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Sunday, October 31, 2010

Empty Arms

"An angel in the book of life wrote down my baby's birth. Then whispered as she closed the book "Too beautiful for earth".

Every day it follows me. The deep longing to hold my little Caleb. To feel the weight of him within my arms, the perfect way he fits just so. I only had the chance of holding him once while he was alive. But it's just this feeling... missing him so much and knowing that I will never hold him again. I remember the weight of a car seat, making your arms tiresome after holding it for periods of time. The rocking of my arms to soothe cries, the motions you go through to keep your baby content. I want that.

Saturday, October 30, 2010

What Could Have Been

So many things come to mind when I think of what Caleb would have been like growing up. Would he be impatient like me? :) Like sports, trains, cars? How long would the reddish tint to his hair stick around? What baby foods would he have loved? Would he have loved his soothie as much as his sister did? Tv shows? What would have been his first word? Realizing that I'll never know any of this, and it's all speculation, really hurts. Makes my chest tight, my eyes water, and my head hurt.

Caleb Thomas. He was perfect. I always had a somewhat peaceful feeling, even as he was wheeled into that 1st surgery. I don't know why, or what that meant, because he's not here with us. It's still hard for me. Babies are not supposed to die, just not the order things are meant to go. I still have anger, I admit that. Looking at all the criminals, addicts, all those that live so long, and don't even deserve one more breath. All the people that hurt their children, and do not deserve them at all. I have anger.

In those 3 days that we had with him, we were already used to how our life changed. The beeping of the machines, all the wires, driving the hour to and from the hospital, we were ready and more than willing to do whatever we needed to do. I would give anything to be able to give him one more kiss, one more touch, one more I Love You.

Thursday, October 28, 2010

My Grip on Grief

It has been a rollercoaster of emotions. One minute I can be fine, and the next I am bawling into the pillow. I'm aware of some of the emotional triggers that bring me to unexpected tears. The smell of Dreft. It brings me back to washing some of his blankies before my induction, preparing for our little boy. Certain songs. Music has always affected me, and there are some songs that just bring forth all my sadness. Hearing a newborn's cries. That just explains itself. I pretty much just numb myself when going out in public. It's nearly impossible to avoid seeing a baby, or the newborn section, or a pregnant woman. That way, I won't get affected as much.

I've always used writing as a way to pour out what I'm feeling. But with Caleb, it's been hard for me to get some poems started. Working on it... just been hard. I have felt anger and sadness before, but nothing at all that can even compare to this. Ever since our first miscarriage, my whole outlook on life changed. Things that used to seem important, don't matter at all. A part of me will always be grieving for Caleb, until I am with him again.

Through the eyes of a 3 year old

Throughout our pregnancy with Caleb, Kailey couldn't have been more excited. Always kissing my belly, saying hi to brother, and even feeling his hiccups. We knew he would need to be in the hospital, and just explained to her that after he was, he would be home with us. We wanted to bring her to Cincinnati Children's to visit him the day after he was born. But when she came to see me, one look and she freaked. Not sure if it was my iv, hospital gown, hospital setting... probably all of it combined. We decided that she was not ready to see Caleb, with all the machines and wires. I wish she had the chance to meet him. I think about it everyday.

I immediately set out to find a book that we could read to her, to help her try and grasp the reality of his death. We found one, and I think it has helped. From time to time, she will say that she misses him, or point to his picture on the wall and say how cute he is. Sometimes she mentions something about him being in the hospital, or asks where he is. It's tough, but she's doing good.

What hurts the most, is that she doesn't have the baby brother around that we eagerly discussed all these months. Her big sister shirt sits in her closet. I find her in his room, playing with his bibs and diapers for her baby dolls. She would be such a great big sister, she has so much love for him.

Whenever she sees me sad, she tries to cheer me up. Works everytime. :) She gives me the strength to face each new day. Even though life feels anything but right, Kailey fills me up with hope.

Wednesday, October 27, 2010

Liberty Campus

Just got back from getting our blood drawn for genetic testing. It is to find out if Kyle or I have a duplication in Chromosome 15. The results will take a few weeks. More waiting. My hope is that by Christmas, we will have a concrete answer for Caleb's heart defects, and for our first miscarriage to have heart defects as well. Lots of patience. :)
In the mail today, we got a package from Cincinnati Children's, from the bereavement manager. It was really nice of them. They sent a card to us, and a bunch of information about support after a child dies. Just meant a lot to me, for them to take the time out to do that.

