Tuesday, May 6, 2014

So much happened on little mans 6th birthday that I neglected to make a post.

I have re-embraced my geeks side and am now a part of a huge Star Wars fan group called the 501st Legion. I became official on Drayke's birthday, April 28th. Also, that evening, my mother went to the hospital with what we thought was a bag stomach bug but turned out to be she threw a huge gall stone into her small intestine. Surgery at 78 sucks So it has been a sad, awesome, scary week.

Over the last year I have had my fiancé leave me, skin cancer surgery on my scalp, a transient ischemic attack (TIA=mini stroke) and my former husband died. Needless to say it has been a fairly rough year but I am not complaining. Quite the opposite actually.

I have some awesome friends here in Nashville and am finally feeling like a part of life again. I still have my moments but a fewer and farther between. Life is finally on the upswing.

Tuesday, April 30, 2013

Five years...

It is hard to believe that it has been five years since my little man was born. It's been a year since I last posted here. Life has been empty since he died. I just cant quite get back in to the regular swing of things. Work is going very good but everything else, not so much. I have almost been in denial that it is April already. I awoke at 4:30 this morning crying where all I could think was I missed his birthday two days ago. Now, I cant stop crying.

I have a minimal relationship with Drayke's father as he now lives in Indiana. I was engaged to a man for a year, he moved here in August & left without a word in January. I recently had surgery on my scalp to remove a spot of skin cancer. My diabetes is out of control. I have lost my creative side.

It feels like I am going thru the motions of living but I have no life. I have no true happiness, no true serenity in my heart. A huge part of me died on January 26th 2009. Try as I might, I will never be back to the person I was or that I was meant to be.

Saturday, April 28, 2012

Happy birthday

4 years ago you came into my life in a big way little man. I am forever changed. Being told that the C section was happening that day. Telling everyone I am not gong into surgery without your daddy there. The amazing little cry you let out when the doctors took you to the examining table. "Is that him" I asked, amazed that I could hear you and how strong you sounded for someone so little. Five sticks of butter. That's how much you weighed. 1. lb 4.7 ounces. My tiny little fighter with the heart of a dragon. Love you forever sweetheart. You will always be the greatest love of my life.

Thursday, January 26, 2012

3 Years Ago Today

I will always love you, my sweet little fighting dragon.

Saturday, January 14, 2012


One of my former fellow NICU moms p[osted an article about how a child is being refused a transplant due to having brain damage. This brought back the memories of being at Centennial when were told how Drayke couldnt get his transplant because he needed to grow a bit more. When we tranferred to Vanderbilt the head of their NICU contacted St Louis Childrens to get the real scoop as to why Drayke was not accepted yet. They told him that Drayke was not ever a candidate due to the potential of him having brain damage due to being intubated his entire life. Potential brain damage. That is messed up.

If a person has a chance to live, even with brain damage (now if they are in a vegatative state that is a whole different thing) and can have a fairly normal life, then they should be allowed to have that chance. St Louis had no proof that Drayke had severe brain damage. He never showed any neurological problems. They assumed that if you are intubated for 5 months then you are going to have issues. Well, they are the ones who stated the minimum birth age was 28 weeks, so extreme prematurity is not the problem. They should not assume there is a problem when there is no documented proof there was any.

I am just angry today about this. I miss my son.

Monday, May 16, 2011

Baby's First Day on TV

I was channel surfing this morning and stopped on a preganancy show like I always do. Guess I am a masochist at heart. Anyway, eating my breakfast & watching on & off when I hear a doctor talking on the TV. I look up and get a huge grin on my face because it's Dr Lance Prince from Vanderbilt. I love this man. He is the one who gave us those extra four months with Drayke. He never gave up on my son and he cried the day Drayke passed. I have never seen a doctor so passionate. He was the one who set up the protocal that was followed by Drayke's doctors. All of Drayke's doctors at Vandy were great but it is Dr Prince who I will always hold fondest in my heart.

Thursday, April 28, 2011

Happy 3rd birthday Baby Bug

Today has been a fairly melencholy day. Wore my silver necklace that a reader of this blog made for Dad & myself. Worked all day, came home & figured the perfect birthday dinner for a 3 year old: hot dog, macaroni & cheese and for dessert, chocolate pudding.

Watching Greys Anatomy was not the easiest episode to watch tonight given that a bit of it takes place in the NICU. While watching something very surprising happend. A firefly/lightning bug was flying around my apartment, backside blinking away. These never show up around middle TN until late May/June. I smiled, thinking this is Drayke's way of saying "hi, I'm here mama". I think I will sleep well tonight.

Sunday, March 6, 2011

Fixed the widget

I just went back to the MoD site and got the widget corrected. Yay!!!

Now come on! Donate to this fantastic cause. It is one organization that truly makes a difference.

Friday, February 18, 2011

2011 March For Babies

It is that time of year. Time to pull out the walking shoes & get moving for a great cause. The March of Dimes helped fund the research that went into what kept Drayke alive as long as he did. Surfactant, nictric oxide and many other things. This is important not just to me, or NICU moms, but to anyone who has or will have a child. Their research is helping to bring healthier babies into this world. Help them keep up with the great work. Donate or walk yourself. Either is appreciated.

