Tuesday, December 30, 2008
I decided the other day that I need to go back to work. I miss my co-workers. I've been at the mall almost everyday, and I figured I should be getting paid for it. My boss told me that I needed to go to my doctor to get a work excuse. I figured I could call them and they would just give me the papers I needed. Nope.
I called today and told the woman on the phone who I was and what had happened to Caleb. I told her I wanted to return to work as soon as possible. She said, "You want to return after 3 weeks? Don't you want to spend time with the baby?" I almost lost it. Of course I want to spend time with my baby. It would have been nice if you listened to the beginning of the conversation when I told you that my son died.
Ever since that conversation, I've been kinda miserable. I've been fighting back the tears, fighting the urge to punch a wall. I thought I was going to be ok, but it's just one thing that set me back at the beginning of this. I need my counseling, I was just waiting until after the holidays to do it. I will be fine while I wait. I just need to take it one day at a time.
Wednesday, December 24, 2008
Since Caleb's journey to Heaven, things have been hard imagining my first Christmas without him. Like I've said before, I was so excited for this holiday when I found out when he was due. My holiday wish is that everyone take a second to hug their child or closest family member, just to make sure they know you love them.
I never knew how much my precious little dude (hehe) would change the life of people. My co-workers are forever influenced by him, and they never even met him. My family is beyond changed by Caleb's presence. But it's amazing how many people I graduated from high school with have educated themselves, or privately read my blog. I even have someone from Australia email me through Facebook to tell me she'd been following my blog. My son, this tiny baby who never set foot on the Earth to make his imprint, somehow stole the attention and possibly the heart of someone across an ocean. I miss him terribly with every fiber of my being, but I become more and more amazed with him every day.
Caleb, as Mr. David said, you went to play Baby Jesus in the Angels' Nativity scene. Do your job well. I can only imagine you as the most beautiful Baby Jesus. I look at this Christmas as a blessing because I had the opportunity to not only carry you, but I got to hold you and be your Mommy for a day. The happiest day of my life.
Merry Christmas, my tiniest angel.
Saturday, December 20, 2008
As the obituary stated, I asked for a in lieu of flowers request. I asked for money to be donated to the Trisomy 18 foundation. So many people have sent small donations, but every dollar counts. I'm trying to figure out how to get a widget for my blog, but an update is all I have thus far. Since his passing, I have raised $105 for the Caleb Alex Trisomy 18 Memorial Fund. Also, my mom's co-workers have been raising money for the fund, so it could be so much more. I would like to do a fundraiser as well, but that will take time. (Pssssst, if I have any volunteers...please let me know)
I would just like to thank all of you from the bottom of my heart. I've never been more excited in all my life to be doing something as incredible as raising money and awareness in honor of my priceless child.
Thursday, December 18, 2008
Like my friend Courtney said that the memorial, "I loved him so much." I knew she meant it, everyone meant what they said. So many people loved this little guy since before his diagnosis, and continue to give a huge piece of their hearts to him after his passing.
Christmas is a week away. The closer it comes, the harder it is becoming. We have ornaments on the tree for him, but it's not the same as having him there. I had so many visions of sitting him by the tree, riding the train at the mall, sitting on Santa's lap. All of that will never happen. That's the part that will always take my heart and stomp it.
Luckily for me, there is a mother on the Trisomy 18 support site who's going through this journey at almost the same time. I guess I shouldn't say I'm lucky because no one should ever have this pain, but Lacey has been amazing to me. She lost her love on my due date. She emailed me through the support site, and we've been keeping in touch ever since. She gives me suggestions and I try to do the same for her. If she's reading this, she already knows how much I appreciate having her in my life. I don't know what I would do without her right now. I can't imagine doing this without having a release like her. My family has been so supportive, but there's honestly nothing like having another Mom going through this with me. I can't explain it.
I know Caleb is buried now. I haven't been able to go up there and actually see his name on a marker yet. I hope he understands. My mom suggested going tomorrow at 1:51PM, it will be exactly one week since. He's buried near my younger brother Alex, who passed away 22 years ago. Yes, pain can touch a family more than once.
I worry about my mother. She not only lost a baby herself, but she had to watch her baby lose a baby. I can't imagine how much she hurts; I know she does. She didn't just watch me lose a baby, she had to say goodbye to her grandbaby. My heart hurts for Caleb, but I know he's safe and happy now. Now, I worry about the people he left behind.
My sister baked cookies yesterday, no doubt an attempt to think about anything else. Mom helped her, again, probably for the same reason. Baking is usually my way of thinking of something else for 1 minute. I just can't bring myself to do it because it reminds me of something that Caleb will never be able to do with Mommy.
