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 🙂

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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Ron

It is hard to pull up the next part of my memories about what occurred after finding out about Elijah’s diagnosis of Hypoplastic Right Heart. I do have a few very vivid and life changing things I can write about. I think I was in shock so much that I can’t remember what I felt well enough to explain it at this time.

When Ron and I left the hospital December 22nd after having the level two ultrasound and finally the diagnosis we had to drive into Lansing. We had made plans with Ron’s cousin Tracy, Todd and their family as well as my sister, Alex, Nana, Chris, Cherri, and Joan, Mike and all the kids (something like 25 people). We were all heading to Peacock road tree farm to see Santa and ride the magic train. We were suppose to pick Lexi up on the way through to Lansing but the Ultrasound ended up taking nearly 6 hours and NO ONE expected this. Nana went and got Lexi to go who was wondering why he dad wasn’t there.I was busy calling everyone who was worried because they hadn’t heard from us in the 2 hour time frame we had been told. I made phone call after phone call telling our devastating news and fighting back tears with each conversation. Twenty minutes into the drive and between phone calls I looked to Ron who was sitting in silence with tears streaming down his face. I have never seen my husband cry! I have seen happiness, joy, frustration, anger, peace, comedy, anxiousness, blissfulness, exhaustion, but never this! This was sadness, this was sorrow, and this was fear, to name a little of it. Funny how as husband and wife we have never completely melted down, or lost it at the same time. Typically I am the on showing emotion and he is the one providing comfort, or calming me. I remember thinking here, I need to bring him hope, I need him to believe in Gods power to heal our baby through medicine. I sat and thought of the perfect words for what felt like 20 minutes when it actually was 30 seconds. I finally said they will help him Ron, he can make it and grow to be a normal little boy. He said no he wont, I had so many dreams for him and myself. I had a picture in my head how he was going to be and now it’s gone. I know it sounds horrible Ron said but I wanted to watch Elijah run and play, to play football, to live a healthy life, to grow old, and he wont. This is where I am finding words again hard because I wanted all those things too, I wanted to hold my new born to my breast, I wanted to never let him go through pain, I wanted peace , I wanted his little body cuddled into mine, I wanted to watch him play with his siblings and I was feeling all the same emotions as Ron, but I have to be the strong one. So I say they can fix him and yes he wont play football, and basketball, he wont be an elite athlete, but you weren’t either and you were loved. I say he will have to be in pain but in the end he will be held and raised by two parents who adore him, I say he will play with his siblings and they will laugh and we will all be in love with his smile and laughter. I say we love him and he isn’t the baby we thought we were going to have but he is the one that is in me and the one god wants us to have. I start to cry myself and say I love him and I am thinking please love him too I need you I can’t do this alone. Ron says I love him to and I am sad for him. We hold each others hand and cry I rub the back of Ron’s head and lay across the counsel of the suburban and give him the love, strength and comfort I can.

We make it into Lansing where we are faced with all of the kids, and all of our family. The kids don’t know anything is wrong, but the family does. We have to wear our strong faces and try to have fun with our children who are present, but it is hard. We force smiles and laughter, but in our heads we are fighting with every emotion. Also Ron’s Sido is in Hospice and is not going to make it longer. Christmas is just 2 days away and it is a time to celebrate the birth of our Jesus, with church, food, presents, family and it has never felt so hard.

We go to hospice everyday to see Sido and watch her as she fights off death. Ron comes in and sees Sido where the first words out of her mouth while looking right at him are “Ronnie’s going to have 5 kids!” Everyone is amazed by this, his grandma rarely is talking these days but finds the words perfectly clear to say this statement. She is amazed! If you know Ronnie I think you know no one ever expected him to find so much love and joy in a large family. Every time we came into the room even when she hadn’t spoken in days she would say “5 kids”. We would all laugh and say yes he will have his hands full. I remember one night sitting on Sido’s bed and I was giving her a massage she loved this! I laid my head by hers as I rubbed her dying body and said Sido I know you know I am pregnant, and I have a favor to ask of you, will you please watch down on Elijah for me? He is very sick and has a broken heart and needs you, and if he can’t pull through will you hold him for me? I have tears dripping down my face as I ask this. I believe she is. One last note the last words Sido spoke were to Ronnie. He had bent down by her ear and said Sido it is Ronnie I’m here and I love you and he was holding her hand, she said so everyone near could hear her “I love you”. I also think she knew Ronnie needed that as much as she did.

