try to tell me weaning 20% off his O2 and 50% off his morphine in 9 days is not an improvement! Grr.
We get a new attending Monday and a care conference is being called for after Drayke gets his new echo done on Monday. We need to bring the new doc up to speed and make sure we dont backslide.
Monday, November 24, 2008
210th Day in the NICU
Drayke has been weaned down to 90% on his oxygen and still saturating in the high 90s-100. They have only weaned him .01 on his morphine and everything else is the same.
He was weighed Sunday morning. Since he had not pooped in more than a week I know this will be dropping. He weighed 11 pounds 10 ounces. The doctor prescribed Miralax to be mixed his formula last Tuesday. Nothing happend until Sunday. I put out a message to all the moms I have in my pnone book. One of them called me and she has been told by a gastrointerologist to never mix Miralax with milk, it will only clog things up worse. We had the weekend attending paged and told him this info. He then ordered that the Miralax be mixed with Pedialyte. Within 3 hours he had overflowed his diaper. Dad & I were ecstatic over this huge mess.
Dad got to hold him for about an hour. Little man did so good. He loves being held. Then Drayke decided to spit up his methodone. He has done this a few times now & may may need to switch him to IV.
This mornings xray his lungs looked a bit wet so he go some Lasix to help dry things out. He ended up having a diaper that weighed 238 grams, urine only!!!
A friend from Centennial posted this on her MySpace. She was right about needing to pull out the tissues:
What Makes A Mother
I thought of you and closed my eyes
And prayed to God today.
I asked what makes a Mother
And I know I heard him say.
A Mother has a baby
This we know is true.
But God can you be a Mother
When your baby's not with you?
Yes, you can He replied
With confidence in His voice
I give many women babies
When they leave is not their choice.
Some I send for a lifetime
And others for a day.
And some I send to feel your womb
But there's no need to stay
I just don't understand this, God
I want my baby here
He took a breath and cleared His throat
And then I saw a tear.
I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say
"We go to earth to learn our lessons
Of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.
I feel so lucky to have a Mom
Who had so much love for me
I learned my lesson very quickly
My mommy set me free.
I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep
On her pillow's where I lay.
I stroke her hair and kiss her cheek
And whisper in her ear.
Mommy don't be sad today
I'm your baby and I'm here."
So you see my dear sweet one
Your children are ok
Your babies are here in My home
And this is where they'll stay.
They'll wait for you with Me
Until your lesson is through.
And on the day that you come home
They'll be at the gates for you.
So now you see what makes a Mother
It's the feeling in your heart.
It's the love you had so much of
Right from the very start.
Though some on earth may not realize you are a Mother,
Until their time is done.
They'll be up here with Me one day
And you know you're the best one!
He was weighed Sunday morning. Since he had not pooped in more than a week I know this will be dropping. He weighed 11 pounds 10 ounces. The doctor prescribed Miralax to be mixed his formula last Tuesday. Nothing happend until Sunday. I put out a message to all the moms I have in my pnone book. One of them called me and she has been told by a gastrointerologist to never mix Miralax with milk, it will only clog things up worse. We had the weekend attending paged and told him this info. He then ordered that the Miralax be mixed with Pedialyte. Within 3 hours he had overflowed his diaper. Dad & I were ecstatic over this huge mess.
Dad got to hold him for about an hour. Little man did so good. He loves being held. Then Drayke decided to spit up his methodone. He has done this a few times now & may may need to switch him to IV.
This mornings xray his lungs looked a bit wet so he go some Lasix to help dry things out. He ended up having a diaper that weighed 238 grams, urine only!!!
A friend from Centennial posted this on her MySpace. She was right about needing to pull out the tissues:
What Makes A Mother
I thought of you and closed my eyes
And prayed to God today.
I asked what makes a Mother
And I know I heard him say.
A Mother has a baby
This we know is true.
But God can you be a Mother
When your baby's not with you?
Yes, you can He replied
With confidence in His voice
I give many women babies
When they leave is not their choice.
Some I send for a lifetime
And others for a day.
And some I send to feel your womb
But there's no need to stay
I just don't understand this, God
I want my baby here
He took a breath and cleared His throat
And then I saw a tear.
I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say
"We go to earth to learn our lessons
Of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.
I feel so lucky to have a Mom
Who had so much love for me
I learned my lesson very quickly
My mommy set me free.