When my cousin Lori was here with her little guy Matteo, Mom and Kourie had him make a gingerbread house. I wanted to be apart of it so badly, but I just couldn't bring myself to sit there with him. I knew I would cry and hurt in front of him. I had been trying to avoid that the entire weekend.
Speaking of Matteo, that little guy is so intuitive. While I tried to cry out of his sight, he knew something was going on. Lori had him in the tub, explaining the importance of being quiet in the funeral home the day before the memorial. She was explaining how Caleb went to be in the arms of Jesus. He looked at her and asked, "Is that why her back hurts and she's sad?" It's amazing how a 3-year-old can know so much, or at least pick up on these things.
Another amazing thing about Matteo. We went to the cemetery on the day of the memorial to release the balloons for him. We were looking for his gravesite so that we could release them from over him. We couldn't find it, but Matteo (who can't read yet) was looking at all the headstones saying, "Don't worry, I'm gonna find Caleb for you." He worked so hard to find him. He will never understand how much that meant to me. He's an amazing little guy.
This whole situation has been so heartbreaking and hard on me. Everyone thinks I've been so strong, but I really don't feel like I've been someone to look up to. There are thousands of Moms that have gone through this before me, and there are too many Moms that are going to go through this after me. I wish this whole Trisomy 18 thing could end with me. I know it won't and I know it can't.
My hopes for this blog were to educate people about Trisomy 18 and use this as my therapy. I hoped that there maybe another Mom that just got a diagnosis like this, and that this could help her during this. During this time in my life, I've found that the internet has helped so much. There has been Trisomy Moms on Myspace and Facebook that have reached out to me, there is of course Lacey on my Trisomy support site. I find you all amazing. None of you needed to contact me, but you felt the need to reach out to me, and for that I'm grateful. I love you all, and I've never met you. I hope all that I've done through emailing has been helpful for you as well.
Well, this has been my emotions of the week. Thank you for listening.
Lindsey and Caleb
Wednesday, December 17, 2008
This journey began with a mixture of fear and elation. Even before Caleb Alex was a thought, I knew I wanted him. Once I knew of him, I started dreaming of him. Would this amazing little guy be a doctor, an astronaut, a zoologist? Would he cure a disease, fight fires and save lives or discover a new species of animal? I had no idea, but it was a thrill to be thinking about it every day, every single second.
I dreamt of summers by the pool, telling Caleb not to run with his water wings flying by sides. I dreamt of raking the leaves in fall and watching him run through them, complaining about how itchy he was afterward. I dreamt of snowmen and sled-riding with Grandpap, cookies and reindeer food with Grandma, Aunt Kourie and Aunt Amy teaching him ways to be ornery and irritating. I loved the idea of him having the best cousins in the world that would pick on him constantly, but defend him when other kids made fun of him. I felt something inside me that I took for granted. Hope. Every kick would trigger something new in me; something I’d never expected. I was going to be a Mommy. Even with the fear pulsing inside of me, I was elated to have a future with this little guy. My little man, my pumpkin-head.
Staci Lynn and I sat around her house, playing with her little Alexis. She always said that either way, this baby was going to grow up being her best friend like she and I are, or Alexis’ first little boyfriend that would kiss her and then run away. We were thrilled that I was having the latter. It triggered so many other things inside of me, but most the dream of pictures. The one image I had was of the two of them sitting together on the sofa, Caleb’s arm around Alexis giving her a big smooch on the cheek, her face annoyed. I thought of Caleb irritating her to the point of her hitting him or pushing him away.
For myself, I dreamt of rocking him, singing him to sleep. I thought of holidays and birthdays and friendships for him. I thought about his grandparents spoiling the heck out of him. I thought of Kourie giving him gum or cookies after I had specifically told her not to. I wondered what his first word would be; even if it was a naughty word, I would be so excited for him. I couldn’t wait for the first time I would hear him call me Mommy. I couldn’t wait for his first step, first day of Kindergarten, first date, straight A’s, prom, graduation, college. My head was spinning with the bright future my little man had. The memories, even though they hadn’t happened yet, were already there.
When this diagnosis came up, my initial thought was that it had to be a mistake. There was no possible way that this was happening to me, happening to my family or him. No possible way that my precious baby could be suffering from something so terrible. My son was stronger than this, I had done everything right and by the book. How could this be happening to him after all he and I had been through thus far? Why did it have to be him? I felt like a hole had been ripped into my chest and the life had been sucked out of me. My hopes, my dreams, everything gone with the simple words Trisomy 18.