Monday, October 25, 2010

Chromosome 15

We are in the process of genetic testing right now. Our genetic counselor has been super nice. She called us today to discuss the micro ray test that was done with Caleb's DNA. We learned that a little piece of his Chromosome 15 was duplicated. (A microduplication.) Kyle and I will be going in soon to get our blood drawn, so that they can look at us, and see if one of us has a duplication as well. If one of us doesn't, then they might do an echo on our hearts, to see if possibly something is different there. We don't have any concrete answers yet, but it's good to get information. This is all we know for now. A long process, but just hoping to get to the bottom of this.

1 Month Ago Today

You would be 1 month old today. It feels like just yesterday that you were born, and at the same time, feels like 5 years has gone by. Each day passes slowly by, and time is pretty irrelavant to me. The only thing that keeps us somewhat on a sleep and eating schedule is Kailey. She sure has been our rock. Forcing us to get out of bed and face each new day. Filling us up with laughter as she spins around the house, sings into her microphone, and attempts to do the splits.
Fall has always been my favorite time of the year... the colorful leaves, and the upcoming holidays. But now it's marked with the loss of our baby boy, and I don't even want to think about Christmas. Walking through the stores, seeing the Halloween baby bibs and onesies, and wanting to buy one too. No more baby stuff to buy. It's so depressing.
I go into your empty room, where your urn sits upon your changing table, all your papers in the crib. At this point... we are waiting. Waiting for autopsy results, waiting to see where we get with genetic testing, and waiting for the invoice to be complete so I can make the drive to Cincinnati. (To get all your medical records.)
Today, my emotions are all tangled up. I miss you so much that it hurts.
All my Love,

Sunday, October 24, 2010

Looking Back at my Pregnancy with Caleb

It truly is amazing. Growing another life inside of you, hearing that heartbeat for the first time, seeing them on the ultrasound screen. My pregnancy with Caleb began with full blown morning sickness. It got so bad that I would just lay on the bathroom floor and cry. I was put on Zofran, and it was great! :) Back to some kind of normalcy, I could keep liquids and food down. Besides that, it was great. I ate all the time, could sleep, and didn't even feel as big as I
was. LOL. Physically, it was good. Emotionally, it was hard. From the first moment of seeing that second pink line, until... well, the worry never left my mind. Caleb was our 4th pregnancy. The fear of losing yet another baby was pretty strong. ( We had Kailey no problem. Then, we lost Noah at 12.5 weeks. Didn't find out he had no heartbeat until 14 weeks. He had heart defects. Next pregnancy after him, we lost the baby at 6 weeks. Both were missed miscarriages. All in all, 3 D and C surgeries.)
We learned about Caleb's heart at the 20 week ultrasound. We also found out it was a boy!!! :) The day began with high hopes for great news on his development, and quickly spiraled into panic for me. I just couldn't believe it. His diagnosis changed at least three times, from initially TOF, then to TGA, then to possible HLHS, along with other issues. Those hour long cardiologist appointments were pretty nervewracking. I just wanted him fixed. Looking back, the ultrasound techs and nurses at my appts were great. I began coming in weekly, and we would joke about his weight and those chubby cheeks on the screen. Lots of hugs and encouragement, and telling me I was doing great, doing everything I could to grow him big and strong. "Everything looks great, besides his heart." I heard that too often. How do you reply to that, much less give them a smile? You just nod your head silently, thinking you must be in a dream.
Coming up on November 9th is my 6 week dr. appointment. And yeah... I DON'T want to go. Not one bit. Don't want to walk into the building, where the last time I was there, Caleb was thriving inside me, and we eagerly discussed my induction date. Don't want to sit in the waiting room, watching others with their babies, or swollen bellies. Don't want to see the nurses, or look at my dr's sad expression. There will be tears, it's probably unavoidable. Just going to be a long day.

Friday, October 22, 2010

The Magnitude of our Loss

I feel so empty without Caleb. Last night, I designed some announcements, and can't wait to order them. His life here on Earth was 3 short days, but he was our baby boy. Will ALWAYS be our son. What floors me is that some have not even acknowledged the loss of our child. People that I thought would be the first to show that they care, have yet to say a single word. Through all this, I have been awakened to who truly loves our family. And your thoughts and prayers mean the world to us. :)
This is not something we can just recover from, or get over, or forget. This pain is so deep and strong, it will always be within us. Someday, I might be able to smile and truly mean it, or laugh with a sense of joy. But right now, that's just not how it is. I know that I will never be the same person I was before sweet Caleb became a part of our family.
To be completely honest, I still have anger. Immense sadness, and yes, anger. There are just so many emotions, it gets overwhelming. To be pregnant from the end of January until September 27th, it feels so strange to not only, no longer be pregnant, but to also not have him with us. Lots of hugs and kisses to my sweet angel.