I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep
On her pillow's where I lay.
I stroke her hair and kiss her cheek
And whisper in her ear.
Mommy don't be sad today
I'm your baby and I'm here."
So you see my dear sweet one
Your children are ok
Your babies are here in My home
And this is where they'll stay.
They'll wait for you with Me
Until your lesson is through.
And on the day that you come home
They'll be at the gates for you.
So now you see what makes a Mother
It's the feeling in your heart.
It's the love you had so much of
Right from the very start.
Though some on earth may not realize you are a Mother,
Until their time is done.
They'll be up here with Me one day
And you know you're the best one!
Wednesday, November 19, 2008
205th Day in the NICU
The meeting yesterday went better than I had anticipated. It lasted and hour and a half. Dr M from Cardiology, Dr C & Dr R, 2 nurses and someone else whom I have no clue as to who she was were in attendence.
The main points of discussion is where to go from here, our goals for the next month and if Drayke codes what are the limits we are setting as far as bringing him back.
Dr R's main concern is if the pulmoary hypertension is "fixed" which means there is no reversing what has happened. Dr M & Dr C both feel that we are still in a position where Drayke can still beat this. Dr P last Friday also expressed this as well. We have to get him growing. I told them flat out "we have to get his bowels moving so we can get back up to full feeds. Period." I also stressed that since 11/1 there have been no changes to any of his settings on the vent & nitric. How can we see what he tolerates if we leave everything as is? The same goes for the sedation he is on.
The conclusion was we were going to very slowly start weaning his O2 & morphine. His feeds have also been upped to 4ml/hour with muscelax (sp?) to help get his upper GI moving. Today & yesterday he has been doing great, just like when Dr P & Dr C had him. We are back on the right track again. We mentioned how people have brought up ethics questions about how they feel we are doing so much to our little man. We were told that what is being done is definately not over the top as far as his care. There are more drastic things that could be done. We did not even ask as to what those were because we feel that Drayke will make it thru with what is being done at this time.
The other part of the meeting was what happens if Drayke codes? We all agreed on what dad & I felt were acceptable conditions. No epiniphrin, no shocking him, CPR until we get there. We told them how we were afraid to sign a DNR because he may just have a clogged ET tube if something happens and didnt want him die because of something easily taken care of. The doctors were all in agreement that everything would be done except those items listed above. So it is noted in his chart.
On a very down note: one of the moms we have made friends with at the RMH has had to make a hard decision. She gave birth to twins a couple of months ago. The boy has multiple PVL's (holes in his brain) and has been having seizures. Yesterday morning he had a series of them and is now considered to be brain dead. When I found out about this last night I went to my room & burst out crying. I prayed for the gentle release of his soul at the same time as being thankful for the continued life of my son.
Being in the NICU as long as we have, I have seen so many babies die. Parents being fearful of leaving their childs bedside. The phone ringing and seeing the 615 area code and all you can think is please god let the baby be ok. It does not get easier. Feeling extreme sadness for both parent and child and greatful to have dodged the dark spector again. Death is always so close. As I have said before, I would not wish this experience on to my worst enemy. I am praying for the day when I can again cry tears of joy.
The main points of discussion is where to go from here, our goals for the next month and if Drayke codes what are the limits we are setting as far as bringing him back.
Dr R's main concern is if the pulmoary hypertension is "fixed" which means there is no reversing what has happened. Dr M & Dr C both feel that we are still in a position where Drayke can still beat this. Dr P last Friday also expressed this as well. We have to get him growing. I told them flat out "we have to get his bowels moving so we can get back up to full feeds. Period." I also stressed that since 11/1 there have been no changes to any of his settings on the vent & nitric. How can we see what he tolerates if we leave everything as is? The same goes for the sedation he is on.
The conclusion was we were going to very slowly start weaning his O2 & morphine. His feeds have also been upped to 4ml/hour with muscelax (sp?) to help get his upper GI moving. Today & yesterday he has been doing great, just like when Dr P & Dr C had him. We are back on the right track again. We mentioned how people have brought up ethics questions about how they feel we are doing so much to our little man. We were told that what is being done is definately not over the top as far as his care. There are more drastic things that could be done. We did not even ask as to what those were because we feel that Drayke will make it thru with what is being done at this time.