After the shock of this diagnosis, I started to fight the fear of losing my baby. I fought with every ounce of the energy I had left to push stress away. I knew that I didn’t want him to feel what I was going through. I wanted him to know that even though this was happening, I was still honored and amazingly thrilled to be the mother of such a brave baby. In the end, he was making a sacrifice that really wasn’t his to make and I wanted him to know that I was so proud of him. I wanted him to continue to grow and gain the strength because this wasn’t a death sentence; it was just a bump in the road for him. I continued to do everything right. I was going to do everything in my power to bring him into this world as safely as I could.
In the days before he entered the world, I became anxious. I wasn’t nervous for myself or even the birth process, but I was anxious for him. Worried that he wouldn’t have the strength, or I had pushed him too much. He had already proved that he was amazing by living inside of me for forty-two weeks. All he had to do now was come out and meet me. I had been waiting for 10 ½ months to hold that miracle in my arms and all I’d asked for were a few short minutes with him.
When it came time to actually give birth, I began to cry. The realization of him was coming to me and I knew that the outcome could very well be sad. When it came time to push, I didn’t think I could do it. I didn’t think I had the strength that Caleb did, but something in me, something I didn’t know existed pushed me to make sure he came safely. I dug down so deeply, hoping that the faster I got him out, the better chance I had of seeing him alive. Nothing could have possibly stopped me. And nothing could possibly hurt more than hearing the words, “Lindsey, we checked him and he didn’t have a heartbeat. I’m sorry.”
When I saw him for the first time, my heart stopped. I’d never seen anything so beautiful, so precious as his perfect little face. I’d never felt such a combination of joy and agony at the same time. I studied everything about him, committing it to memory. I stared at his feet and his legs, his fingers and his arms. I followed the contour of his chest, to the curve in his neck, the dimple of his tiny chin. His cheeks had the perfect roundness to them, his nose the tiniest thing I’d ever seen. I even got to see the bright sapphire color of his eyes, which I’d never dreamed could be possible. His hair was dark and thin, and it was the softest texture you could possibly imagine. He was absolutely perfect on the outside, regardless of what was inside of him that stole him from me.
This child, no matter how short his time here was, made an impact on the world. He imprinted himself on my heart and my soul, just as he’d done with the rest of you. He may have and a tiny hole in his heart, but that is nothing compared to the hole he left in mine. I never knew I could lose the love of my life before I’d even met him. While I feel he’s lucky to be safe and warm in the arms of Jesus, I feel that I’m even luckier. This tiny human taught me what it really was like to love. He taught me what heartbreak really felt like. He also showed me that I have a strength in me that I never knew existed before. He made me into an adult, even though that wasn’t his job. He will be on my mind and in my heart everyday. I will never forget the amazing strength that he carried, and the bravery it took to leave so early.
Caleb, you will never know the pain of skinned knee, or a broken heart. You will never know sin or worry that you’ve upset me. You will never struggle over a math problem or be upset that you couldn’t find a date to the dance. You will only ever know happiness and comfort. For that, I’m grateful. My sweet baby, you can finally be at peace. Run around, jump, dance. Do whatever you want to in Heaven because you now have the chance to do so. Know that I will miss you with every breath that I take, every beat of my heart. One day I will join you in Heaven and we will do everything that I’d planned to do with you here on Earth. . I can’t wait for the day I hear you call me Mommy when I meet you there. You are everything I could have hoped for in a child, I love you and I could not be prouder to call myself your mother.
Monday, December 15, 2008
After a brave battle with Trisomy 18, Caleb Alex Ofcansky, infant son of Lindsey M. Ofcansky, of Greensburg, was born to Heaven Friday, December 12, 2008 at Magee Women's Hospital, Pittsburgh. He was predeceased by his great-grandmother, Mollie Ofcansky-Freed and an uncle, Alex M. Ofcansky. In addition to his mother, Caleb is survived by his grandparents William E. and Debi Ofcansky, of Greensburg and aunt and godmother, Kourie Ofcansky, of Greensburg and aunt, Amy Schade, her husband Laddie and their children Kiennen, Nicholas and Kierstin of Irwin. He is also survived by great-grandfathers William Ofcansky, of North Versailles and Richard Freed, of Squirrel Hill, great-uncles Harrold Ofcansky and his wife Rene, of White Oak, David Ofcansky and his wife Kim, of Pitcarin, and John Ofcansky, great-aunts Faye Kirkling and her husband Michael of Greensburg, and Sandra Richardson, of Newnan, GA, godmother Staci Gressley, her husband Justin and daughter Alexis, of Indiana and cousins Lori, her husband Vito and son Matteo, Savannah, GA, Jessica and Neveah Immel, Ashley Smith, Sarah Richardson, Amanda Dukes, Nathan, Holly and John Ofcansky. A private memorial service will be held at 10 a.m. Tuesday at the BARNHART FUNERAL HOME, 505 E. Pittsburgh St., Greensburg. Private interment will be in St. Clair Cemetery. In lieu of flowers, donations should be made to the Trisomy 18 Foundation in Caleb's memory at www.Trisomy18.org.
