Tuesday, July 28, 2009

Our Story...How it all began

For those of you who have been following our journey, you know the ups and downs our family has gone through beginning on February 4, 2009 with the birth of our precious twin boys, Joey and Eli. After surviving the best and worst 6 months of my life, I have decided that I need a fresh start. But for those of you who are new to our story, I will try to summarize our history so that you will understand why I decided to begin a new page, one that will hopefully lead to healing as I struggle each day to live my life, a life I did not plan for, expect or ever even slightly imagine to exist.

My boys were born early, 25 weeks. There was no explanation for it, I wasn’t sick, I didn’t have gestational diabetes, I didn’t have high blood pressure. In fact, I was pretty healthy, I taught dance and a competitive drill team and had been taking it easy the previous semester. My husband and I had been trying for years to get pregnant and had lost one baby at 9 ½ weeks which resulted in a D&C procedure. We were ecstatic to find that we were pregnant with twins and even more shocked and thrilled to find out we were having boys.

I was expecting to be put on bed rest and during a regular check up, was told I was dilated and was immediately hospitalized for what should have been 9 weeks but only lasted 6 days. My sweet babies wanted to come early and Joey was born weighing 1 pound 10 ounces and Eli was born weighing 1 pound 7 ounces.

About a week after being born, we were told that they both suffered from bilateral grade 4 IVH (intra ventricular hemorrhage), the most severe brain damage. We were told that their lives would be difficult, possibly not worth living. We were told that they may be vegetables, crippled, have cerebral palsy, not speak…so many things. We were devastated but we prayed and believed that God would protect them, that they were born to serve him and lead a life with divine purpose.

Oh what they went through! They both had PDA’s (heart clips). Joey had severe lung issues that required him to be paralyzed and placed on an oscillator for 9 days. Eli had a jejunostomy that ended with his intestines attached to the outside with bags. His recovery was terrifying and we were told that he would die twice. We were told that it would be best to take him off support as if he did survive, he would be a vegetable. With the help of many prayer warriors, Eli and Joey transferred to Texas Children’s Hospital and not only survived but grew stronger and stronger every day. Eli had become a miracle baby! They were both miracle babies!

Their personalities grew and grew and they were both very different, but they were most definitely not vegetables. They were beautiful baby boys, my baby boys and they recognized me. I loved them so much and knew them well. I contributed in doctor’s rounds, assisted with care when allowed, held them for hours at a time, nurtured them and missed them each evening when I had to leave. Joey was growing to be the sensitive one. He wanted love when he wanted it and wanted to be left alone when he wanted it. He hated dirty or wet diapers and made sure everyone knew when it was time for a change. He was a fighter, so strong and determined. Joey had a bit of anxiety about things but he got that from his Mommy. Eli was the chilled out baby. He put up with so much. He loved people and was very social. He would hold his foot in the air to be pricked for blood samples. He loved to look at pictures, to hear stories. He was so bright and friendly, he had won everyone over with his charm. He was a precious little punkin. And I believe that it was his chilled out personality that helped him survive through all he had survived.

All the while, my sweet husband was trying to go to work during the day, law school at night and visit his sons after school as much as possible. He did a great job and was an excellent father! Unbelieveably he finished the semester only having to drop one class and still making excellent grades.

There were good days and bad days. I spent all day every day with them at the hospital, sometimes 12-18 hours. There were nights when I stayed all night in the Ronald McDonald House and there was no place else I wanted to be. I held them, loved them, dreamed of their homecoming. After being told that their lives would be difficult, that they would most likely need therapies, home treatments, extra care, I decided to resign from my teaching job that I had held for 12 years. It was a very difficult decision but the boys were the most important and I was so relieved that they had each other because I knew that they would be there for each other, there to support and encourage their brother and I was going to be their biggest cheerleader.

They moved closer to coming home when they were brought from Level 3 NICU to Level 2 until one day when Eli crashed unexpectedly. He had contracted a rare hospital infection that took weeks to rid from his body. And then we found out Joey’s eyes were not good. He went through 3 eye surgeries while still in the hospital. And he received a shunt to relieve the hydrocephalus in his brain. Joey was a fighter and handled it all with a little anxiety, but overall, very well.

During Eli’s time of recovery, his brother Joey was released home. It was bittersweet as we were ecstatic to have Joey home but my time from Eli was taken as they were in two different places and we had to adjust to caring for Joey, his doctor appointments and visiting his brother. I was determined to make it happen and I did!

Eli went through his surgery to reconnect his intestines by our favorite surgeon. This surgeon had performed 5 of the 10 surgeries on the boys and we grew to love and trust this very kind amazing man. The surgery went great! Eli was such a trooper. I was so proud of him and believed that we were about 6 weeks shy of him coming home too.

But then it happened. Eli had developed another infection from the antibiotic he needed for his last infection. And this was just after his surgery. His kidneys were already in bad shape and were not functioning well. I just knew in my heart that he would survive. I sent out prayer requests and believed. My faith was unending.

After about 4 weeks though, my beautiful sweet precious Eli’s body couldn’t hold out anymore. I remember the day so clearly. I whispered in his ear that it was ok, that he could go to Jesus. I told him that I knew he was holding out for Mommy because Mommy had asked him to fight. I told him that Mommy would be ok though, that if he was a tired little boy and needed to rest, it was ok now. He could say goodbye.

I knew.

