Lucas-Our Trisomy 18 Experience
This blog was created as a way for friends and family to receive updates on what is happening with Lucas. But, it is also for those seeking information and guidance for their own situation. I'm sure we didn't do this "right" but hopefully this will help someone, just to see how one family made it through this nightmare. I am sure that I ramble on at times, feel free to ask questions, I will do my best to answer them as we muddle through this.
Friday, October 31, 2014
It's been a loooong time....
It has been a crazy long time since I updated this blog. I kind of figured that no one was reading it anymore, but I told a new friend about it this week and thought I should check up on it and apparently 72 people read it last month?! I feel horrible now for leaving such a cliff hanger as my last post. So, here is a quick update!
Mike and I are now the proud parents of five children. Andrew is 8, Olivia is 5, Sofia is 2, William is 1 and of course Lucas would be almost 4.
My pregnancies with Sofia and William were just like all the others, plagued by sickness and ending in a c section. I was a nervous wreck with Sofia since it was the first one after Lucas. But, after the 20 week sonogram I relaxed, a lot. We had the sono done at the perinatologist's office (we did the same with Will's 20 week). The doctor very closely examined her heart, brain, lungs, everything really. We left there very comfortable and confident. I was a bit calmer with William's pregnancy, perhaps because I was too busy, tired and sick to be worried.
We are blessed. Sofia and William are unfathomable blessings. They make our family on earth complete. If Lucas had been okay I'm not sure we would have gone for four and I'm positive we would not have had five. It is a double edged sword; I miss Lucas, I still cry, I still long to hold him....but I take great joy in Sofia and William.
Lucas is gone, I can't change that. When I think about all we went through I feel invincible. I did that. I survived. I am happy. God is in the business of blessings. I am blessed.
Tuesday, December 6, 2011
Life moves right along
Life is busy and I have not updated since we saw the doctor in October, but our results were good. Our odds of having another trisomy are very low, 1 in 2500. I guess this has made me feel better. I am now 20 weeks and the baby is really active, like Lucas...this makes me nervous. We have our 20 week sono on Thursday and I am nervous and terrified. This is when we learned about Lucas and it is bringing back a lot of feelings. I plow ahead an do my best to look forward and not back. This baby deserves my full attention and joy. So, I pray for peace and count the hours until Thursday!
Tuesday, September 13, 2011
No more counting the months
I have decided to stop titling my blogs by time gone by because I have stopped thinking about Lucas in terms of how old he would be or how long it has been. Of course I do still think about him daily and am reminded constantly of the missing piece of our family. However, I have other things to focus on as we are expecting our fourth child in April. There will always be a hole where Lucas belongs, but we are excited about adding to our family.
Being pregnant again has been difficult, physically, I am sick like each time before. Emotionally, I am being cautious. I am of course head over heals for this little critter, but there is cautiousness in my spirit, I imagine this is unavoidable having the life experiences that I have.
Andrew is crazy excited! He hugs my tummy and says good night and I love you to the baby. He also keeps calling it Lucas, not easy for me to hear. We had a couple conversations to make sure that he understands that Lucas is not back in my tummy. I think he is just used to referring to the baby in my tummy as Lucas and is having a hard time breaking that habit. I told him we should find a nick name for the baby until we find out what it is, we are working on that.
Olivia is excited that "we" are having a baby. She is eager to be a big sister and tries desperately to see the baby or touch it by reaching through my belly button!
I have been to the doctor and we saw the baby's heart beating and that was fantastic! My doctor was once again wonderful, he said congratulations and then asked what we needed to do in order for us to feel comfortable. So, we have an appointment with the perinatologist on October 10th for a sonogram. The doctor will measure the skin on the back of the baby's neck and run my blood work and then give us the odds for Down Syndrome, Trisomy 13 and Trisomy 18. We are most interested in the sonogram and being able to see the baby again. We will also have a level 2 sonogram later on with the perinatologist. Hopefully, these visits will give us some peace of mind.
So, I am buckling down for a couple more months of being nauseated 24 hours a day and looking forward to holding my living, breathing baby in my arms.
Being pregnant again has been difficult, physically, I am sick like each time before. Emotionally, I am being cautious. I am of course head over heals for this little critter, but there is cautiousness in my spirit, I imagine this is unavoidable having the life experiences that I have.