I did get to spend the entire day with him and I was so happy that I even got that. It's just that tomorrow hasn't even happened yet and it's a worse day than the day I lost him.
All I ask is that tomorrow my family be in your thoughts and prayers that we will have the strength to get through it. Especially for me, and it's only because I have to read the eulogy. I will have that posted as well as pictures from the balloon release scheduled for 1:51PM, the time he was born to Heaven.
Caleb's obituary was posted on the Tribune-Review's website. I would really like people to sign it so I can print it out for his scrapbook. Here's the link:
Thank you all for your continued thoughts and prayers for my family at this time. You will never understand how much your love and support truly means to me and my family.
Saturday, December 13, 2008
The nursing staff and doctors who delivered me were absolutely amazing and patient with my brand of humor. The birthing process went smoothly for me, mostly because I had the epidural. I got to watch my son come into the world through a mirror attached to the ceiling. I watched him come out, with the cord around his neck and I knew that we weren't going to have the luck that we'd prayed for. We were able to keep him all day, kissing and hugging what once was my precious son. We met with the NILMDTS photographers, who took stunning photographs for my memory of him. Courtney, Aunt Amy, and Stacy T (who stopped by later to visit) stayed with me for most of the night. We finally decided to baptize Caleb right when my father showed up to meet his grandson. He was baptized at 8:10PM, and my family said out final goodbyes at 12:05AM. I was discharged from Magee at 1:30AM to mourn with my family.
Words cannot express the amount of sadness I feel right now. I never knew someone could feel so much joy and pain at the same time. I also never knew that the love of my life would leave before I ever even got to meet him. My heart has never hurt so much, and I'm not even sure that it will ever heal from a break like this. I prayed and prayed and prayed for him on a daily basis to make it, and no amount of prayer could bring him home with me through the holidays.
Now, I take the time to thank all of you who religiously read my blog throughout this process and those who checked it like it was your job these past few days. There were so many of you praying for him, that I truly believed that a miracle could occur. Even though it didn't happen for me, I appreciate every single one of you who took the time to make comments and reassure me throughout this trying time. No amount of thank you would ever be enough for all of you. You were truly a big part of my strength in getting through this.
There were pictures taken of the day (of course), and I will be posting them as soon as I can. I'm just really tired right now and don't have the patience to do it. I will have them posted tomorrow sometime.
Again, thank you so much.
Friday, December 12, 2008
Stay tuned for further updates.......
And because this is my labor and nothing will go smoothly, it snowed like crazy outside last night and we will be making that journey to Magee in this. By the time you are reading this, you will understand.
Updates to follow...
Thursday, December 11, 2008
So it's been a slow day for Caleb and me. I've been having consistent contractions at 10 minutes apart. I'm in an incredible amount of pain, but I'm toughing it out so I don't get sent home from the hospital. It's been a long day, but I'm doing my best to get through it. I took a little nap today, but the contractions kept me up. I gave up sleeping and now am just going through the motions.
Mom just said that since the pain is intensifying, we might be taking a trip to Magee just because of the weather. It's starting to freeze out there and we just want to be close just in case. It's a 45 minute drive for us on a good day. Just taking precautions.
If nothing ends up happening with in the next 24 hours, I am to report to the hospital at 8am tomorrow to be induced. So either way, there's a baby coming and we are ecstatic!!! It's about time Caleb Alex!!!
I will try to keep you updated throughout the day, but since I didn't sleep last night...I'm gonna try and do some of that too.
Thanks for your continued support guys! It's been knowing that you're reading that's been helping me get through this.
Mom has her laptop with her and we will be blogging as much as possible. I guess the induction will not be necessary.
Wednesday, December 10, 2008
To be continued...
I tried to be patient and understanding because doctors have to know more about this than I do. My problem is, I'm in pain and I want him out. I couldn't sleep comfortably. That's really the least of my problems. I wonder if I lost time with Caleb because the doctors have been pushing my induction and the decisions to the last minute. What if I lost two weeks of precious time with my baby? I'm already dealing with the negative sides of this. I'm starting to definitely feel anxiety here, and I've been doing an amazing job controlling my stress for Caleb's sake.