I knew that he was going to leave me that day so we called our family and let them know, the grandparents came and said goodbye. We spent time as a family with Joey and Daddy and Mommy and Eli. We got pictures of the boys together, although Eli did not look like himself. It was heart wrenching. I sent Thomas and Joey home. My expectations were that I would stay next to Eli’s bed all night. We would sing, read, talk. I would call Daddy as soon as it was close and he would come back leaving Joey with the grandparents.

But I started to feel it coming. I watched his heart rate, I was good at that. I could sense his weakening state. I felt Eli speaking to me. I had the nurse call my husband. I told them I wanted to hold him. Once he was in my arms, my husband arrived. I held him close and told him it was ok. I asked my husband to put a sock on his cold hand and I saw a small jerk. I knew.

In my heart, I knew. The nurses were having some problems with the heart probes and called for the doctor but I knew. And the doctor confirmed it. Sweet Eli who always loved to be in my arms waited to be there, died in my arms.

I thought I was prepared, I thought I was ready. But I wasn’t. I wailed. I cried, I sobbed. I hugged my baby. I cried out his name, cried out, “my baby, my precious Eli, my sweet little boy!” It was the worst moment of my life. I realized that Joey would not have his brother, that they would not have each other to encourage through their struggles. I realized that I, his Mommy, would not be blessed with the presence of this very special boy during her physical life.

It was devastating. We bathed him that night very carefully and then we both held him again. I sobbed. My heart was broken.

We had a beautiful Memorial to celebrate Eli’s life and so many people attended to show their support. That first week after Eli’s death wasn’t as hard as I thought it would be. I was so busy planning the Memorial that I didn’t realize my own heart pains.

I became obsessed with Joey and his eyes. He had a 4th eye surgery for a detached retina and in the end, they could not save his eye. His left eye will have no vision. Another disappointment, another hurdle for Joey to overcome. His right eye, well, we are not sure about yet. He may just need glasses and that is what we hope for.

What I have come to realize is that my heart is heavy. I have tried to pretend that I am ok. I have had to pack up so much of Eli’s belongings. We got a beautiful trunk for all his things. And we have so much twin stuff. It’s so hard. I keep pushing it in the baby room, pretending it’s not there. I wanted my family and friends to understand and have faith in me, to know that I would return to my old self eventually. I’m still not there though.

Sometimes I pretend to be there. The other day I was driving home from an errand with Joey. It was early evening, 7:30pm and the sun was in the same place, the weather was clear, the roads were just empty from traffic. It was the same road I had travelled so many times, the road home from the hospital, home from seeing Eli.

And I began to cry. I told Eli that I missed him and aske dhim if he missed me. I asked him if he would just send me a sign that he missed me a little, that he remembered me, that he knew we were here thinking of him. I suppose he was busy in heaven that day, or perhaps I missed the sign. Maybe God knew I couldn't handle it at that moment and wanted me to concentrate on driving. I have moments like this often.

For the most part, everyone has really stepped up to the plate and been there for us, for me. I needed love and support so desperately. And fortunately, there are new friends and old friendships rekindled that fill a few voids I felt.

I find that I cry a lot and I suppose this is normal. Eli died when he was almost 5 months old. I knew him well, knew his likes, dislikes, his personality. I loved Joey and Eli more than anything, loved the dream of “them” and have had to change my “dream”. I have been forced to come to terms with what I did not ever want or imagine. And it has been the most miserable time of my life. Eli has been gone physically since June 22, 2009 at 9:40PM and as time has gone by, my heart has grown heavier and heavier.

So here I am…

I’m starting fresh. I’m going to try and heal, allow myself to grieve and believe that my new dream does exist and that I can be happy again without sad thoughts of Eli haunting me on a daily basis. I have seen the good and bad in people, I have been judged for my “behavior” as I experience the loss of a child and I have realized who loves me and my family for the realness that we have tried to share with all who are interested.

Many have followed our journey so far and now it is just the three of us physically. I know Eli is there too in spirit and I just…

I just miss him so.

It’s difficult to summarize 6 months of feelings and emotions into one blog. It’s difficult to help one understand the true journey we went through as I did on our facebook prayer website “Pray for Joey an Eli Bonura”. But in the end, it hurts my heart to add to it right now since Eli is no longer with us physically. The updates are all there, from the beginning and anyone is welcome to read. But I need to start fresh.

So, welcome to a fresh start. Meet my family. Meet my sweet loves…my husband Thomas and my precious baby boy Joey. Joey has quite a journey ahead of him. Our whole family does. We struggle with trying to sell our home before we go into foreclosure, we struggle with some who do not support us because they don’t “know and understand” us but we believe. We have faith that God will send us better days. I have always been honest and true, about my feelings, my worries, my anxiety, my faith. This is me, this is who I am.

I know God is still there, waiting for me to be ok again. Meet my baby boy Joey.

Joey is growing well. He is almost 10 pounds now and is getting better and better at finding his little hand. He has a shunt that shows buthis hair is growing longer every day. He gets physical therapy as we prepare for the possibility of cerebral palsy and we are working very hard to make sure he is compensating with the loss of vision in his left eye. He is so precious and sweet. He loves kisses and is starting to go a 5-6 hour time where he sleeps without waking during the night. He is alert and vibrant during the day and the other day, I was lovingly talking to him and he smiled right at me! He does smile often but it hasn't happened again right at me.

Oh how I love my sweet sensitive Joey and I hope that you will too!

Mommy Loves Joey

Mommy Loves Joey