Forgive my multiple errors I’m sure are in this post. It was a hard post to write for me. It has been 1 month since we lost Elijah, and I felt the pain of this so great yesterday. I was flying in a plane and looking out at the clouds and finished reading the book Heaven is Real, and I was thinking heaven is real and Sido, Nunu, grandpa Parry, Grandma Lothian, and his big sister are all taking turns with Jesus and God holding our boy. To remind you at the funeral I picked the song Son of God to have sung, because we had played this in the hospital for Elijah and when he took his last breaths of life on earth. I know God had adopted Elijah as his son and is safe. I am selfish that I wanted him here with me longer, and I wanted to hold him but he is in the best place.

A post to the music link.

www.rivwarehouse.com

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Do you remember?

So life sometimes has many ups and downs, we get caught so often in the down part it’s hard to remember the up parts. Today I was reflecting on life and feeling sad and weepy, I was driving in my car and remembered a story that by the end of the memory had me laughing out loud to myself. To my sister Wendy and cousin Leanne do you remember when we took kick boxing?

Let me refresh your memory. Wendy had a genius idea we were going to get in shape and have fun doing it. She had heard about a kick boxing group class at a local karate studio, and we could try it for free! It doesn’t get much better than that…Right? So the three of us walk into the class and I’m feeling pretty cocky at this point. I think I’m in pretty good shape and this should be easy for me. If you know my personality you know I’m competitive, like to stand out, give it my all, Full of myself, so many additional things I could say here. However this is only in the exercise world, that I feel so confident. I am also good at laughing at myself, making a fool out of myself, and finding humor in things. Back to the story, class starts and we are bouncing, punching, kicking, and squatting, I am thinking easy, piece of cake.  I look in the mirror, I see Wendy and Leanne are cracking up at themselves trying to stay with the class they are either one step behind, or punching with the wrong hand, we are all giggling now. The sweat starts to trickle down and we are feeling good. We are tired and after 100 punches my arms feel like they can’t throw another punch. That’s when I hear it “OK warm up is done”. I look at the clock, and then at Wendy and Leanne, we all have the same look and it says only 30 minutes longer. I think to myself why did I try so hard, I exerted all my energy trying to look good, or make it look like I was a natural…WHAT IS WRONG WITH ME!!! The punching bags come out and along with these come the words that hurt my ears “YES SIR MASTER CHUNG”. Yes that is right we have to answer the instructor with every question or direction with “yes sir master Chung”. The woman I am finds this very hard to stomach, however we have Leanne here to make us die with laughter every time we have to say the phrase, this makes it tolerable. We are punching and kicking hard with bare feet and hands. I think blood is going to start leaking out of my knuckles at any point. Then the next thing you know master Chung is in your ear yelling harder, faster, higher, lower “yes sir master Chung”. Then you spot the smiles on the others faces when you are under the pressure of Master Chung. I am staring at the clock covered in sweat and think the hour is up, THANK YOU GOD!”. I am wrong master Chung tells everyone to line up so we do. We still have half an hour class. Yes that is right, an hour and half long….grrrreat. Now all I can remember next is grown women having to do the crab walk around the entire studio. We are laughing so hard and Master Chung does not appreciate the humor in this. We go a few feet and fall,  is a lot harder than it was when you were a child trust me here. It is also not nearly as pretty and graceful. I am thinking great next we are going to have to do the wheel barrow race. We make it through the humiliation and amazingly hard workout in one piece, and to cap it off not only do I have to say “Yes Sir Master Chung” now I have to bow down to a little man.

Few glad was over…right? No because now is the sales pitch by Master Chung himself. Guess what Wendy signed up and proceeded to be harassed and stalked by master Chung if she did not attend class at least three nights a week…Wendy all I could and still can say to you for this is what were you thinking?  To end this story let me leave you with a few memory’s. Wendy and Leanne do you remember not being able to move for a full week? Do you remember not being able to squat to sit on the toilet, and when we did finally make it to sitting position how bad it hurt when we sat. Do you remember how we couldn’t walk down stairs, or Put on clothes, or buckle our bra’s? Do you remember wanting to cry from the pain but wound up laughing and calling each other to see if the other one felt equally as bad? When I reminded Wendy of this story today all she could say is “I had no idea shins could bruise from the inside. I remember being black and blue for weeks. First case of Plantar Fascitis. So much pain to look good, thank you master Chung”.

Laura, do you remember the slip and slide, or my foot needs hot coco?

Lesa, do you remember falling through the ice into 12 inches of water but happened to get fully dunked?

Sandee do you remember the flip in kick line?