Andrew is crazy excited! He hugs my tummy and says good night and I love you to the baby. He also keeps calling it Lucas, not easy for me to hear. We had a couple conversations to make sure that he understands that Lucas is not back in my tummy. I think he is just used to referring to the baby in my tummy as Lucas and is having a hard time breaking that habit. I told him we should find a nick name for the baby until we find out what it is, we are working on that.
Olivia is excited that "we" are having a baby. She is eager to be a big sister and tries desperately to see the baby or touch it by reaching through my belly button!
I have been to the doctor and we saw the baby's heart beating and that was fantastic! My doctor was once again wonderful, he said congratulations and then asked what we needed to do in order for us to feel comfortable. So, we have an appointment with the perinatologist on October 10th for a sonogram. The doctor will measure the skin on the back of the baby's neck and run my blood work and then give us the odds for Down Syndrome, Trisomy 13 and Trisomy 18. We are most interested in the sonogram and being able to see the baby again. We will also have a level 2 sonogram later on with the perinatologist. Hopefully, these visits will give us some peace of mind.
So, I am buckling down for a couple more months of being nauseated 24 hours a day and looking forward to holding my living, breathing baby in my arms.
Friday, June 24, 2011
6 months
It has been 6 months. Seems like a short time, but a lot has happened and a lot has changed. I continue to try to become pregnant and it still isn't happening. Kind of boggling at first, but recently the reason seems obvious. We feel very clearly that God is leading us toward adoption. I still want to have a baby, I have the desire to be pregnant. At this point, we are moving forward with both adoption and continuing to try to become pregnant. We are talking with a birthmom now who is due in September. She is talking to lots of couples, so I am trying not to get too excited. I am excited to see how God grows our family.
This evening we were at my parents' house and I asked to see Lucas' ashes. This is the first time I have seen or held them. It was not at all what I expected. First, they looked different than I envisioned, they were "chunky" and not much of them. But, mostly it felt different than I thought it would. Those ashes are not my baby. My baby has a beautiful and healthy body in Heaven.
The feelings are still overwhelming at times, but the joy of life is definitely outweighing the sadness and grief.
Onward we go, I am starting to consider how I want to celebrate Lucas' first birthday. I'm not sure how best to handle that day. I guess I have 6 months to figure it out.
This evening we were at my parents' house and I asked to see Lucas' ashes. This is the first time I have seen or held them. It was not at all what I expected. First, they looked different than I envisioned, they were "chunky" and not much of them. But, mostly it felt different than I thought it would. Those ashes are not my baby. My baby has a beautiful and healthy body in Heaven.
The feelings are still overwhelming at times, but the joy of life is definitely outweighing the sadness and grief.
Onward we go, I am starting to consider how I want to celebrate Lucas' first birthday. I'm not sure how best to handle that day. I guess I have 6 months to figure it out.
Thursday, March 24, 2011
3 months yesterday
It was 3 months yesterday. It is getting easier, that sounds so lame and simple. This isn't simple at all. Sometimes it hurts just as intensely as the moment I let go of him and there are parts of the day when life takes over and I am not sad. Andrew and Olivia are busy and I am busy as well. I have a bunch of little projects going around the house, one of which is trying to get pregnant again. So far, I have gotten pregnant really easily and am praying that will be true the fourth time as well. When it happens you all will be the first to know. I am excited about a pregnancy and a baby. I think I will have a different outlook on the 5 months of puking this time!
There were about 7 women in my life who were pregnant and due within 2 months of me, they have all had their babies now, and I am glad that is over. I feel awful that I can't hug them and hold their babies and tell them how happy I am for them, but the thought of that seems as impossible as anything could be.
I don't think I have talked much about my sleeping....I don't. I have horrible and vivid dreams, nightmares really. I am hoping this will pass as time goes on.
I think I am healing, I am running a 5K April 16th. It has been a good distraction and motivator to start running, since it has been about 5 years since I ran! I must run now actually.
There were about 7 women in my life who were pregnant and due within 2 months of me, they have all had their babies now, and I am glad that is over. I feel awful that I can't hug them and hold their babies and tell them how happy I am for them, but the thought of that seems as impossible as anything could be.
I don't think I have talked much about my sleeping....I don't. I have horrible and vivid dreams, nightmares really. I am hoping this will pass as time goes on.