I just want this whole situation to be over with. I've been going through this for 9 weeks now, wondering if my little man is gonna be strong enough to pull through this. Now, I'm throwing myself on the mercy of God here to please allow me some time with him. The call I had yesterday with Magee made it sound like they were just going to make me wait as long as possible before they decide to induce. What happens if he decides he can't hold on anymore and he passes away before I get a chance to ever see him? I don't know if I'm strong enough to continue like I used to. I'm so deathly afraid of never hearing him cry, seeing him breathe or even a tiny smile that I've been looking forward to since I found out I was pregnant.
I can't take this anymore. I want Caleb now, and I can't imagine going through this anymore.
Monday, December 8, 2008
It's Grandma's Turn To Talk
This is Caleb's Grandma talking now. We found out that the doctor at the hospital where Caleb will be born is not in the office today. We now have to wait until tomorrow to see when they want to schedule to induce. Our hometown doctor's have been wonderful, but the lack of communication with us and the delivery doctors has caused just as much anxiety as the situation we are in.
I worry about my daughter, who is my hero, after all that she has been through, and the next journey we will be going through as a family. She worries more about all of us...her sister will be taking her finals this week. She will be one of Caleb's Godmothers. Her dad is a self employed hairdresser and works alone. What about his schedule? Her best friend, and Caleb's second Godmother, has an 11th month old daughter. And she works. Her older sister, who has three kids of her own, and is also in a business with her husband. And finally, a cousin, who is more like a sister, and lives in Georgia. She and her little boy and husband would like to come up here to meet our little wonder. I am the lucky one. She and I will be going through the delivery together, and as you do with your children, I will drop everything to be with her at this time.
We will need to have Caleb baptized as soon as possible, due to not knowing how much time he will be with us. We have made many arrangements, some I never expected to have to do when a little baby is coming. One of the best connections we have made is with an organization called Now I Lay me Down To Sleep. They specialize in infant photography for "situations" like ours. I am a photographer, and have taken thousands of pictures of my family and others. But I know I will be in no condition to do justice for my daughter at this time. I am looking very forward to meeting the very wonderful young woman who has eased my mind with this very important detail.
We have been offered the use of many things, from furniture to clothing to help us out. We cannot tell you how much we appreciate all of the offers. We are just too afraid to go all out, because we still don't know the outcome. Being the Grandma, I of course couldn't help buying the 1st Christmas ornament. And I bought one for Caleb's Mommy that says "I Love My Mom". And the baby blue and white Santa hat and stocking that we are probably going to be able to fit Caleb in because he will be so small!
Lindsey is resting now, after all she is 41 weeks and 5 days along. I hope she is dreaming peaceful dreams about her and her precious little boy. As she says... We are going to be Happy now, we will be sad later. I told you she was my hero.
And for everyone who is reading this blog. Thank you so much for caring enough to follow our family on this journey. Please keep us in your thoughts and prayers. You will be in ours.
We will update you tomorrow after we hear from the delivery doctors.
I'm still only a centimeter dilated, so it looks like it will be Thursday or Friday that I will be forced into labor and Caleb will be forced to face the real world. YAY! At least I finally have a chance to look forward to something.
Updates to follow if needed...
Sunday, December 7, 2008
So I have an appointment tomorrow, and this one will finally determine whether or not I need to be induced. I was really hoping he would decide to come on his own, but on Wednesday he'll be 2 weeks overdue. We're running out of time here. He'll just have to be drug out. We shall see...
Updates will follow after tomorrow's appointment!
Wednesday, December 3, 2008
When we were are the doc's yesterday, I was giggling because this figures. It's my child and I shouldn't be surprised that he's decided to make this difficult. He somehow knows this is all his deal and he can do whatever he wants. Good news is, he's still moving around and he showing me he's gonna be a fighter.
I'll be keeping you updated...
Monday, December 1, 2008
Needless to say, I'm frustrated. I want to meet this guy and I've waited long enough. I don't know how long I will have him for, so the sooner he comes out, the better. Of course, I could take into account that he doesn't want to come out yet because he's trying to come out healthier than he would be if he came out now. He's taken the wheel here, but I want to stomp on the brakes and get him out. I'm already nervous about giving birth and doing this by myself. Why add more stress to mommy? Oh right, this is my child and it makes sense that he would chill in there until someone forces him out of the comfort of my womb.
Updates will follow tomorrow...
Sunday, November 30, 2008
We've been receiving a ton of phone calls from friends and family trying to find out what the situation is with Caleb. He's just being stubborn and hanging out in there because it's warm, safe and rent free. We're all trying to be patient and wait for his arrival, but he's just gonna do what he's gonna do.
Again, we're updating as things are happening...but nothing is.
Thursday, November 27, 2008
Other than all that, there are no other updates. Caleb is still kicking and moving around like crazy, he's just not ready to come out yet. I never got a phone call back from the doctor's office, so I assume that the appointment for Magee hasn't been made yet. I will be calling tomorrow to see what will be happening with that.