Sherrie, do you remembering making us write sentences for sneaking out?

Sheila, do you remember being the “responsible one” so you drove us to toilet papering?

Mary Jo, do you remember the smell at the girls dance class?

Jenny, do you remember toilet papering the Kampers?

Michelle and Jenny, do you remember me showing you the splits at my 30th birthday party?

In closing I want to say, I am glad for all the “Do You Remembers” in my life. They pick you up when you are down.

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December

December of 2011 came and went. With it came the hustle and bustle of the holidays, school party’s, family get togethers, shopping, trips to see Santa, doctors appointments and diagnosis. Not only did I have the long awaited level two ultrasound scheduled, Paige had her colonoscopy and endoscopy. We were finally going to have some long awaited news for both kids. In December it was hard to worry about what was happening with the pregnancy with how busy our lives were. I was re-working Paige’s entire Diet and weighing her everyday and cheering when no more weight was coming off. A family trip was scheduled with Wendy, Alex and their family to go skiing. We do this every year and everyone was looking forward to this relaxing family time. We also bought a Suburban to fit our ever growing family, we said this was Elijah’s early Christmas present, but I think it was more Ron’s.

It was the day to take Paige for her day of procedures and she was not a happy girl about the IV or the medication. I had just won a New IPad from work and brought this for her to play while in the hospital, I held her on my lap and sang to her (music always makes us feel better, when we are scared, happy, sad, waiting, driving, we sing). Paige was taken into the procedure room, and we were able to stay with her until she fell asleep As she was going under I could see the fear in her eyes and I continued to sing in her ear so she would relax. After Mike (my ex husband) and I were taken to a waiting area and  it wasn’t long until the Doctor came out and told us Paige had Crohns Disease, her intestines where filled with blood he couldn’t even see. The one thing we did not want to hear!!! Ok so here we go another overhaul of the cubbards and more medical education. I will never forget the doctor coming into talk to Paige and saying, “You will never ever eat fast food, or junk again. Unless you want to wear a poop bag” can you say wake up call for everyone.

Three days later it was the long awaited ultrasound. However the weekend before while in Lansing visiting our family Ron’s Sito (means grandma in Lebanon) was admitted to the hospital and was not doing well. Ron and I were sent into the small dark ultrasound room where my bladder was ready to burst with fluid and I was afraid I would wet my pants when the technician started the ultrasound. We saw our baby boy Elijah! He was moving like crazy and making it impossible for measurements. As she would try to measure his brain circumference he would shake his head no, if she try to measure his abdomen he would flip to his back. This behavior was the beginning of Eli always misbehaving during Ultrasounds and trust me we had many! The technician had me get up and do jumping jacks, walk the halls, roll back and forth to get him to change positions but he was always fighting back. 1 1/2 hours later we had all the measurements and so far he was perfect! Next was the heart scan and fetal echo-cardiogram.  This is when I knew something was wrong. Our technician who had been very interactive with us up to this point became silent, I would ask questions and she wouldn’t answer it completely, I could feel the atmosphere change. She finally told us she was having a hard time getting some of the pictures and was going to see if the doctor would come look. 2 hours later, a text from Ron’s dad saying his Sito was being moved to Hospice, and a small tension filled argument between Ron and I and the doctor finally came in. He moved us to a different room and began to scan to watch blue and red fill and empty out of Elijah’s heart and then he turned the machine off and said the words “The baby’s heart is abnormal”. My heart sank. He told me to get cleaned up and he would meet us in the conference room. I got off the table in a daze, I cleaned my belly, and got dressed. We were escorted to the little room with couches to sit on. Ron and I sat close holding hands. The doctor drew a picture of the normal heart and then explained what Elijah’s looked like, basically crossing half of his heart away. Then telling us the words I will come to study for 4 months everyday “Hypoplastic right heart”. Our life changed that moment.

We left and it was the first time I ever saw Ron cry. His baby boy the one he dreamed of was given a possible fatal diagnosis and even if he did make it he was never going to be the boy we had been dreaming of raising. Not the boy who played football, and basketball, not the one I could hold when he born, not the one who would out live us. We started to mourn the baby we thought we were going to have and accept the baby boy growing in my belly, the one who kicked me, and hated ultrasounds, the baby who was awake at night and kept me awake, the one only I could feel, the one I sang to all day in the car while working. He was the baby I was in complete love with still!!!

