As I sit here on my couch and write this blog, it's still crazy to me to see the words "We're Adopting!". Are we really?! Is this real life?! Yes, we are and yes, this is real life. We are a bit overwhelmed by it all, by all that has to happen beforehand, yet so excited to see what God does and how our family grows.
How did we get to this place? What made us want to pursue growing our family via adoption? Let me share :) Before we started officially trying to have a baby, Justin and I talked about adoption a little bit, but our conversations never really went anywhere past the whole "Well, maybe. We'll see." If I'm being honest, I figured we'd try adoption is a last resort type of thing. I wanted "my own" kids first. I was a little naive. As the years went by and our infertility struggles continued, I began seeing adoption in a different light. It was becoming more and more appealing to me. I think that was the Lord lovingly preparing my heart for what He was going to do in our lives later down the road. Well, right before we were going to start the adoption process, we found out we were pregnant with our Luke. So, adoption was tabled. We didn't revisit it until December of 2015.
Back in December, Justin and I just weren't sure what road to take regarding growing our family. We knew we had 3 options. #1: continue trying to get pregnant with medical help. #2: pursue a child via the foster care system. #3: a full fledged adoption. We knew almost immediately that we were DONE with the infertility treatments. It was getting very stressful and calculated. So, we eliminated #1 and what a burden lifted! We both felt like a huge weight was lifted off our shoulders. Next was the foster care route. Back in December I had written a Christian foster care agency here in Columbus requesting info. She wrote me back, but somehow I misplaced her email and wrote again and asked for her to re-send it. A couple weeks went by, and she didn't respond. I emailed again asking for someone to re-send the info. She ended up calling me on the phone and I explained how Justin and I were considering a foster-to-adopt situation. As soon as I said that, it was like she became a different person. She was rude, she was short with me, her tone completely changed. I understand that the goal of foster care is reunification between families and children. But, it was like she wasn't interested in helping us with that, she only wanted couples that would be foster parents only. Her words to me went like this..."Well, we rarely have situations come up where we do a foster-to-adopt case, and if it does happen it's a 2-3 year process." Wow, talk about deflating. Yet at the same time, she completely answered my question....foster-to-adopt was NOT for us. And the more we thought about it, the less appealing it became. We had visions of getting a baby/child placed in our home, falling in love with it, and then having it taken away. We've experienced that. We didn't want that to happen again. When I told Justin about my conversation with the foster care lady, he said..."Well, there's my answer! I've been praying that God would make it clear as to which road we are to go down, and He's done that! We are going to pursue adoption!" And just like that, we started our adoption journey. I'm telling' ya, as soon as we had a plan, I was a different person. I don't like to be in limbo, not knowing what we're doing. I'm a planner by nature and when we finally decided what we were going to do, I was so excited.
So, on February 11th, 2016 we turned in our application for adoption to Choice Network Adoptions based here in Columbus. As of today, we are about 90% done with our home study. We will be doing a domestic infant adoption. We are open to any race, gender, and willing to take up to 2 children ranging in ages infant to 4 years. We are so excited to see who the Lord has hand picked to be Luke's younger brother or sister!
How can you help? We need prayer! Pray for us as we walk through this journey. I know there will be up's and down's. Pray that we will keep our eyes on Jesus and trust Him completely through this. Pray for the woman who is carrying our child. Pray that she will be as healthy as possible, that she will take care of herself. Pray for our baby :) That he/she will grow and develop as he/she should, that he/she will be protected and be safe. Pray for us, that we will be a light in a world that needs God. That will have a huge impact on our birth mom, her family and all the people we will be in contact with throughout this process. May we reflect the love of Jesus to this woman who carries our child. Also, we would love financial help! As you can imagine, the cost of adoption is very high. We don't know how we are going to pay for this, but know that if this is what God has for us, He WILL provide each and every dollar along the way! He's been faithful so far and I have no reason to think that won't continue. We do have an online donation fund that was started by our dear friend Teresa Sweinsberg. To donate, you can go to: https://www.gofundme.com/bsrj73jg
Thank you all for your continued support as we start this very exciting, very challenging, journey. We can't wait to see all that God has planned for us and what child/children we will be welcoming into our home and our family. I will update as we go, so stay tuned! Much Love!
Tuesday, March 1, 2016
Thursday, February 18, 2016
The Day We Buried Luke, 1 Year Later
Luke's 1st birthday came and went. It was a day that was filled with various emotions. A day that took me by surprise. I was doing ok. It was hard, yes, but we were hanging in there. We were easily able to reflect on all that God has brought us through this past year. I was thankful.