The widget is not showing the correct amount. My goal this year is $500.

Wednesday, January 26, 2011

2 years ago

It's been 2 years since Drayke passed from this life. Things are different. I am a changed person. I now have a job that I completely enjoy. I moved up to Nashville a few weeks ago & am loving being back in the city where I spent so much time in 2008.

I have yet to get back into a regular rhythm of living. Still feel rather disjointed & lost without my lil man in my life. I am still seriously thinking about adopting a child. Maybe after a few months here in the apartment and at the job I will begin persuing things in that direction. Work has adoption financial assistance & they are really good about their employees & kids.

Moving here to Nashville is the biggest step I have taken towards creating a new life for myself. It will take time but I am working towards a happier life. A life in which I can be happy & fulfilled. A life where I can cherish the sweet memory of my son rather than wallow in the misery of the deep sadness that has engulled my life for the last 2 years. Drayke loved seeing me happy & smiling at him. He would get all wiggly, waving his arms & legs. I am getting my happy back baby boy. You would be proud of your mama.

Monday, August 30, 2010

Keep thinking about my lil man

Every day, and I mean EVERY day, I think of my son. I wonder at what he would look like, being a little over two years old. How he would be toddling around the house, getting into all kinds of things he shouldn't. I see him in the carseat in the backseat of my Beetle where I currently have a cute purple stuffed bunny seatbelted. The bunny I got for Drayke for Easter last year after he had passed.

I go shopping and find a romper that is so cute with a moose and the words "Wild Thing" on it. Then I notice a little number logo that has a "28" on the shoulder. His birthdate. It is so perfect for the lil man I see in my minds eye. I fight the urge to buy it every time I walk into the store. I think he would fit perfectly in the 24 month size. It is only $6 but I fight the urge, knowing it would only be folded and added into his dresser with his other unworn clothes.

My mom told me something the other day she had told my sister. "What will happen to Lorri if Drayke doesn't make it?". My mother responded "She will die. And you have. Your body just hasn't caught up to your heart". She is right. I am just going thru the motions of living but I feel my soul, the core of my being, has been lost. It has been more than a year and a half since Drayke died and I feel as alone and desolate as the day he passed.

Wednesday, April 28, 2010

My sweet Little Dragon

My sweet little man, Drayke. Today you would have been two years old. I can see you toddling around the house getting into all kinds of mischief. I can see your sly little smile looking up at me with those amazing blue eyes, knowing I could never resist smiling back. You are the best thing to have ever happened to me. I love you.

2 years ago from Today

2 Years ago from today my little man was born. Even though he is not with us in body he is sure with us in spirit. I dreamt of him last night and woke up at 1 am just to realize it was a dream. Every moment of every day I wish he was still here with us but I do know that I will see him again. The day he was born changed us so much and even now still changes us from within. Happy Birthday my little man.

Monday, April 19, 2010

March for Babies Nashville 2010

Drayke's father and I went to the Nashville March for Babies yesterday, April 18th 2010. It was an absolutely gorgeous day. Warm sun & cool breezes. There were a lot of people there as well as huge teams. A far cry from the Lewisburg walk.

We ran into some old NICU friends, Mollie & Jerrica as well as their amazing children. I actually got to hold Daxton for a few moments.

It has been really hard, seeing all the little ones who were in the NICU with us. They are all turning two now. Dont get me wrong, I am beyond happy that they are thriving. But it is always a reminder of those who werent so fortunate. So many that I was personally touched by. So many that I cant remember all their names. I spent a good part of the day crying.

Afterwards was the annual Vanderbilt Children's Hospital Time for Remembering event. This is for the families who have had children die at the hospital. It was another round of crying non stop for an hour. After the presentation we all walked over the the hospital to plant impatiens and they gave us rosemary plants to take home with us.

Even though it was a day full of tears it was one of the best days I have had all year.

Saturday, February 6, 2010

It is that time of year

Please click on the March for Babies link on the right to sponsor me.

Gosh, it's hard to believe it has been a year since I walked in my first March for Babies event. This is a cause that is very near & dear to my heart.

Please donate to this very worthy cause. Let's make what happend to Drayke a thing of the past .

Tuesday, January 26, 2010

It has been a year since he passed

This is the last picture that was taken of Drayke. We were saying our goodbyes. The hardest thing I have ever done in my life was walk out the door of his room. All I wanted to do was go running back and sweep him up in my arms and never to let go.

But sometimes we do have to let go of those we love to be able to survive.
I will see him again and hold him in my arms.

He was my life.

I will love him forever.

My sweet baby dragon.

My amazing lil man.

My son, Drayke.

Thursday, December 24, 2009

Have a safe holiday

These are some pics Drayke grandma took while she visited him during Christmas last year. She was so proud of him and she loved his little sneakers. She just thinks they were the most adorable shoes ever.