Thursday, October 21, 2010

To my dear Caleb

I wrote this letter to Caleb 2 weeks after his birth.

Dear Caleb,

You would be 2 weeks old tomorrow. I would do anything to bring you back to us. 3 precious days is all we were given with you. I'll always remember everything. The way you smelled, your skin so soft, you were absolutely PERFECT. You certainly surprised us with a fast labor and birth. :) You had your hand against your cheek when they put you on my chest. I loved your cute nose.

Our world has been stopped. It feels like the sky should be black, and everything be still. All the little things that used to matter, have no importance anymore.

I never got the chance to change your diaper... or feed you. Now the tears really start to fall, as I think about all the things we won't get to share; all the things you won't get to see. Late night feedings, stroller walks, bathtime, getting you dressed, you being in your room, car rides, you growing up, you meeting your big sister Kailey. We will never experience you being at home with us, playing in the snow, being rocked to sleep, all the milestones and firsts.

The only time I got to hold you when you were alive was on the day you passed. Right before you went for surgery. I never thought it would be the last. You were hooked up to so many things. Once you were in my arms, you were sleeping. :) It felt so good to hold you.

When we were told that you were no longer with us, I completely fell apart. I wanted to scream, kick, throw up, make it not true. The shock and numbness. Holding you for hours- you still had your smell. I didn't want to lose that. You were getting colder, but you you were still just as perfect.

You are the strongest person I have ever known. Such a fighter, you fought your absolute hardest to be here. You showed me how precious and fragile life truly is- every moment of it. You changed my life forever, and you will never be forgotten. You will always be my son.


Tuesday October 12th- Caleb's Memorial Service

Kyle, Kailey, and I had a private memorial service for Caleb at the funeral home. It was a bright sunny day, which felt so wrong. It should have been storming, with relentless cold rain and dark skies. As soon as we walked in and were brought to the room, I saw it. Caleb's precious urn. Sitting beside him was 3 beautiful blue roses, sent from my parents. 3 perfect roses, for the 3 perfect days he was alive. We brought 3 balloons with us to release in caleb's memory. 2 blue and 1 white. We set them near the wall, and sat down together. The memorial dvd made for Caleb was about to begin. As soon as it was turned on, the tears started. There are no words to describe it. It captured our few moments shared with Caleb, showed our raw emotions, reminded us of his strength. Seeing him on the screen brought me back to being by his side. His cheeks, the softness of his skin, his sweet smell, his hair, ticklish toes, sweet nose.

We wrote to Caleb on the balloons, messages from us. Kailey drew him an armadillo. :) That's what she told us, and it was so sweet. We released them, watching them go up into the sky. We watched until we couldn't see the tiny specks against the blue sky any longer. I buried my face into Kyle and just cried. I would do anything to have Caleb here. To have him meet his big sister, to hear his little snorts, to touch his face and kiss him. We love you Caleb. More than you'll ever know.

Wednesday, October 20, 2010

And Isn't it Ironic...

One of the hardest parts after Caleb's passing is dealing with those that are unaware. Getting a call from the lactation consultant a few days after, asking me, "How are you and the baby?" Getting a call from the Ronald McDonald house the night after he passed, telling us that they now had a room for us to stay in. Receiving his social security card in the mail. The formula samples, baby coupons, newborn advice emails. It's to be expected, but that doesn't make it any less difficult to handle.

Going down to the Montgomery County Vital Statistics to try and get his birth certificate, was so surreal. I know I have used this word before, and it really does fit how this all feels. Like it's a dream. Having his death certificate sitting in his crib, with all his belongings from the hospital, is pretty weird. His room is still all put together, with every diaper in place. It's where I go to think about him, write to him, cry, and take a break. I find Kailey in Caleb's room a lot. It seems to give her some comfort as well.