These ultra sound pictures were from that very day December 22nd 2011.Image

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“One of those days”

Today has just been “one of those days”. I woke up to the kids fighting with each other, it was gray outside, I had the baby I my mind. I use to say in the hospital with Elijah, I knew how my day would go by the weather. When it was sunny Eli had a great day proving he was a little fighter, and full of spunk. However when ever it rained outside or was gloomy he had a tough day. The day of his cath lab, his surgery, and the day he died it was pouring out. When I walked outside the morning of his surgery I was disturbed by the weather and spoke those words words to Ron. Like Eli does bad when it rains, Ron dismissing me as silly maybe. However I felt it in my gut and when we walked back to the Ronald McDonald house after Eli was placed on ECMO I said “I knew it was raining”. So the morning I walked upstairs from the basement of the Ronald McDonald house and I saw how hard it was raining I told my mom what I had experienced with the weather while we were in the hospital, and I knew it would be raining. To tell the truth almost the whole week rained after Eli had passed, up until his funeral. For the funeral the sun was shinning and it was very warm. However about 5 hours after the funeral it was the large storm that encompassed the state of Michigan, you know the one. I told Ron and the kids later I thought Elijah was shinning down on us during the funeral with acceptance from his heavenly father, however later god was sad, he was crying for us Elijah’s family on earth and our sadness. He was crying the way I did in the hospital when I had to hand Elijah over to Jenny the nurse. It is the kind of sob that is heartbreaking, gut wrenching, earth shattering. The kind I pray I never have to cry again or pray none of you ever have to experience. Even now the thought of that moment makes me heave with tears.  It has been just “one of those days” however I do have hope the sun is starting to come out and shine through the clouds. I believe it is looking for me 🙂

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Life as normal

So we left off in the Elijah story with finding out that Eli was perfect chromosomally and that he was a boy. Next we had to wait until I was around 20 weeks gestation at this point I would be receiving what is called a level two ultrasound. This type of ultrasound is more-detailed and gives the doctors crucial information about what’s going on with the baby. For example, it can measure the size of the fetus and evaluate your baby’s major organs to make sure they’ve formed properly. I had received the CVS results in mid November and had to wait until December 22nd to have the next set of news.

Life went on as normal as possible, for everyone living in the house they went to work and school, hung out with friends, watched TV, and played. I tried to do this also, let life go on. However unlike ever before in my pregnancy’s I was constantly worried. I was worried everyday about having a late term miscarriage, I worried the Cystic Hygroma was growing and that he would be covered in this sac of fluid and it would kill him. I was constantly calling to run any test that would help us find out any information about the baby boy. Now knowing the baby was a boy and how happy Ron was I felt extra pressure to carry the baby the best I could and give him the son. I would pray for relief for anxiety. I prayed for the baby’s Cystic Hygroma to shrink. I prayed for the baby boy to grow into a happy, healthy adult. I prayed his little heart would continue to beat. I prayed for strength, I prayed for sleep to stay strong. Again prayers were never ceasing. As I drove for work, when I ate, when my mind wanted to be still, in the morning at night, I prayed. I didn’t let anyone know how scared I was. I was afraid to go to the doctors alone. At thanksgiving my Aunt Camille asked how I was doing, she had come close for a little hug and it was only the two of us standing in the kitchen at my other Aunts house. She was by my ear and just warmly asked “how are you? I have been thinking of you and the little guy.” just this simple question and thought made me start to cry.I said I was OK, which obviously I wasn’t as tears stung my eyes and dripped down my checks. The lump in my throat so great words could not come out. She hugged me and didn’t ask or say anymore, then turned and walked away. I stood by the coffee pot wishing the tears away so no one else would see me. I felt alone , I felt like no one knew what was going on in me, I hadn’t even fully shared this news with Ron, Wendy, Shannon, or my mom. Yes  they a knew just enough but not all of it. I wanted no one else to worry, I wanted everyone to act like I was carrying a healthy baby just like my other three had been. I didn’t want people to act or think I was different, so I kept it all in.

Wendy went with me to a quick scan of the baby at Dr Maser’s office. I asked the ultrasound technician to measure the baby’s Cystic Hygroma at this appointment. I was so scared what we would see, immediately I could see it was smaller. I said it looks smaller! The technician agreed it did but she was measuring. The hygroma had measured a 5.2 in length, she told me it was now a 3.8.  I cried, and cried, I turned to Wendy and cried while I looked at her and said it is smaller. The baby was wiggling, kicking and turning all over he looked completely healthy. I walked out of the ultrasound room and my friend Bridget who was also pregnant sat in the waiting room and I was so proud I showed her the pictures from the ultrasound. I felt like I could name my beautiful baby now!!!

