Monthly Archives: June 2012

The calm before the storm

We last left off with the story of Elijah with Ron and I attending the multidisciplinary conference. After hearing all about Elijah’s heart defect and learning our treatment options we were left to process all the information handed to us. As well as choosing a hospital and staff to treat Elijah.

Life moved on, kids had activities, we had work. I had always been a number #1 performer in my sales position and I had moved to 4th since the diagnosis, this was not acceptable for me (the good news was I did accomplish this, while in the hospital it was one of the only pieces of good news I got, however I realized it did really matter). I had to regroup and figure out how to be in the top position again, be a good mom, wife, sister, daughter, friend, and take care of Elijah and myself. The good part of this was my morning sickness had finally subsided after 5 months of throwing up daily, only to be replaced with horrific heartburn.This is just par for the course of how my pregnancies go. I also had to go through the emotions that go along with a diagnosis like Elijah’s. How to cope, fill myself with faith. I threw myself into God’s strength asking him to work through my weak and weary body. I prayed at a new level and I could feel the hope rising in my weak body. Daily I felt better about the future, by no means did I think it was going to be easy but I did think it would all work out in the end.

In January I started getting my medical treatment at U of M Mott Children’s Hospital. I picked a surgeon Dr Richard Ohye, and we met with him, in late February. He looked of Eli’s fetal Eco cardiogram and in his words “It should be a simple procedure relatively speaking”. He was the first doctor that would go over mortality rates. For the first surgery the mortality rate was 5% and all three combined is at 20%. But once the babies make it through they aren’t sure about life in their 20’s and longer, a transplant may have to happen. I held hope that medicine would advance and that something new would come to help by then. I was filled with hope all around, Dr Ohye gave me something no one else could.

I had ultrasound after ultrasound the baby always looked healthy and strong. A little on the small side but he was doing great. I was scheduled to deliver Elijah April 20th at 36 weeks. I had refrained from buying anything for Elijah until February and decided it was time to get started. I bought clothes and bedding, a changing table and pad, a boppy, stuffed animals, lots of hats, and blankets. I bought diapers, wipes, a diaper bag. My mom bought his stroller, and Pat and Ron bought him his car seat, and Mama Roo. We were all ready. The kids were getting excited and loved they could feel Elijah kick and see my tummy move. Ron and I would lay in bed together every night and talk to Elijah, Ron would push on his little feet and he would kick or push his hand away. I would sing to Elijah all day and so would little Ryan Mae. For the first time it felt a little like my other pregnancies. The only difference being when people would say they couldn’t wait to meet Elijah and see him they were so excited all I could think was I was afraid.

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Oh how they grow

I know you are here to follow the journey of Elijah’s life and now death, however today I ask you to read and enjoy the story of my first born son Carter Michael. This week has been a week dedicated to Carter. His birthday was June 13 and he turned 12 years old. It is Carter’s last week of school and with that comes his graduation from elementary school. It seems like only yesterday I was bringing this amazing little boy into the world and oh how he has grown!

Our journey started when I was 22 years old, just a baby myself. Carter was brought into this world under great distress himself. I had gone into see Dr. Maser again for an appointment for blurry vision and swelling. The type of swelling that made it so my Birkenstocks didn’t even fit, YES I know it is hard for me to admit I did wear Birkenstocks. When my blood pressure was taken I was sent directly to the hospital to deliver Carter. I was induced for pre-eclampsia, 13 hours later an emergency c-section had to be performed. Carter’s little heart rate kept dropping during contractions and this was dangerous for him. Dr Maser was called in and had the baby out within 10 minuets. I cried the whole time, I was so scared for his safety and health. He did not come out crying it was silent, I was begging for news. They said he was ok, I cried with relief. He did not score high on his Apgars but he was pinking up and going to be OK. Dr Maser explained Carter’s cord was in a knot, not around his neck but he tied himself into a complete knot and when he engaged it tightened causing the issue. My boy was here, however I was in my own medical struggle with sky rocketing blood pressure I had to be put on Magnesium. If you don’t know about this drug let me tell you, it makes you turn into a ball of fire. I was burning up having to be packed in ice. It also cause double vision and sensitivity to light, I could barely use my arms and could not hold my baby without help. Carter had to be held to my breast to feed him by someone else. After 48 hours on the Magnesium I was weened off and the true bonding started. Carter and I were learning together, he was a colic baby. I had gone into the pregnancy pretty cocky after babysitting for so many years and taking care of my nephews Jacob and Zachary. However Carter was not going to make it easy, he would cry all the time, we all took turns walking him all over on a pillow like the king. Because this was the only thing that could/would console him. I cried that he didn’t like me, I felt like I was a failure. However after a Hospitalization of Carter for and extremely high fever and being lethargic, I never leaving him not for a second during a four day stay at Sparrow, a switch was flipped. My baby was finally well, he was 1 month old and happy! I think we both grew so much during that hospital stay we knew we would always be together. He knew how I loved him and would never leave him, and he loved me the same. It was unconditional love. Carter stills shows me this love everyday. He is not shy about hugging me and kissing me in front of friends.Everyday when I drop him off at school he kisses me with his friends pointing and laughing, he doesn’t care. He comes behind me and hugs me all the time, this boy that is almost as tall as me. He is my protector, he is my hero!