I think I am healing, I am running a 5K April 16th. It has been a good distraction and motivator to start running, since it has been about 5 years since I ran! I must run now actually.
Tuesday, February 15, 2011
7 weeks, 6 days
I was asked recently how I was doing, well I am asked that all the time...but this time it was followed by additional questions, one being, "are you blaming God?" Previous to this, I hadn't really given the idea of blaming God much thought. I don't believe He caused this or that he wanted our baby to die, He knows what it is like to lose a son. This world is a sinful place, and our sin has caused our suffering. As I thought more about God's role in this situation, He is certainly not to blame, but deserves the glory for us making it this far. He didn't heal our son, but He is healing me everyday and His hand is so obviously at work in this situation. The day I received the call from the doctor, my mom "happened" to be with me. The day I went into labor my sister and brother in law were in town to watch the kids so both sets of our parents could be with us at the hospital. My mom just "happened" to be with me again when I went into labor. My c-section recovery has also been miraculous, I have felt physically normal since about day 7. These are just a few of the big examples, there have been countless times when in my darkest moments He is there. I know God is at work around and in me everyday, but it is so easy not to stop and notice and give him the thanks he deserves. One of my goals is to notice Him more and be thankful.
Friday, January 14, 2011
3 weeks, 2 days
3 weeks have gone very quickly. The kids have kept me going. We are back into our normal routine and I feel pretty normal physically. Mike and I have good days and bad, there have been days when I haven't cried. Those days are beginning to come more frequently. I am planning for the future, Mike and I are taking a trip for my 30th birthday at the end of February and we are planning on getting pregnant again as soon as the doctor says it is okay. Hope has kept me going through this whole thing and I feel like my hope is getting more hopeful.
Andrew asked yesterday if we could have another baby and if this one could survive. Ugh. I told him that was our plan and Lucas' condition was really rare and that everything should be fine next time, I really believe it will. He then asked a lot of questions about Heaven, he is such a thinker! He wanted to know what it would look like, if people in Heaven can see and hear us down here, if Lucas would grow up or if he would stay a baby. I did my best to describe Heaven and told him that I didn't know for sure what it would be like, but I did know that we would be praising God. He wanted to know if he was going to Heaven next, and I tried to explain how normally older people go to Heaven when their bodies are worn out and they need new ones. I assured him he would go to Heaven after Mommy and Daddy, and oh how I pray that is true. He seemed satisfied with my answers, I wonder what he will ask next?
People have been really wonderful to us, we have been given very kind cards and gifts. I have been told that it is common to lose friends in a situation like this because people don't know what to say to you, so they don't say anything. I am thankful that I have not seen this happening to us. We have an amazing support system of family and friends and I give them a lot of credit for us getting this far, they have been invaluable. Of course, the majority of the credit goes to God. Losing a child is something He knows a lot about and He has certainly carried us through this and continues to do so. I'm not sure when I will be through it, I'm not sure I ever will. But, I am starting to believe that life will feel normal and happy again and losing Lucas will not overshadow everything forever.
Andrew asked yesterday if we could have another baby and if this one could survive. Ugh. I told him that was our plan and Lucas' condition was really rare and that everything should be fine next time, I really believe it will. He then asked a lot of questions about Heaven, he is such a thinker! He wanted to know what it would look like, if people in Heaven can see and hear us down here, if Lucas would grow up or if he would stay a baby. I did my best to describe Heaven and told him that I didn't know for sure what it would be like, but I did know that we would be praising God. He wanted to know if he was going to Heaven next, and I tried to explain how normally older people go to Heaven when their bodies are worn out and they need new ones. I assured him he would go to Heaven after Mommy and Daddy, and oh how I pray that is true. He seemed satisfied with my answers, I wonder what he will ask next?
People have been really wonderful to us, we have been given very kind cards and gifts. I have been told that it is common to lose friends in a situation like this because people don't know what to say to you, so they don't say anything. I am thankful that I have not seen this happening to us. We have an amazing support system of family and friends and I give them a lot of credit for us getting this far, they have been invaluable. Of course, the majority of the credit goes to God. Losing a child is something He knows a lot about and He has certainly carried us through this and continues to do so. I'm not sure when I will be through it, I'm not sure I ever will. But, I am starting to believe that life will feel normal and happy again and losing Lucas will not overshadow everything forever.
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