Then January 29th came. The 1 year anniversary of the day we buried Luke. My emotions this day took me by total surprise. I thought it would be a day similar to the 1 year mark of Luke's passing, but boy was I wrong.
It. Was. Hard. The day was filled with nothing but grief. I barely got through my shift at Target. I was holding back the tears constantly. It felt like my heart was literally breaking in two. I was overwhelmed with pain and anger and kept thinking to myself..."Lord, why did you make me bury my son?" I was hurting. I wanted Luke with me so badly.
When I got home from work, I knew the best thing for my heart was to sit and spend time in prayer and in the Word. I sat down, grabbed my Bible, but just stared at it. I couldn't open it. I was yet again angry with God and didn't want to hear what He had to say to me. And then the tears flowed. I sat on my couch and just cried. And it was the ugly cry too. The kind of cry where you can't catch your breath, and snot is dripping from your nose and you wipe it on your sleeve. After about 20 minutes of this, I decided to head to the cemetery.
Being that it's January, I could only stand to be outside at the cemetery just a few minutes. It was so dang cold. Instead of standing at his grave, I went and sat in my warm car, which is about 15 feet from his grave. I sat there in silence for a few minutes, just staring at Luke's picture on his headstone. I just sat. And then I started to pray. Out loud. For the first time in my life, I literally CRIED out to God. I was yelling in my car.
"I AM TRYING TO TRUST YOU!! I AM TRYING TO BELIEVE WHAT YOU SAY IS TRUE. PLEASE HELP MY UNBELIEF. PLEASE GIVE ME JOY AGAIN. I AM TRYING TO TRUST YOU!!"
I said a lot more than this, but you get the idea. This went on for about 10 minutes. After I was done praying, it almost felt like a burden was lifted from my shoulders. I just had to get it out, audibly. I had to hear it myself. I know God knows my heart anyway, so I knew He could take it.
As the day went on, I could feel the Lord restoring my joy again. I think it's true that God brings us into the valleys to show us how glorious the hills can be. It's during those dark, hard, painful times that I'm shown much grace. And when I'm on the other side of those valleys and reflect on God's faithfulness, it's then that I see how kind and loving He is to see me through the valley of the shadow of death. Just as God has been faithful to us through this entire journey, I know He will continue to be faithful each and every moment like this. And they will come again. Surely they will. I will miss Luke each and every day of my life, and with that, comes longing and pain. But, God is good and He will carry us and He will never let us go.
Lukey, we miss you. We love you. You're our first born, our precious little boy. Yes, mommy and daddy get very sad, but we KNOW you are happy, complete, full, whole, and in the presence of your Creator. Our separation is temporary. We can't wait to spend eternity with you. Your grandparents, aunts and uncles, and cousins can't wait either! They all miss you tremendously too. Hugs and kisses, sweet boy.
Saturday, January 30, 2016
Luke's 1st Birthday
January 16, 2016
The day was quickly approaching. Much quicker than Justin or I expected. Yet, at the same time, this first year went by slowly. It's a weird feeling and hard to explain. The first year flew by yet crawled along as well. It was the hardest of years, yet a year of most growth.
As Luke's birthday was getting closer, Justin and I started discussing what we wanted to do to celebrate. We had no idea what was "typical" for grieving parents to do as they celebrated the birthday's of their children who had passed. I reached out to a couple friends who had lost children and asked what they typically did. After a lot of thought, we planned to not make plans. Our pastor, Lee, told us..."Don't put a lot of pressure on yourselves. Just enjoy the day, enjoy remembering Luke and reflect on all the Lord has brought you through." What wise counsel.
So, how did our boy's birthday begin....at Starbucks of course! We got up, got ready, and went and sat at our local Starbucks with his photo book. We gazed at each and every picture, remembering each and every moment of the night he was born. Each face, each friend that was there, each nurse that was on shift that night. Thankfully, I remember each and every detail of that night. I prayed that God would keep me alert and that I would't have to be put under for any reason, and He answered. It was great to sit and look at his photo book and reminisce about those sweet, precious hours we had with him. After our time at Starbucks, we headed to the cemetery. First, we stopped at the grocery store and got a "Happy Birthday" balloon to take and attach to his grave. We cried, we talked about the night he was born, and we sang "Happy Birthday" to him. We wished more than anything that we could sing to him in person.