I hope everyone has an awesome holiday. I'm crossing my fingers that this little turkey will wait until I'm done eating mine.......
Tuesday, November 25, 2008
I was gonna schedule an appointment for next week, but the doctor thought it would be a good idea if I went to Magee for my next appointment. When they called down there to schedule it for me, the doctor on the other line said that she would talk to the team that met with me a month ago. She assumed that they would want to induce me by the end of the week. I was told to wait for spontaneous labor, but now it looks like the plan may be changing. I will keep you posted. I haven't even gotten a phone call about when the appointment yet, and I will be calling the office tomorrow to see when it's happening. They said they don't want to wait until next week, so I could be visiting as soon as Friday.
There really isn't a lot going on until I go into labor. If we are able to blog from the hospital cause we're allowed to have a laptop there, we will be keeping everyone updated.
Friday, November 21, 2008
Other than that, things are awesome. I'm 5 days from my due date and I'm excited. Caleb got his first Christmas ornament (a tiny snow globe that has his name on it). We're going to start preparing for him to come home with us, regardless of what the doctor's at Magee have been telling me. I'm holding onto the hope that my son will be coming home with me, and he will be here for his first Christmas and hopefully more. I want everyone to meet him and get to know him for who he is. I want to be able to enjoy him. I just hope that God will grant me this.
I only have 3 days of work left before I go on leave. I can't believe that it's already that time to take time off of work and say "hi" to my new life with Caleb. I'm really surprised how much time flew by. I have been concentrating on how much I can't wait for the pregnancy to be over and it's not because of recent events. I'm just annoyed with the end of pregnancy. I have normal pains and the usual things. I just want it to be over for my sake.
Well, since nothing is really going on until I go into labor. I will blog if there's something on my mind, but other than that, I will let keep everyone updated as best as I can.
Thursday, November 13, 2008
I emailed Ginger Hites, the representative from NILMDTS that my mom contacted. I gave her an update about Caleb, and let her know that I'm more than willing to take part in the article that I mentioned in yesterday's blog. That's all I got right now; I will probably be updating about that soon enough.
There are only 13 days until my due date. I'm so excited and nervous at the same time. I have no idea how I'm going to take care of this little guy, but I'm 100% sure it will come to me as soon as I see him.
Please continue to keep us in your thoughts and prayers, only because he's gonna be here soon. Please pray that we're gonna be able to bring him home. We really just want him to come home and be with us for the holidays.
I have a lot of ultrasound pictures of this little guy. I will be trying to scan them sometime this weekend and get them up here for you all. I just realized that there are no pictures on this blog at all.
Thanks to all for becoming followers. It means a lot that everyone is taking the time to read this.
Wednesday, November 12, 2008
I have a doctor's appointment tomorrow, which is pretty standard. I'm meeting a new doctor for the first time, so I will have to go through the "I'm sorry" speech again. I appreciate everyone saying this to me, I really do. But now I've accepted this and revisited the excitement of just having a baby. I don't want to hear apologies and sympathies anymore. Let those wait until after everything that happens with Caleb happens. I want to hear nothing but happy sentiments or nothing at all.
My mom has contacted a representative of Now I Lay Me Down To Sleep, an organization that does professional photography for families whose babies have genetic disorders, etc. The photographers do this service free of charge and believe it is an honor to be a part of this. The representative will be available around Caleb's due date, but she will also have the other local photographers on alert so that we will have these pictures of him to treasure forever.
Also, the NILMDTS rep told my mother about a friend of her's that wants to do an article about Trisomy 18 babies. She asked Mom if I would be interested. Mom assumed that I would want to take part in it. Good assumption. The main reason I started this blog was to get the word out about Trisomy 18, even though there are other parents that have come before me. Being a part of this article would be one of the most meaningful things I've ever done. I will be speaking for a child that will be unable to speak for himself. I'm truly excited about doing this, so I hope that it will go through.
There will probably be an update tomorrow. Sorry it took a week since the last one. I promise I will be more diligent about blogging.
Tuesday, November 4, 2008
It is now 24 days until I'm due and I couldn't be more excited. While this is going to be the hardest thing I will ever do as a human being, he will honestly be my blessing. I can't believe how lucky I've been to carry such a perfect baby inside of me for the past 9 months. I know I've been kinda negative about this whole situation as most can understand. It's not because I feel like this is a bad thing, I know it happened for some reason. I just feel like he's being cheated out of what could be an amazing life.
Before his diagnosis, I often thought of what he would be when he grew up. Now, all I wonder is what he's going to do in his short time on Earth. What he was destined to do for Mommy and everyone else who obviously loves him. And believe me, he is the most loved baby on the planet right now. I wonder what his purpose was, what his greater purpose is that he has to leave us early.