The other part of the meeting was what happens if Drayke codes? We all agreed on what dad & I felt were acceptable conditions. No epiniphrin, no shocking him, CPR until we get there. We told them how we were afraid to sign a DNR because he may just have a clogged ET tube if something happens and didnt want him die because of something easily taken care of. The doctors were all in agreement that everything would be done except those items listed above. So it is noted in his chart.
On a very down note: one of the moms we have made friends with at the RMH has had to make a hard decision. She gave birth to twins a couple of months ago. The boy has multiple PVL's (holes in his brain) and has been having seizures. Yesterday morning he had a series of them and is now considered to be brain dead. When I found out about this last night I went to my room & burst out crying. I prayed for the gentle release of his soul at the same time as being thankful for the continued life of my son.
Being in the NICU as long as we have, I have seen so many babies die. Parents being fearful of leaving their childs bedside. The phone ringing and seeing the 615 area code and all you can think is please god let the baby be ok. It does not get easier. Feeling extreme sadness for both parent and child and greatful to have dodged the dark spector again. Death is always so close. As I have said before, I would not wish this experience on to my worst enemy. I am praying for the day when I can again cry tears of joy.
Monday, November 17, 2008
203rd Day in the NICU
The big meeting/conference is set for tomorrow at 11:30AM. I am nervous. Lots of doctors, nurses, respiratory therapists, social worker, dad & myself all discussing Drayke's prognosis & future care.
Discussed during rounds this morning about the absolute need for Drayke to get a trach. I feel down to the core of my being that he will surprise everyone and do far better with it rather than the ET tube in his mouth. The times he de-sats the worst? When his tube is getting re-taped. Other than that he does great. The RT made the argument to the doctor "you need to stop looking at numbers and think of the baby. He is 7 months old and cant develop the way he needs to with him intubated". All of his labs from this morning came back great. He is healthy except for the lungs.
Today we are starting him back on scheduled Methadone to begin the weaning process off of the morphine. We aregoing to do this very slowly. The morphine is clogging up the plumbing and he hasnt pooped in almost a week.
The nurse last night weighed him and Drayke is now a whopping 10 pounds 11 ounces! This is not water weight either. Now once he does start having bowel movements again I am sure that will drop a bit but dad are enjoying the fact he has gotten so big.
One small concern I have are his eyes. One seems to be a little off kilter, most likely due to him almost always being on a side and the muscles not quite developing correctly. They move together, but look a bit off. At least I am sure he can see and hear.
We finally have been able to use the new sheet I made Drayke. Dad found some dragon flannel at Joann Fabrics. It is so cute and I made sure that I left it long enough to turn into a fitted sheet once he gets home.
Discussed during rounds this morning about the absolute need for Drayke to get a trach. I feel down to the core of my being that he will surprise everyone and do far better with it rather than the ET tube in his mouth. The times he de-sats the worst? When his tube is getting re-taped. Other than that he does great. The RT made the argument to the doctor "you need to stop looking at numbers and think of the baby. He is 7 months old and cant develop the way he needs to with him intubated". All of his labs from this morning came back great. He is healthy except for the lungs.
Today we are starting him back on scheduled Methadone to begin the weaning process off of the morphine. We aregoing to do this very slowly. The morphine is clogging up the plumbing and he hasnt pooped in almost a week.
The nurse last night weighed him and Drayke is now a whopping 10 pounds 11 ounces! This is not water weight either. Now once he does start having bowel movements again I am sure that will drop a bit but dad are enjoying the fact he has gotten so big.
One small concern I have are his eyes. One seems to be a little off kilter, most likely due to him almost always being on a side and the muscles not quite developing correctly. They move together, but look a bit off. At least I am sure he can see and hear.
We finally have been able to use the new sheet I made Drayke. Dad found some dragon flannel at Joann Fabrics. It is so cute and I made sure that I left it long enough to turn into a fitted sheet once he gets home.
Friday, November 14, 2008
200th Day in the NICU
Happy 200th day of living outside the womb! Today has been great.
Drayke did incredibly well during the broviac placement. He really surprised the Fellow, Maria. She is the one who told us last Saturday that he had no chance of survival, etc.
Afterwards the surgeon came into the quiet room to let us know that they tried to go thru his neck/chest but his anotomy wouldnt allow for it so it was placed in his right thigh. The surgeon also told us how well everything went and that he has an availability on his schedule to get Drayke's trach & GI tube put in. WOW! We know he did good but not THAT good! YAY for my strong baby bug!