I look at this boy in front of me today and I am so blessed. Words can’t describe the love I have for Carter. He is so strong, happy, loving, kind, tender hearted, responsible, an amazing son and brother. He is dependable, trustworthy, he fills a room with his presence. He is beautiful not only to the eye but to the soul. His spirit is funky, funny, joy filled, if I could ask for the perfect son, I would ask for Carter.

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Moving Forward

It has been 6 weeks since we lost Elijah Thomas. Still just speaking or writing his beautiful name brings so many emotions, joy, tears, the throat tightening, sorrow, love, oh the list could go on and on. I realize I will always feel this way, this is a pain that will never cease it will just become a part of who I am. His loss will help me love more, be more compassionate towards others, he just makes me a better person all around. I realized the other day you never know what the person walking down the street or sitting next to you on a plane is going through.

When I traveled last month I sat next to a nice woman who was pregnant. I saw her reading her books on baby names and child birth. After a while and working courage up in myself I asked if she was expecting. She said yes and it was her first baby. After talking more I told her about Elijah and explained his heart defect, and passing. This was a hard thing to share with a woman so excited about the birth of her first baby, i’m sure she was already worried or not at all and i threw a kink in her thoughts. Things just unfolded, she asked many questions leading to this. After I shared with her my experience she told me the baby she was carrying had a thick Nuchal Fold and they had also found out at their 11 week appointment. This is where it became very difficult I did not want to worry her any worse but this was also what happened to us with Elijah. Everyone knows how our story turned out. We talked about God and Faith. It was such a small world I think God put us together on purpose. Maybe so I could give support or so she had someone to talk to, I don’t know the reason but it happened.

Other things also happened over the week. I worked up enough strength to pack away Elijah’s beautiful nursery. This was the one thing I dreaded. If i even told someone about the notion of packing his sweet bedding and stuffed owl away I would cry. But the time came I knew I was ready I didn’t cry but I folded each item and packed it with care as I played music of healing in the back ground and sang out as I went. The song I remember most was Kari Jobe singing “Find you on my knees”. When I was done I hung the beautiful portraits of Elijah that my cousin Shannon had made for me and that hung at Eli’s funeral.

I am proud of myself and feel like I am grieving in a healthy way and can only say this comes from my faith. I feel God lifting me when I am weak.

I will leave of a few pictures of Elijah’s sweet nursery.

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Anniversary

Today is the 1st anniversary of our wedding. WOW, what a year this has been. Funny how you can start a year with so much love, hope, joy, excitement, anticipation, and end the year with so much loss, and hurt.

Ron and I decided to up our wedding date¬† to June 7th, 2011. This was due to factors with custody, court, etc. We had been engaged and had a wedding already planned for August 19th, however due to other factors we decided to up the date. We were committed to one another and living as a family already so in May we decided to do it in June. We invited just our parents, my sister, Ron’s brother, all the kids, and our neighbors join us.

June came and it was the hottest week of the summer, the weather was in the 100 degree area all week and sunny. We do not have air conditioning in out little Royal Oak 1950’s bungalow, well central air that is. We have two window air conditioner units, but it is just not the same. It was June 6th and I decided to go to the gym at 10pm, after I had put the kids to bed. I was feeling stressed with getting everything done for the wedding which took place in the middle of the week. I had done dinner and homework, I was hot, and trying to keep the house clean because everyone was meeting here and people don’t come to our house very often we go to them. I was thinking about the 7th and how I had to get my hair done, makeup, I needed to take the kids to school and pick them up. I had to get them dressed, do the hair of three little ones as well. So thinking of everything made me stressed!!! The gym sounded like a perfect idea for release. After the work out was over it was just past 11:15 and I went to my car. I started backing out of my spot and was looking out the mirrors when, WHACK! I had run into the cement pillar outside the gym. Oh #&)&$@!!! I got out and looked it was drivable but smashed in. I drove home crying the whole so much for the release. I cried myself up the stairs and told Ron, nothing we can do tonight he said and we went to sleep. I was very glad he was so cool and calm about the smashed car. When we woke I took the kids to school and began the hectic day. I went to Douglas J to get my hair done, and make up. As I walk from one place to another sweat it dripping off me and I am worried my curls will turn into a frizzy mess from the humidity. When I get back home I look in the mirror and I have two black streaks dripping down my face from my mascara melting. I go to my bedroom where the air conditioner is on and at least it’s only 82 degrees up here compared to the 95 degrees in the rest of the house. Ron gets home and I ask him to go get all the kids from school, he does. When he gets back I am running around getting their hair curled which is no easy feat if you know Lexi. I am beginning to lose my patience when everyone starts arriving. I ask for Pat and my sister to help with Lexi so I can get myself ready. I walk down the stairs to head to the justice of the peace and walk into our living room, everyone is dripping with persperation. I can’t help but smile and think I know what I am asking for, for my wedding present air conditioning! Yes I did get one ūüôā