When I watched Oprah the other day, Ginny Mooney said something that really got me thinking on the positive about Caleb. She said, "I can be sad later. I will enjoy the time I have with him." The biggest thing I never even thought of. I spent a lot of times worrying about what my family is and will be going through. I spent a lot of time feeling sorry for myself. Now, I just need to smile and realize that my son will always be my miracle baby.
Mommy loves you Caleb. With all my heart and my being and I can't wait to meet you. Please don't make me wait any longer than I have to. XOXO - Mommy
Saturday, November 1, 2008
I hope so, but I'm also trying to be realistic. I know that Trisomy 18 isn't viable with life. I know Caleb's chances aren't good. This is heartbreaking and difficult for me to accept. I've been showing a strong face and for the most part, I'm dealing with it. I still find myself taking a deep breath when I see a baby, and it takes every ounce of my energy not to run away when I see one.
Yesterday was Halloween. I worked and the mall had Trick-or-Treating for the kids. There were so many children, but I was able to deal with that because they were happy to see me and adorable in their costumes. Seeing them smile kinda made me forget about my situation for a couple of hours, something I've been needing lately.
Today was an isolated baby and no one was available to take care of the customer. I had no choice. The baby the couple had with them was smiling at me and doing cute things that kinda made it hard for me to forget that Caleb won't be a typical baby. He will have difficulties if he comes home, and I have to prepare for that. After the couple left, I took a deep breath and I was better.
Don't get me wrong. If Caleb comes home with me, I will enjoy every single second I have with him and will cherish every first that he does have. It's just hard to see everyone else with those "perfect" babies without me wondering why I couldn't be her. I know I must sound like a terrible person.
I am lucky and I know this. It will just take time for me to realize and actually see it with my own eyes.
Wednesday, October 29, 2008
The Mooney's wrote letters to their son for everyday he was alive, took over 3000 pictures and made a video about the life of their son. The miracle of his 3 month life. The video is a beautiful tribute and one day there will be pictures of my darling Caleb on this blog.
Here it is...Please watch it. http://www.youtube.com/watch?v=th6Njr-qkq0
Monday, October 27, 2008
There is nothing left except to say that I'm angry beyond belief. There should never be a question like this in my head or in any mother's head. My son deserves a future. He deserves to have a life and I was going to be the best provider that he would have ever had. I don't understand why I was tapped for this. I'm the impatient kind, and this situation doesn't change my personality. I want the answers as to why this happened NOW. I can't stand the fact that I have to wait to find out the reason behind this. Why this had to happen, why it happened to me after everything he and I have been through.
I try to keep my head up and stay positive for his sake. He still has a full month of growing to do and I won't be the reason he decides to leave early. I want to see him open his eyes and I want to feel him grab my finger. At least once. The problem I'm having is that I still have breakdowns, I wake up at night and freak out because I think that he's gone. The worst of it was when I was laying in bed with my hand on my stomach and I felt his heel kick me in the hand. I just started to cry cause I never felt anything so incredible in all my life. I often wonder if that's the only time I'll feel him kick, if I'll never feel him kick me outside of my body.
I wonder if he'll make it to Christmas, New Years, etc. The worst is that Halloween is coming up and I know there will be babies dressed up and I wonder if he'll be able to do that. I wonder if he'll surprise us all and prove us all wrong. Who knows? Only God, and I'm still trying to get over my anger with him.
Thursday, October 23, 2008
Yesterday, my mother and I went to Magee again. This time it was my turn to talk to doctors and discuss what my options were for my son. This was a trying day.
First, we had an ultrasound to look at his current status. I just can't help but look at the screen and think that he is still the most perfect baby I've ever seen. I know it's not possible to change the outcome, but I so wish that the doctors were wrong. I know they aren't. His little hands are definitely clenched and I could see them right on the screen.
Next, we were meeting with the obstetrics team cause they will be the one's delivering Caleb when the time comes. I met with 2 of the possible 20 doctors and they answered a lot of my questions, including the ones I felt were stupid. They gave me options for my delivery, and I had to make decisions. The first one I've made was not to have Caleb's heart monitored during labor. The doctor's told me that I will not be in a good place on the day and they fear that I will stress out too much if Caleb were to ever come into stress. Next, it was decided that I will not be having a C-section because it could pose a significant threat to me and it would not benefit the baby at all. Then, I decided that if he were to be born to alive (there's a significant chance he will be stillborn), there will be nothing heroic done to save him. I'm too afraid that his ribs will be broken if they pump his chest and in the end, it won't really save him.