I love this picture because it looks like he's smiling :)

Tuesday, October 19, 2010

Thursday night, September 30th- our perfect angel went to Heaven

Kyle and I went down to the cafeteria, so excited to see our little fighter! Tried to eat some food, and stared at the clock until we could go back up to his floor. NOTHING could have prepared me for what happened once we stepped out of the elevator. Usually, we show the receptionist our id tags, and are buzzed through the door. That didn't happen. She said, "Oh, we've been looking for you." Then she got on the phone, and told us to take a seat... we were so confused. A lady came out to us, ...nurse? not sure... and a chaplain too. The lady sat down and said," Things aren't looking good for Caleb." Those words are forever burned into my memory. We didn't understand what was going on. He had gone through surgery just fine! Then Dr. Ryan came out. He said the exact same words, "Things aren't looking good for Caleb." Then we were told that we could go back and see him if we wished... I couldn't move. Kyle went back with the Dr. while I stayed and said a prayer with the chaplain. NOT EVEN 2 MINUTES LATER, Kyle came back to me. His face said it all. Our little Caleb was gone. Just like that. GONE from US. Our son. Our baby. Our child. Kailey's little brother. Our strong little warrior.

What did I do? What was I feeling? I was crying so hard I could hardly breathe. I was swearing. A part of my soul went with Caleb. It was taken right out of me, so suddenly. I will NEVER be the same. I felt like we were in a dream. It couldn't be real.

They brought us back to a private waiting room. "What HAPPENED?" we kept asking. They said they didn't know. They weren't able to give us a solid answer. We were told that he was brought back up to his room, and they were getting things all set up. Out of nowhere, Caleb's blood pressure dropped. And his heart stopped. They worked on him for 35 minutes.

Then we went to Caleb's room. There he was. Wrapped up in a blanket, dressed in a blue onesie. He looked PERFECT. No wires, no beeping machines. Silence. Emptiness. Numbness. We picked him up and held him. For hours. For hours we sat in his room. We held him, talked to him, touched him, smelled him. I never wanted to let go. Kyle and I painted his hands and feet, and made clay molds of his prints. We cut pieces of his hair, to keep. His smell. I will NEVER forget Caleb's sweet smell. As I sit here writing this, with tears streaming down my face, I know that I will never be the same person that I was before Caleb was brought into our lives. He, in many ways, changed me forever.

Wednesday, October 13, 2010

Thursday, September 30th

Grandma loves you Caleb :)

Holding my finger

My perfect sleepyhead

All of our hands together

Daddy and his son

Daddy's hand by his leg

Holding him for the first time!!! :)

Thursday, September 30th- Surgery Day

Things quickly changed over the next 4-5 hours. Kyle called me from the hospital at 8:30 am, telling me that Caleb would be having surgery today. TODAY!? The doctors just felt it needed to be done; his blood pressure was still low. Caleb was only 3 days old. What a hard morning... My mom, sister, and I raced around the house throwing things together. We dropped Kailey off with one of my friends, and I left her home in tears. Kailey didn't understand what was going on, and didn't want me to leave her. It was so hard, it was hell to hear her crying.

We got to Cincinnati Children's about 10 am. I started to cry as soon as I got to Caleb's side. Just to see the iv in his head, and to know that he wasn't as stable as he'd been. I didn't want to give him to them for surgery, didn't want to hear that 20% won't make it, didn't want to be sick to my stomach with worry for the 5-6 hour procedure. We had no choice. Caleb's broken heart needed to be fixed.

Before we brought him down to the O.R., Kyle and I were able to hold him for the FIRST time. It would be the only time that we held him in our arms while he was alive. It felt so good to feel him close, to smell him, touch him, just be with him. My first instinct was to rock him, but it was hard with all his wires, and I didn't want to pull on anything. So I just held him close, and told him over and over again that I loved him. Mommy's here.
Much too soon, it was time to bring him down for the surgery. It would be a Modified Norwood procedure. His chest would be open after surgery, and a pacemaker would be placed when they closed it. We kissed Caleb, and relentlessly walked to the waiting room. I went straight to the bathroom, got down on my hands and knees, and prayed for our little fighter. We got a private waiting room, and a nurse came in every hour to update us. Every time I heard the knock, I got all shaky and nervous.
Every update was positive!!! :) By about 7 pm, we were told that he was off the heart bypass machine, and doing good. YAY!!! :) THAT'S our boy! Then the surgeon came in, smiling, and told us that the surgery went good. He told us that they were able to do what they intended, and to give them about 45 minutes or so to get Caleb back in his room, and then we could see him. He said that the next 24-48 hours were critical, and they would keep a close eye on him. Such a wave of relief! We thanked him, and went out to text and call everyone. We had no idea that our lives would shatter within a matter of 2 hours.