After the cemetery, we went to Riverside Hospital, where he was born. We were hoping to see this one particular nurse that was with me that night. Her name was Laura and she was an answer to our prayers. Unfortunately, she wasn't working that day, but the nurses we did talk to said for us to please come back and try again when she's there; said she would love to see us. We hope to do that soon! After our stop at the hospital, we went to an early lunch at Cap City Diner ~ one of our favorite restaurants here in Columbus. Cap City was the first place we went to eat after we found out I was pregnant. Unfortunately, nausea hit hard on our way that day back in June of 2014, and I wasn't able to eat a thing. We thought it would be neat to go back to Cap City and have a birthday meal there in honor of Luke, and be able to enjoy it this time! And we did enjoy it; it's a fantastic place! After lunch, we headed home. Earlier that week, we had ordered a special "pillow" from a lady on Etsy, that makes little pillows in memory of babies who had passed away, and they are the EXACT weight of your child. Justin had been getting shipping updates, and it was due to arrive on Luke's birthday! We couldn't wait to hold it. When we got home from Cap City, it was in our mailbox! It was perfect. 3 pounds, 6 ounces. We held it and remembered what it felt like to have Luke in our arms. And what great timing for it to arrive on his birthday :)
To cap off the day, we had a gathering at my sister Beth's house for dinner in honor of Luke. Earlier that week, Beth asked if it was ok if she planned a get together for Luke's birthday and of course I said yes! I was so excited. We had a great evening with close friends and family and a special time of remembering our little boy. There were tears, of course, but there was also a sweet time of sharing and reflecting on how God has been so faithful through this first year without Luke. We still question why this happened, and what good will come out of this, but through it all, our eyes are still on Christ.
Justin and I also wanted to start a new tradition each year for Luke's birthday. We debated about what to do. Wanted something special and meaningful, but wasn't quite sure what that looked like. Justin came up with a GREAT idea! Each year, we are going to buy Luke a birthday card, write in it, and keep them in his keepsake bin. So, we went to Lifeway, and bought a birthday card. That was difficult, knowing he would never see it or read it. But, we knew we would and Lord-willing we would have other children that could read them someday. We thought it would be neat to go back and read them over the years. Here is the first one...
So, overall, the day was difficult yet happy at the same time. I didn't know how I would be emotionally, and thankfully the Lord brought me joy that day. I didn't expect that. I thought I would be a mess. As I was going throughout the day, I kept wishing that I was planning an actual birthday party for my son. I wished that I could see him smash his first birthday cake all over the place. But as I reflected on the day....I started wondering about what birthdays are like in Heaven. I'm sure he had the grandest party of them all! Way better than I could've pulled off!
My sweet boy, happy birthday! I can't wait until I can celebrate birthdays with you in Heaven and smash cakes together! We love you and miss you more and more each day.
The day was quickly approaching. Much quicker than Justin or I expected. Yet, at the same time, this first year went by slowly. It's a weird feeling and hard to explain. The first year flew by yet crawled along as well. It was the hardest of years, yet a year of most growth.
As Luke's birthday was getting closer, Justin and I started discussing what we wanted to do to celebrate. We had no idea what was "typical" for grieving parents to do as they celebrated the birthday's of their children who had passed. I reached out to a couple friends who had lost children and asked what they typically did. After a lot of thought, we planned to not make plans. Our pastor, Lee, told us..."Don't put a lot of pressure on yourselves. Just enjoy the day, enjoy remembering Luke and reflect on all the Lord has brought you through." What wise counsel.
So, how did our boy's birthday begin....at Starbucks of course! We got up, got ready, and went and sat at our local Starbucks with his photo book. We gazed at each and every picture, remembering each and every moment of the night he was born. Each face, each friend that was there, each nurse that was on shift that night. Thankfully, I remember each and every detail of that night. I prayed that God would keep me alert and that I would't have to be put under for any reason, and He answered. It was great to sit and look at his photo book and reminisce about those sweet, precious hours we had with him. After our time at Starbucks, we headed to the cemetery. First, we stopped at the grocery store and got a "Happy Birthday" balloon to take and attach to his grave. We cried, we talked about the night he was born, and we sang "Happy Birthday" to him. We wished more than anything that we could sing to him in person.