Saturday, October 31, 2009

Happy Halloween

Little man from last year waiting for the Great Pumpkin.

Monday, October 26, 2009

Nine months have passed

But I still think of my lil man from a year ago today. So awake with those gorgeous blue eyes.

Sunday, October 11, 2009

Another big step today

I have some NICU moms on my FaceBook that I know either personally or thru those I do know. Tiffany had a son the day I was admitted into Centennial. He was born at 23 weeks and died nine days later due to Nec. She is now 28 weeks with another son and I have been keeping up with her worries about this pregnancy.

As you know I still have a lot of Drayke's things. A few items we sold to a second hand shop in Brentwood but it just never felt right. I have thought about listing some items on Marshall County Free Cycle but I really wanted Drayke's things to go to someone who would really understand where I was coming from in my thinking. Tiffany fits the bill perfectly. I let her know that I had a brand new Graco travel system and Fisher Price swing that she could have if she wanted them.

She and her parents came by today after church. It was a very emotional first meeting. I had been in Drayke's room crying, trying to get some items together for them when they arrived. She came in and we held onto each other for a few minutes and just started talking like we were old friends. We talked a lot about Drayke and our stay at Centennial. Her parents mentioned a few times that if I wasnt ready or if I have any remorse about letting these things go not to hesitate to let them know and they will bring them back. I told them not to worry, they are theirs now. I also added in my silly way that if I do happen to adopt a baby to keep things in good condition after Salem is done with them because I may need them then.

Anything can happen. I cant keep beating myself up convincing myself that I will never have another child. I want one. I am a good mama. I have a lot of love to give a child.

If you want to read up on Tiffany go to: http://bradntiff.blogspot.com/

Wednesday, August 26, 2009

It has been so long ago and yet yesterday

It has been seven months today. I love you so much, my sweet little man. You are forever in my heart and thoughts.

Friday, August 21, 2009

It was a year ago today that we found out we were living on borrowed time with Drayke. It was the day he was diagnosed with pulmonary hypertension and told there was no chance for survival. It was my mothers birthday and I had to call her to come to Tennessee so she could meet her grandson before he died. We were so blessed to have him for another five months.


This has just been a really rough week.

Monday, August 17, 2009

A very sad day

Back on August 18th of last year a little girl was brought into Centennial NICU directly across from Drayke. She had been born the day before due to an emergency C-section. Being very premature she weighed 1 pound 4 ounces, almost the exact same weight as Drayke when he was born. I remember how frightened her mother, Nikki, was. I asked her to come over to Drayke's bed and look at how much progress he had made in his four months, weighing almost 8 pounds.

Payton has been at Vanderbilt for the last several months. Sucessfully had a trach and g-tube put in. She also had some surgeries on her eyes due to her extreme prematurity. She has been off nitric and has been on a home vent for the last week preparing to go home today, her first birthday. She was doing so good.

The powers that be had different plans. Some time late last night she passed away. I dont know the details & probably never will. Most can only imagine what it is like to have fought for so long for the life of your child. To see the light at the end of the long NICU tunnel only to have your very being yanked away from you.

I am beyond sad. This is devastating. Here is a child who's family constantly prayed over her, had such faith and this happens. For this to happen on her birthday AND the day she was to go home. I find that the powers that be, god/s, the fates, whatever, are intentionally cruel.

Why is it crack whores can punch out babies, not give a damn whether they live or die except for the check they bring in and yet women who would gladly give their own lives so their child could live watch the love of their life die in their arms? It's not fair. It's not right.

This has to end. Please support the March of Dimes and your local childrens hospital, especially if they are a research facility like Vanderbilt, St Louis Childrens, Pittsburgh Childrens, etc. Some day there will be a way to deal with prematurity complications and prevent these senseless deaths.

Thursday, August 6, 2009

While at Walmart the other day we saw the infant clothing clearence rack in the front of the store. They had marked it all to $1. Dad & I bought 53 outfits in preemie, newborn & 0-3 months sizes to donate to Vanderbilt NICU. I was crying the whole time I was pulling clothes off the rack but I remember how I felt when I would get a little outfit for Drayke from out of no where. I will always be thankful to Lilbuhnee for the clothes she sent us. Most of those clothes we donated to Centennial as Drayke was outgrowing them. I see it as kinda like paying it forward. Something as small as a simple onesie can bring a bit of joy to a fearful parent.

It would be lovely if people would goto their local Walmart, Target, KMart, whereever, go to the infant clearance rack and buy some preemie & newborn clothes. $10,$15 $20 worth, whatever you can spare. Take them to your local NICU and donate them. Trust me, you will make a stressed out parents day a shade brighter. Drayke's little Santa suit was donated to the NICU by an unknown person.

All of the baby clothes have now been washed, double rinsed, dried & put back onto hangers ready to be taken to the hospital. Now it figures I have a scratchy throat & cant go today. Pout. I miss his nurses & doctors.

Sunday, July 19, 2009

July 18th

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

Last picture of Drayke alive

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

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.