We arrive at the Court house in down town Royal Oak and the sun is shinning down, and it is so beautiful. The wedding takes place and I am so happy to kiss my new husband, everyone cheers and we pop the champagne and have a toast to our new family! We all go out to dinner, the dad’s pick up the bill and I would say it was perfect! I was also so thankful to start our new life and create our dreamed about baby. The future feels so bright like the sun is shinning for us.

Wow, in one year we got married had a reception, lost two grand parents, I got pregnant, we had a baby and lost a baby. Here we are one year later.

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The meeting

We made it through Christmas and the ski trip as a family. Leaning on each other when one of us were low, holding the others hand, praying for Elijah, praying for more strength, praying for healing, crying on the others shoulder, and holding everyone tighter. January 2012 came and with the new year came the Multi Disciplinary conference. Again this is where Ron and I sit with the leading Pediatric Cardiologists, Head of Obstetrics, Social workers, etc. There is a board room filled with unknown people and we only know the OB specialist who diagnosed Elijah. Residents, nurses and doctors sit in with us to discuss what our plan of action is. Another part of the new year is the loss of Ron’s Grandma “Sido”, just two days before the conference. Life is just piling things higher and higher for us.

It is the day of the conference and Ron has left work early and picked me up. We head to Beaumont hospital where we are having the conference, and hold hands as we walk in. I have to have another Fetal Echo that day because they wanted some better pictures of Elijah’s little heart. As his picture comes up on the TV screen in front of me I feel the love filling my heart. He is moving all over and has his little hand resting on his head. This baby is amazing to be growing with half of heart, he is my true miracle. When the Ultrasound is over we escorted into the board room. I have no idea what to expect, but when we walk in it all feels so real and the tears immediately start rolling down my face. ¬† The doctors look a little shocked by my quick response. Ron holds my hand as the social worker brings me a box of tissues. I pull myself together and remember praying for God’s strength again. I also remember thinking how often lately I pray this prayer. Introductions go around the table and it is a total of 10 professional and the two of us. It feels very similar to a group interview. I feel like I am being sized up, can she handle this, will she be strong enough to love a sick baby, will she be able to handle her baby having three surgeries in two years, will she be able to take care of him at home, is she mentally ready for what lies ahead????¬† The pressure is mounting and they go over Elijah’s Diagnosis again, which I have studied inside and out in the two weeks leading to this day. After they ask if we have questions. Ron is not like me in this way he waits to hear what the doctors say, or waits for me to give him the information. I have explained this to Ron and we have no questions.

Next the head of Obstetrics hands it over to the Cardiologist where she explains the treatment of Elijah. She tells us the surgery and treatment options, she is kind and warm and makes me feel safe, and cared for. When she is done The head of OB takes it back and then explains the three options we have.

  1. We deliver Elijah and he under goes a triple set of open heart surgeries. The 1st at 3 days old, the 2nd at 6 months and the 3rd around 2-3 years of age. Each surgery is extremely dangerous but if he makes it through all three he has a good chance to live. Or to live into his twenties where he may have to have a heart transplant in order to live.
  2. To deliver Elijah and do no major medical intervention and watch him slowly die. This is called compassionate care.
  3. To abort Elijah. This is considered a late term abortion because I am 21 weeks along now.

As the words come I am sobbing, and thinking “abortion” I can not do that!!!! Ron knows immediately why I am sobbing and very strongly and assertive¬† he tells the doctors that abortion is not an option. He tells them to never ask that again. He is so aggressive in our behalf he tells them to put it in the file so it never happens again. I am relieved and add another reason why I love my husband so much¬† to my list, thank you God for this man! We know the 2 options left for us and we know we want our baby to live. We have hope a fix will come in the future and Elijah can grow past his twenties and have a family and grow old. We have Faith.

In the end we leave the conference with a plan and again drive to Lansing after a long day at the hospital. We have to get to Lansing for Sido’s visitation and funeral. More prayers for loss, prayers for healing, prayers for our family, prayers for more strength. No room for breathing, only room for moving forward with what is on our pile. Moving forward for our children, family, and love.

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