November 22, 1999 – December 21, 1999
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 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.
Monday, November 22, 1999, 8:00 am:
We headed for the hospital. At 10:00am 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 doctor 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.
Wednesday, November 24th:
We were waiting to be released and they came from the nursery to tell me that Grayson has a little jaundice and they would like to keep him over night under the ultraviolet lights. My doctor immediately insisted that I stay too. I was going home with a baby in my arms this time; Tyler had had to stay for several days.
Thursday, November 25th – Thanksgiving Day:
We were set to go home, I had already been released, they were in the nursery releasing Grayson. We had the car seat ready, the bags packed and were 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 billiribbon 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 doctors were all running around like there was 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 were 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 and 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 meanwhile they started him on all the antibiotics that treat 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 November 28th we were told that Grayson had 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 needed to do something, he was going down hill, it was like every little step we took in the right direction; we took 3 more in the wrong.
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 survived 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 doctor came out to tell us that the ECMO doctor 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, December 19th:
My sister-in-law was staying at the hospital in the room they had for me to stay in. I wouldn’t leave Grayson. I woke up at 3 am and I was hurting like I had never hurt before. We called the emergency room and they came with a wheelchair. The diagnosis is gallbladder and I need surgery. While in surgery Grayson’s lung collapsed they have to insert a chest tube. I was out of it the rest of the day and night, but all I talked about was Grayson, and continue to ask how he is.
I was released the next morning and 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 and there is no improvement. The doctors comes and want to talk. He is not doing any better. The doctor 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 to 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 the next morning, 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 doctor explained, it could be minutes, 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 doctor said it will be just a moment and we will bring Grayson to you. I will never forget the alarm on the ventilator going 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 would not suffer. I held him and cried for the last 25 minutes 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 doctor 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 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!” I told myself. 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.
On December 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 were all there.
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 January. It was wonderful and 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. His life will count for something. After a lot of research, I found that there is a ‘Pregnancy and Infant Loss Awareness Ribbon, like the cancer awareness one’s, only this one is pink and blue. I went straight to the store and bought ribbons, thread and buttons, 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 needed to do more. Another lady came aboard the group. I had to change the ribbon card that said from Darla Dean to something from the group. That night, at my computer I came up with , Texas Moms of Tiny Angels. My best friend and I discussed it the next day and we approached the other 5. If we want to start a support system, the awareness needs to be there as well as the resources, the ideas and things we have found out that we didn’t know before. The group 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. She is my hope that life goes on. TMTA is my hope that life goes on. It has been 2 ½ years and 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 shelves are full of angels collected and given in memory of his life, his death and his birthdays. 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. I know in my heart now, that I will make it.
In love, our baby was conceived,
In Memory of our precious little one
Grayson Ryan Dean
11-22-99 to 12-21-99