After the cemetery, we went to Riverside Hospital, where he was born. We were hoping to see this one particular nurse that was with me that night. Her name was Laura and she was an answer to our prayers. Unfortunately, she wasn't working that day, but the nurses we did talk to said for us to please come back and try again when she's there; said she would love to see us. We hope to do that soon! After our stop at the hospital, we went to an early lunch at Cap City Diner ~ one of our favorite restaurants here in Columbus. Cap City was the first place we went to eat after we found out I was pregnant. Unfortunately, nausea hit hard on our way that day back in June of 2014, and I wasn't able to eat a thing. We thought it would be neat to go back to Cap City and have a birthday meal there in honor of Luke, and be able to enjoy it this time! And we did enjoy it; it's a fantastic place! After lunch, we headed home. Earlier that week, we had ordered a special "pillow" from a lady on Etsy, that makes little pillows in memory of babies who had passed away, and they are the EXACT weight of your child. Justin had been getting shipping updates, and it was due to arrive on Luke's birthday! We couldn't wait to hold it. When we got home from Cap City, it was in our mailbox! It was perfect. 3 pounds, 6 ounces. We held it and remembered what it felt like to have Luke in our arms. And what great timing for it to arrive on his birthday :)
To cap off the day, we had a gathering at my sister Beth's house for dinner in honor of Luke. Earlier that week, Beth asked if it was ok if she planned a get together for Luke's birthday and of course I said yes! I was so excited. We had a great evening with close friends and family and a special time of remembering our little boy. There were tears, of course, but there was also a sweet time of sharing and reflecting on how God has been so faithful through this first year without Luke. We still question why this happened, and what good will come out of this, but through it all, our eyes are still on Christ.
Justin and I also wanted to start a new tradition each year for Luke's birthday. We debated about what to do. Wanted something special and meaningful, but wasn't quite sure what that looked like. Justin came up with a GREAT idea! Each year, we are going to buy Luke a birthday card, write in it, and keep them in his keepsake bin. So, we went to Lifeway, and bought a birthday card. That was difficult, knowing he would never see it or read it. But, we knew we would and Lord-willing we would have other children that could read them someday. We thought it would be neat to go back and read them over the years. Here is the first one...
So, overall, the day was difficult yet happy at the same time. I didn't know how I would be emotionally, and thankfully the Lord brought me joy that day. I didn't expect that. I thought I would be a mess. As I was going throughout the day, I kept wishing that I was planning an actual birthday party for my son. I wished that I could see him smash his first birthday cake all over the place. But as I reflected on the day....I started wondering about what birthdays are like in Heaven. I'm sure he had the grandest party of them all! Way better than I could've pulled off!
My sweet boy, happy birthday! I can't wait until I can celebrate birthdays with you in Heaven and smash cakes together! We love you and miss you more and more each day.
Monday, January 11, 2016
Almost A Year
January 11, 2016
It's hard to believe. Has it really almost been a year since Luke's birth and death? Sometimes it feels like it was yesterday and some days it feels like it was a million years ago. It's hard to explain. It's a weird feeling.
Luke's birthday is on Saturday. Justin and I have discussed a little bit what we want to do that day. And we aren't quite sure. We've never lost a child before. We've never had to celebrate the birthday of a child who is in Heaven. What should that day look like? We don't know. I don't think there is a right or wrong way to celebrate and remember Luke. Whatever we end up doing, we will think of Luke every second and remember the sweet 6 1/2 hours we had with him.
We will also reflect on how the Lord has carried us this year as we had to face all the "firsts'". The first Mother's Day, first Father's Day, first birthdays without Luke with us. All of those moments we dreaded, yet God met us there and gave us the grace to get through each one.
Had things gone my way, I'd be planning Luke's 1st birthday party right now. I wouldn't be planning what to do on the 1 year mark of his birth and passing. The grief of that reality has hit hard this week as I've had moments where the tears just flow out of nowhere, and I have to beg God to get me through this week. And I know He will.
So as we approach this weekend, I'm thankful. I'm thankful that we've made it this first year. I'm thankful that we haven't abandoned our faith. Thankful that the Lord hasn't let us go and He is fighting for my heart. I need only be still.
It's hard to believe. Has it really almost been a year since Luke's birth and death? Sometimes it feels like it was yesterday and some days it feels like it was a million years ago. It's hard to explain. It's a weird feeling.
Luke's birthday is on Saturday. Justin and I have discussed a little bit what we want to do that day. And we aren't quite sure. We've never lost a child before. We've never had to celebrate the birthday of a child who is in Heaven. What should that day look like? We don't know. I don't think there is a right or wrong way to celebrate and remember Luke. Whatever we end up doing, we will think of Luke every second and remember the sweet 6 1/2 hours we had with him.
We will also reflect on how the Lord has carried us this year as we had to face all the "firsts'". The first Mother's Day, first Father's Day, first birthdays without Luke with us. All of those moments we dreaded, yet God met us there and gave us the grace to get through each one.