About 30 minutes after that our fave, Dr P, showed up and played with his vent. We told him what the fellow & nurse had said last week and all he said was "and Fellow's have a LOT more to learn". He is still confident that we keep going as we have been Drayke will make it. ALL of his problems stem from the Brochial Pulmonary Displasia, BPD. Once we get that back under control, and it looks like we are on the right track, that the heart WILL take care of itself. He is totally against any kind of surgical repair to his heart. Dr P thinks he simply had a setback from having back to back staph infections. It was the first breathe of fresh air we have had all week. With Dr P this confident, our hopes are high. Gods I love that doctor.
Dr R came in after that (baby's current attending) and spooked us a tad by telling us he had ordered a blood test. He had finally done an actual physical exam of Drayke & noticed that 4 toes are partially fused (2 on each foot). The technical term is syndactyly. R & I then told him we both have webbed toes and showed the Fellow. The both laughed and said yep, it's genetic. I asked him to still go ahead with the test so we know what it says.
The two pics are from today after the surgery.
Drayke did incredibly well during the broviac placement. He really surprised the Fellow, Maria. She is the one who told us last Saturday that he had no chance of survival, etc.
Afterwards the surgeon came into the quiet room to let us know that they tried to go thru his neck/chest but his anotomy wouldnt allow for it so it was placed in his right thigh. The surgeon also told us how well everything went and that he has an availability on his schedule to get Drayke's trach & GI tube put in. WOW! We know he did good but not THAT good! YAY for my strong baby bug!
About 30 minutes after that our fave, Dr P, showed up and played with his vent. We told him what the fellow & nurse had said last week and all he said was "and Fellow's have a LOT more to learn". He is still confident that we keep going as we have been Drayke will make it. ALL of his problems stem from the Brochial Pulmonary Displasia, BPD. Once we get that back under control, and it looks like we are on the right track, that the heart WILL take care of itself. He is totally against any kind of surgical repair to his heart. Dr P thinks he simply had a setback from having back to back staph infections. It was the first breathe of fresh air we have had all week. With Dr P this confident, our hopes are high. Gods I love that doctor.
Dr R came in after that (baby's current attending) and spooked us a tad by telling us he had ordered a blood test. He had finally done an actual physical exam of Drayke & noticed that 4 toes are partially fused (2 on each foot). The technical term is syndactyly. R & I then told him we both have webbed toes and showed the Fellow. The both laughed and said yep, it's genetic. I asked him to still go ahead with the test so we know what it says.
The two pics are from today after the surgery.
Thursday, November 13, 2008
199th Day in the NICU
Drayke has been fairly stable this week. Tomorrow he is getting a Broviac line put in because he can blow thru an IV in no time. A couple of days ago a nurse practitioner attempted to get a second PICC in but she couldnt get it the thread to where it needed to go.
The reason we have agreed to the Broviac is the lipids they are wanting to give him are not compatable with the Ativan going thru the same line. Also, we can do blood draws on him without having to stick him (the PICC on babies is much too fine a catheter, it could clot off easily).
The conference with all of his doctors, some nurses and ourselves has been rescheduled to early next week. It doesnt do any good to have a meeting of the minds without his cardiologist.
Dad & I have been doing a lot of research into a potential surgical procedure to help with the pulmonary hypertension. Install a shunt to equalize pressures in the heart. Our friend from Centennial was sent here due to a hole in his heart. It was decided that it was this hole that was preventing him from getting PH so it was decided to leave it as is. This proceedure used in combination with a surgery for the septal hypertrophy could potentially take care of his issues. It is a long shot and we are going for broke on this.
The reason we have agreed to the Broviac is the lipids they are wanting to give him are not compatable with the Ativan going thru the same line. Also, we can do blood draws on him without having to stick him (the PICC on babies is much too fine a catheter, it could clot off easily).
The conference with all of his doctors, some nurses and ourselves has been rescheduled to early next week. It doesnt do any good to have a meeting of the minds without his cardiologist.
Dad & I have been doing a lot of research into a potential surgical procedure to help with the pulmonary hypertension. Install a shunt to equalize pressures in the heart. Our friend from Centennial was sent here due to a hole in his heart. It was decided that it was this hole that was preventing him from getting PH so it was decided to leave it as is. This proceedure used in combination with a surgery for the septal hypertrophy could potentially take care of his issues. It is a long shot and we are going for broke on this.
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