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Another sick baby

So during the pregnancy and worry about Elijah we had another diagnosis and scare happening as well. Paige my 8 year, red head, who is the sweetest, most kind little girl was also struggling with health. Paige was my other true Preemie, she was born at 35 weeks gestation just like Elijah. It was an emergency c-section with Paige because of what is called a window in my Uterus. If the window breaks open it causes death to the mother and baby. I presented in severe pain and had no time for steroids, so our girl was delivered. When Doctor Maser pulled her out of my belly he said, “It’s a boy with bright red hair”. I was in shock when this was announced because I had always wanted a red head I use to say this all the time while growing up. The other part of the shock was I had a beautiful little girl nursery decorated at our new home, as well as a closet filled with beautiful girl clothing. I started to panic on the operating table when Mike bent over and said Doctor Maser was only kidding. The baby was a girl, but he wasn’t kidding about the red hair. Our Paige Marie was born and big for being 35 weeks along weighting in at 6lbs 5oz, and was 21 inches long, “HOLY COW!!!” After the initial stats of Paige she was whisked away and Mike followed her while I was taken to recovery. Hours later, after many questions, to my mom, and nurses about how the baby was I found out Paige was struggling to breath. She had fluid on her lungs as well as immature lungs do to her early arrival. I was so scarred this was truly the worst thing that had ever happened in my perfect trial free life. I cried and still had not held my baby, someone finally wheeled me into the room where Paige was in a breathing tent getting oxygen, while the pediatrician looked her over. I delivered Paige at night so this was now around 1am. The doctor told us they may have to transport Paige to Sparrow where they were more equipped to take care of preemies that are ill. I was taken by wheel chair to my room where I threw up through the night and cried the prayer that you all know I pray “When I am afraid I will trust” I prayed this all night not sleeping a wink. I even attempted to wheel myself back to Paige as Mike slept on the cot next to my bed. I was caught by the nurse who did take me around 4 am to see Paige again. She was heaving for air to enter her lungs and I could see how hard she was working. After being taken back to my bed, morning came and with morning came doctors, they told Paige indeed was being moved but I had to stay for release. Heartbreaking again for me. Paige went by ambulance to Sparrow Mike following behind, I was alone and scared. Mike would stay with Paige all day then come and sleep next to me at Ingham. Before Paige left a lot of scary things were explained and I had to sing papers for treatment since I wasn’t going to be with her. The doctors explained that these procedures would most likely never have to happen but they wanted to be prepared just encase. Guess what, in the middle of the first night the phone in my hospital room rang and we were told Paige was unstable and they had to but in a chest tube, and put her on a ventilator. Mike immediately went to Sparrow but I was left by myself again, scared that I was losing my baby girl. Morning came and with it came a call saying Paige was stable. When Dr Maser came for morning rounds I begged to leave and see my baby, he said that if my blood counts were OK he would discharge me. Later that day I was discharged and made to see my little buttercup baby. I was wheeled next to the issolete where Paige lay, I bent down and just started singing “why do you build me up, buttercup baby, just to let me down and mess me around and worst of all you never call baby when you say you will, but I love you still, I need you, more than anyone darling, more than I have from the start, build me up buttercup don’t break my heart”. From that moment on Paige started getting better, she just needed her mommy. 2 weeks later she was released from the Hospital.

Fast forward a few months later Paige has weird lumps all over her leg, I ask the doctor what these are and I am dismissed. But I know they are growing and she has more I stay on the doctor and finally get a referral to a dermatologist to have them looked at, after a biopsy we found out Paige has a strange disorder in which she grows hemangiomas through her sweat glands, 3 surgeries, 6 MRI’s and countless appointments later we seem to have gotten this under control.

Since September of 2011 Paige was losing weight at a very fast rate. She was not feeling good, and having constant stomach pain. Paige had lost all energy, and could not play with friends, and would hardly get off the coach.I took her into the doctor where we saw she was down to the 7th percentile for her weight and everyone was worried. We started to test and do a lot of them, from blood work to fecal test you name she had the test. It was not until December that she was finally diagnosed with severe Crohn’s Disease. It is a daily struggle for her to eat right and take her medicine, but she is on the mend.

It is awesome to see a 8 year old face such a difficult situation with such grace. She is faced with kids at school eating all the food she loves and not being able to participate. Or to see when she doesn’t have the same energy as other children because her body doesn’t/can’t absorb nutrients. She still is happy and filled with joy and thankful for her little life and family, she prays every night for a cure to Crohn’s Disease. I love my buttercup baby.

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