"Budded on Earth to Blossom in Heaven"
11-22-99 to 12-21-99
E-Coli Bacterial Meningitis Wow, the feeling to know that you have an actual life growing inside of you. It a miracle, that’s the only way to explain it. We were expecting our second child, it was perfect timing, we wanted our children to be 3 years apart and by the time this one was due, our son would be turning 3 a month later. I had had a terrible pregnancy with my first son, and a really scary delivery, so I couldn’t believe how easy this pregnancy was. We found out that we were having another boy. Grayson Ryan, I would be induced sometime in Nov when he would be around 37 weeks, due to having a history blood pressure problems in my last trimester.
We had a lot of sonograms to watch his growth and got to see him do things that his older brother was doing. Like when Tyler gets sleepy he rubs his hair with his hand, and we caught Grayson on the tape yawning and rubbing his hair. It was wonderful.
Nov. 22, 1999, 8:00 am. We headed for the hospital. At 10 they inserted the pill that helps to thin out your cervix and said they would be back in an hour to start the petocin, but Grayson and my body had other plans, within 10 min. I was contracting. Things weren’t going anything like my first labor; it was so easy this time. I sat in the rocking chair in my room and rocked through my contractions it was wonderful. About 3 o’clock my water broke and at 5:20 pm. We had the most beautiful healthy (so we thought) little boy.
There were so many tears, we all cried including my Dr. since we had gone through so much before. Grayson Ryan was here. We spend a wonderful evening with him. My husband went to the nursery with him and help bath and weigh him. They moved me to my room and brought him straight to me. We hadn’t got to do this with out first son; he had gone straight to the NICU due to having to be resuscitated right after delivery. So this was a new bonding that we had never gone through. I breast fed him, changed him, cuddled and rocked him. We all took turns passing this perfect little baby around. We couldn’t believe that someone could be so perfect. I even remember saying several times; “he is just too perfect” boy was I right.
Wed, Nov 24th, we are waiting to be released, they
come from the nursery and tell me that Grayson is a little jaundice and they
would like to keep him over night under the ultraviolet lights. My Dr.
immediately insisted that I stay to. I was going home with a baby in my arms
this time; Tyler had had to stay for several days.
Thursday, Nov 25th Thanksgiving Day, we are going home, I had already been released, they were in the nursery releasing Grayson, they would be here soon. We had the car seat ready, the bags packed. Ready to walk out the door when they brought our little boy to us.
Well, they came into my room empty handed, with a puzzled look on their faces. We need to talk, your baby is acting a little funny, he is making little noises that can be the sign of an infection somewhere and that his direct billirubin levels were up, this is not the one the causes the jaundice. They need to keep him for observation, well within an hour our precious little boy was in the NICU on a respirator. The Dr.’s all running around like there is an emergency, what’s wrong, I couldn’t figure out what could be wrong. They had already mentioned that he could have a liver problem and might need a liver transplant, but told us that was ruled out. They did several spinal taps, and they finally got enough fluid. All this time we are standing back, the world was at a stand still, what is wrong. They told us to go home and eat and come back, they should have some answers for us then. We left empty handed again, what is it, will I never get to take my children home from the start? We headed to my parents house and sat down to eat. How can I eat Thanksgiving dinner, what do I have to be thankful for, my son is in the hospital they don’t know what is wrong with him. I have to go back. We headed right back to the hospital.