Wednesday, September 29th

Caleb was doing good. :) Kyle spent the day with Kailey back at home, and I stayed with Caleb at the hospital. My mom and sister came up to the hospital in the morning, and we waited for the doctors to do their rounds. Once they came to our room, they told us that he should be stable throughout the weekend, and surgery would be Monday. It would be no problem to wait, we were told. As the day turned into evening, they began to get concerned with his blood pressure. The nurse told us that it was just lower than they wanted it to be. I was worried, and did NOT want to leave my precious boy. But I had to go back home and spend the night with Kailey, and be there for her too. It's so hard. As I was leaving, the nurse was giving him epinephrine, in hopes that it would help his blood pressure. She didn't seem too concerned, and I left with my mom and sister, hurrying back so Kyle could be at Caleb's side.

Well, the epinephrine didn't work, so they gave him calcium. It would be like an electrolyte for his blood pressure. I wanted to be with him more than anything, and my heart just ached for him. Such a strong little man!!! That night, sleep was rough. I woke up out of nowhere at 4:30 am. I checked my phone, no word from Kyle, and I just wanted to see how Caleb was doing. So I called the hospital, and got an update from the nurse. She said that his blood pressure was still a bit lower, but he was doing good. He had an iv in his head now. I got off the phone, and just couldn't sleep. I was worried about him, and just wanted to fix everything.

Monday, October 11, 2010

Sweet dreams my little angel
His favorite froggy friend

Hello sleepyhead :)

Tuesday, September 28th 2010

I got to Cincinnati Children's in the afternoon. SO excited to see my little man! He was adorable. Perfect. in. every. way. He was on a little bit of room air, and he didn't like it! They kept him nice and warm, and had a tv on in his room playing nature sounds. I stayed the day and spent the night with him. Not much sleep for me, every whimper or noise he made and I was at his side quicker than anything. The beeping of his machines became normal to me, along with all the wires surrounding him. I wish I could have just wrapped him in my arms, and never let go. The doctors weren't doing much for Caleb at this point, he was pretty stable. He was just receiving the prostaglandins to keep his patent ductus arteriosus open. They told us that it should be just fine to wait until Monday, October 4th to do Caleb's first open heart surgery, a Modified Norwood.

The nurses caring for Caleb were great. Keeping an extremely close eye on him, they were at his side when he got fussy. He wasn't able to eat, so we gave him sugar water on his soothie. :) He liked that. It's so cute... he always had his head turned to the right. That's how he was always laying, on that right cheek. :) Always made me smile.

My little Caleb, you would be 2 weeks old today. I would do ANYTHING to bring you back to us. Hugs and kisses to my perfect angel. Love, Mommy

Sunday, October 10, 2010

Caleb's Birthday 9-27-10

Monday, September 27th was the big induction night!!! :) My husband, mom, and sister Lindsay, all got to the hospital with me at 8 pm. Every emotion was running through me, and I was pretty nervous to say the least. After signing all of the paperwork, the nurse checked me to see if i was dilated at all. We were anxious... I had never been checked during my pregnancy. We find that I'm between a 2 and a 3. :) Well, labor went pretty quick after that! Lol. By 10 pm or so, I was at a 5. They broke a hole in my water, and whew! Painful contractions after that. Got my epidural, and didn't push for more than 10 minutes. Caleb Thomas was born at 11:15 pm!!! 9 pounds 3.6 ounces, and 22 inches long. THAT's our boy! :)

He came out pink as can be, crying, and lots of hair! It was hard to believe by looking at him that anything was wrong with him at all. He was perfect, and made our family complete. They layed him on my chest wrapped up in a blanket. I'll never forget, he had his hand laying against his face. It was precious. I wanted to hold him forever, and never let go. But I knew that they needed to take him and do tests, echos, ultrasounds, etc.

Soon after, Caleb's cardiologist came in to speak with us. We talked about caleb's heart, and joked about his weight. :) That would be in his favor we were told. Before birth, we had known of 4 defects going on, and now the list was about 6. It's so hard to hear, I just wanted to fix him. He told us again that it's severe and complex, and that whatever path the surgeons chose to take, would not be black and white. There would be moderations and differences in comparison to other HLHS babies. Still trying to take it all in, and the excitement of having Caleb finally here with us, made it hard to sleep.

We were switched to a different room, and waited for Caleb to be brought in to us, before he was transported to Cincinnati Children's. They left around 3 am. They were so nice... brought his isolette right next to my bed, and opened the side so I could touch him. :) He was still doing great, very stable, and on room air. It's an hour drive, so Kyle got a bit of sleep, and then left to be by his side. I couldn't wait to get down there as well, I would've left right then if I could! About 2 pm, my Mom and sister came and brought me to see our little peanut. It was hard to see him hooked up to everything. We marveled at his reddish tinted hair :) He was PERFECT!