Finally, we met with the Neonatologist. She was the best of all the doctors I met yesterday. One of the first things she did was ask if we had a name for him. When we told her, she continued to refer to him by his name, not as "the baby" or "it" or "him." The whole experience with her made me feel like I could trust her with my son. She also gave us options of taking him home or having him transferred to another local hospital so I can visit him. I made the decision to bring him home so that he can die in my arms as opposed to dying in a plastic box a few miles away from Mommy. I want him to feel comfortable before he goes.
Well, that was my Magee experinence from yesterday. And let me be the first to say that I was relieved. The first one was not a positive experience, so I was glad to have this day. I cried all day, but I know that this is something I have to deal with.
Tuesday, October 21, 2008
Trisomy 18 is a genetic mutation of the 18th chromosome. Instead of the normal two chromosomes (one from mom, and one from dad), there is a third chromosome that forms. This disorder causes many congenital defects in the child and a severe to profound developmental delay. Children diagnosed with this disorder usually do not make it past a couple of months of age or they miscarry before their birth.
Now a little about me. I'm a 24 year old woman expecting my first child. I was thrilled and shocked to find out I was pregnant because I'm not married and I was definitely not trying to get pregnant. I'm one of those people who rolls with the punches, so I got over my initial emotions and focused on my baby. The father was excited at first, but the relationship wasn't working. He decided to leave me behind with his child. After some time, I got over to the fact that I was going to be a single mother and started looking forward to the future I was going to have. I moved home with my parents to get back on my feet, and they have been nothing short of amazing to me and my child.
My story truly begins on October 7, 2008. My local doctor had me get an ultrasound to check the anatomy of my baby. After 2 ultrasounds with my local doctor, they told me that my little pumpkin was measuring small and it was a concern for them. The doctor was supposed to come and talk to me, but she was unable to discuss anything with me. The office scheduled my appointment at Magee Women's Hospital for the next Tuesday so that I could have a Level II ultrasound. I asked my mother to go with me because I had concerns of my own and didn't want to go alone. She agreed.
That day, we drove to Pittsburgh and had lunch like it was a normal day. I signed in and waited patiently for my turn on the table. The ultrasound technician came in and went about her normal business. She didn't talk much the whole time. I was sitting there with my mother for over an hour before she said she needed to get the doctor to discuss some things with me. The doctor returned and started his screening.
After several painfully quiet minutes, the doctor looked at me and asked, "Why were you sent here today?" I responded by telling him the doctors at home told me my baby was small. He continued by saying, "Ok, well we have a number of concerns here. We're going to start at the top and work our way down."
He showed me my baby's brain and told me it wasn't developing properly. Next was the heart and showed me the hole in the two bottom chambers. His bowels came next and they are twisted. He then showed me his feet are clubbed and his hands are clenched. He then concluded with, "All of this put together leads us to believe that your child has a trisomy condition. I'm sure you've heard of Trisomy 21, which is Down Syndrome. This one is called Trisomy 18 which is like Down Syndrome, but it's much, much worse." Instantly, I turned to my mother and burst into tears. He told me that he was going to send me to the echocardiologist to look at my baby's heart to see how bad the hole in his heart was. Then, I was to meet with a genetic counseler to discuss what Trisomy 18 really was and what I was to do next. After that, I was going to go back to the ultrasound room to have an amniocentisis done to confirm the results.
The echocardiogram showed that there was a definite hole in the heart, but it was fixable. The genetic counselor informed me further about the disorder. She told me everything that I had listed in the first paragraph. Following that, I went for the amnio and was told that I would get the results in two days, but they would try to let me know sooner what the results were.
My mother and I left the hospital, shocked and angry about they whole day. I wondered who to blame, who to hate, what to do next. I knew I had to carry to term because I was 33 weeks. I knew I would never have gotten an abortion anyway because of my beliefs. I knew the baby shower was scheduled for that Saturday and I knew I had to inform everyone about what was going on. My mother and I called people for the rest of the week and let them know what was happening and I even wrote a blog on Myspace.
I decided to do this blog because it will be specifically about Trisomy 18, my experience and my newfound crusade to push for the education of this. I had no idea this disorder existed and I've taken child development courses throughout my education. So now, I've decided that this and all Trisomy disorders need to be in child development books and there needs to be better education for health professionals and parents alike so that people will know how to deal with this devastating diagnosis.
This blog is dedicated to Caleb Alex. I spent 8 months planning a future with him, and now I'm spending the last month of my pregnancy trying to make sense of everything that is going to happen now. This blog is dedicated to the mothers, fathers, grandparents, aunts, uncles, and siblings that have ever had to deal with this horrible diagnosis. Our children will not have suffered or died in vain.