They did have a partial answer, Grayson has spinal meningitis, but it will take several days for the cultures to grow to know exactly what kind. In the mean while they started him on all the antibiotics that treats all the common stains of meningitis. My little soldier started the fight for his life. I stayed by his side, I couldn’t leave, his little veins were giving out and they had to keep looking for new IV places. Three days later Nov 28th we are told that Grayson has E-Coli bacterial spinal meningitis. WHAT! That is all I could say, HOW! It didn’t make sense. They told us that it is usually pretty treatable; 6 weeks of antibiotic treatment should clear it up. All I could think was, we will have him home for Christmas. I remember in all my prayers, God, just let my son be home for Christmas. Grayson had many ups and downs; they finally put in a central line to keep from having to put any more IV’s. He had platelet and blood transfusions daily. His platelet levels just wouldn’t stay up; the bacteria seem to be eating them up just as fast as they could give them to him. He started to develop fluid filled pockets on his scalp; they brought in a pediatric plastic surgeon to take care of them. He came and talked to us and told us that the pockets were just full of e-coli. They hadn’t seen such a case. This had them all really stumped. Grayson had to be put on a high frequency respirator the other one did have enough to keep his lung pressure up. They need to do something he was going down hill, it was like every little step we took in the right direction, and we took 3 more in the wrong. Dec. 14th we made the decision to transfer Grayson to a hospital that had a pediatric ECMO team, they had they idea to try and put Grayson on the artificial heart and lung machine so that his body could rest. If he made the trip there. We all held our breath, my dad, stayed up with the ambulance, they wouldn’t’ let me ride with them. What happens if I loose my little boy and I’m no there? It just can’t happen. We pulled up the same time the ambulance did. They unloaded Grayson and all they could say was we can’t believe how well he made the trip.
They took him in and while we waited in the waiting room, got him settled in. The Dr. came out to tell us that the ECMO Dr. would be right down to evaluate Grayson for the machine. An hour later he comes out and in his exact words tells us “ I hate to be blunt with you, but if we put your son on the machine he will not make it through the night. With his platelets being so low he will bleed out within a couple of hours.” We did this for nothing, NO. We did this for our son. Anything to help him. The doctors continued to research, family and friends continued to pray, and Grayson continued to fight.
Sunday Dec. 19th my sister-in-law was staying at the
hospital in the room they had for my to stay in. I wouldn’t leave Grayson. I
wake up at 3 am and I am hurting like I had never hurt before, we call the
emergency room and they come with a wheel chair. Diagnosis, gallbladder, RX
surgery. Okay I tell everyone, someone go and sit with Grayson, don’t leave him
alone. While in surgery Grayson’s lung collapsed they have to insert a chest
tube. I am out of it the rest of the day and night, but all I talked about was
Grayson, and continue to ask how is he.
I am released the next morning we head straight for the NICU, there he is my little soldier, his saturation levels are down and so is his blood pressure. I sit with him all day, there is no improvement. The Dr. comes and wants to talk. He is not doing any better; he explains that he has never had a baby on the ventilator support that Grayson is on. And that his heart or lungs could give out any time. I leaned over to my little boy before we leave and kiss his little forehead, “Grayson, mommy’s little soldier, it’s okay for you to rest now. I know that you tired; you don’t have to fight anymore. Just rest” my dad and I go to my room. I get in bed and pray God,” I am ready to let my son go, if that is what is your plan, thank you for the time that you have given us.” We woke up early got dressed and headed to the NICU. On the way I told my dad, I need to let him go. I walked up to Grayson’s bed, “how’s my little solider?” The nurse looks and me and says, “he listened to what you said, it’s like he was just waiting for your permission to let him rest” his stats. Were really down and the Dr. explained, it could be min, it could be hours, I just can’t tell you when, you have three options, leave him like he is and let him go, leave him in the bed and take off the machines, or take off the machines and hold him. What option was there, only one that I could see; my son was not going to leave this world in that cold sterile bed that he had been laying in for a month. They lead me to room that was wonderfully decorated by a family that had lost a child before. It was a nursery with an angel theme. I sat on the couch with my dad by my side. The Dr. said it will be just a min. and we will bring Grayson to you. I will never forget the alarm on the ventilator go off when they took it out. I felt like my heart had hit the floor. They brought my precious little boy in a baby blue gown, wrapped in a blanket with a hat on his head. They had medicated him so that he would be in no pain, and not suffer, I held him and cried for the last 25 min, of my little boy’s life. I rubbed his cheek, held his hand, and kissed his head.
I will never forget the feeling I had when I handed him over to the Dr. knowing that this was the last time that I will ever hold my precious little boy.
We left the hospital and had to go home and tell my husband, son and the rest of our family that he was gone. GONE! I couldn’t believe it. We were only home an hour and I already knew what I wanted him buried in. I called the store to see if they had it and they held it at the front desk for me. We left right away to go get it.
The next morning we went to the funeral home to make the arrangements. I can still here my mother’s words as we walked out the door “please don’t bury that baby in a Styrofoam container” My parents had had a stillborn baby years ago and that is just what they buried them in back then. I know I couldn’t do that. They showed us a few caskets and nothing seemed right, “why am I doing this, why do they have caskets this small this isn’t happening.” Then they brought the last one to us that was the one. A beautiful white casket, with white silk lining, gold trim, gold angels on each corner and a little gold angel and dove in the insert on the inside lid. It was perfect, if that is what I had to do.
Dec 23rd we buried our precious little boy. Our little angel Grayson Ryan Dean “Budded on Earth to Blossom in Heaven” is what his headstone says. With a ceramic color picture on it.
I couldn’t believe that so many people had shown up. The chapel was packed to standing room only and then there were people standing outside the doors. NICU nurses, Neonatology’s, labor, delivery nurse,. Family, and friends. All there.
We go home, nothing what do I do now. I am supposed
to be taking care of a newborn baby, my 3 year old is trying to be Mr.
Independent so what am I suppose to do. I attended a local support group in Jan.
it was wonderful, I am not in this alone. But why are any of us here? Babies
are not suppose to die, they are suppose to be the start of life, our children
are suppose to bury us, not us out live and bury them. That night I decided on
my way home Grayson’s life will not be in vain, he life will count for
something. After a lot of research on the Internet, I found that there is a
‘Pregnancy and Infant Loss’ awareness ribbon, like to cancer awareness one’s
only this one is pink and blue. I went straight to the store and bought
ribbons, thread and button, and sat down and made 100 of them, I attached them
to a card that said this ribbon is donated in memory of your baby. The next
support group meeting I passed them out to everyone. A couple of weeks later I
received an email for one of the ladies that had received one. She thanked me
and asked if she could help me make some more ribbons, the first night there
were 5 of us that sat around a kitchen table and sewed ribbons until 1am, we all
talked about our babies and it really helped.. I still felt like I need to do
more. Another lady comes aboard the group. I had to change the ribbon card
that said from Darla Dean to something from the group that made them there at my
computer that night, TX Moms of Tiny Angels was born. My best friend and I
discussed it the next day and we approached the other 5. We want to start a
support system the awareness needs to be there. The resources, the memory ideas,
things we have found out that we didn’t know before.” And it grew and grew. I
work on the organization daily, it is my way of taking care of Grayson, a year
after Grayson’s death I gave birth to our daughter Mykenzie Hope, and she is my
hope that life goes on. TMTA is my hope that life goes on. It has been 2 ½
years, it still hurts everyday, the pain isn’t as intense, but it is still
there. Grayson’s pictures hang on our wall, his outfit that he was suppose to
come home in is in a shadow box on the living room wall the selves are full of
angels collected and given in memory of his life, his death, his birthday’s. We
have our family pictures taken with his picture in it. He is still apart of our
family. I will get through this one day at a time, sometime I have to take it
one minute at a time. But I know in my heart now, that I will make it. If you
would like to see more about TX Moms of Tiny Angels please visit our website at:
www.txmomsoftinyangels.org or email me at: firstname.lastname@example.org
In love, our baby was conceived,
With joy, the good news was received
In hope, we waited the long month through
With sadness, we gave him back to you.
With love, you reached down your gentle hand
In pain, though we could not understand
With strength, you turned our weakness around
In you, our Hope and Peace is found
In Memory of our precious little one
Grayson Ryan Dean
11-22-99 to 12-21-99