Had things gone my way, I'd be planning Luke's 1st birthday party right now. I wouldn't be planning what to do on the 1 year mark of his birth and passing. The grief of that reality has hit hard this week as I've had moments where the tears just flow out of nowhere, and I have to beg God to get me through this week. And I know He will.
So as we approach this weekend, I'm thankful. I'm thankful that we've made it this first year. I'm thankful that we haven't abandoned our faith. Thankful that the Lord hasn't let us go and He is fighting for my heart. I need only be still.
Tuesday, November 10, 2015
Let's Be Honest...
November 10, 2015
The last time I was getting my hair done, my friend Paige said...
"When are you going to blog again?!? You haven't for a while and you should because I love to read your posts".
To be honest, I didn't have any exciting "updates" or any amazing stories to tell, so my laptop has been sitting on our desk collecting dust. In fact, that's exactly what my life kinda feels like right now. Like I am sitting around collecting "dust" if you will, while we wait and see what God is going to do next in our lives. And to be even more honest, I didn't feel like writing anything. My blog has been centered around our son, so each time I sign onto Blogger, I'm reminded, again, that he's not here and the reason my blog exists is because my son is gone.
As I sat in my friends salon chair and told her...
"But nothing is really happening right now. What should I write about?"
She said...
"Write about what you're feeling; what's going on with your heart."
Ok. I'll do that.
I miss Luke. I HATE that he's not here. And in reference to the title of my post...I'll be honest, once again. I'm dreading Thanksgiving. I'm dreading Christmas. This would have been Luke's first holiday season. I walk around Target and see "My First Thanksgiving" outfits, and I hold back tears every time. I WANT MY SON HERE WITH ME.
Over the past couple months, I've really struggled with anger towards God. Do I feel that way even today? Yes. Since Luke's passing, I've tried really hard to not be angry. I've really tried to trust the Lord through every single hard moment and every single time I feel like giving up. But recently, I've just been angry. Angry that we lost Luke. Angry that we have struggled SO long to have a child. Angry that infertility exists. Angry that our IUI procedure failed last month. And on and on.
Ok, so how do I combat these emotions? Be in God's Word. Pray. Repeat! But sometimes I'm so burdened, I don't want to do those things. I don't feel like reading my Bible. I don't WANT to pray. I know in my head what will help me in this battle against anger, but my heart doesn't want it.
Wow. That was hard to type. Transparency. But, I feel like being honest with how I'm coping is better than putting on a happy face and pretending everything is fine. Everything isn't fine. Even though almost 10 months has passed since Luke died, it feels like 10 days. It's still so raw and painful.
For those reading this: pray for me. And Justin. Pray that God would continue to draw us to Himself. That He would help me with my feelings of anger. That I would look to Him in those moments when it feels like I'm drowning and the hurt overwhelms me. I just miss my boy. I want him in my arms more than anything. Until that day comes, I'll continue to think of him and be thankful for the 6+ hours we had with him.
The last time I was getting my hair done, my friend Paige said...
"When are you going to blog again?!? You haven't for a while and you should because I love to read your posts".
To be honest, I didn't have any exciting "updates" or any amazing stories to tell, so my laptop has been sitting on our desk collecting dust. In fact, that's exactly what my life kinda feels like right now. Like I am sitting around collecting "dust" if you will, while we wait and see what God is going to do next in our lives. And to be even more honest, I didn't feel like writing anything. My blog has been centered around our son, so each time I sign onto Blogger, I'm reminded, again, that he's not here and the reason my blog exists is because my son is gone.
As I sat in my friends salon chair and told her...
"But nothing is really happening right now. What should I write about?"
She said...
"Write about what you're feeling; what's going on with your heart."
Ok. I'll do that.
I miss Luke. I HATE that he's not here. And in reference to the title of my post...I'll be honest, once again. I'm dreading Thanksgiving. I'm dreading Christmas. This would have been Luke's first holiday season. I walk around Target and see "My First Thanksgiving" outfits, and I hold back tears every time. I WANT MY SON HERE WITH ME.
Over the past couple months, I've really struggled with anger towards God. Do I feel that way even today? Yes. Since Luke's passing, I've tried really hard to not be angry. I've really tried to trust the Lord through every single hard moment and every single time I feel like giving up. But recently, I've just been angry. Angry that we lost Luke. Angry that we have struggled SO long to have a child. Angry that infertility exists. Angry that our IUI procedure failed last month. And on and on.
Ok, so how do I combat these emotions? Be in God's Word. Pray. Repeat! But sometimes I'm so burdened, I don't want to do those things. I don't feel like reading my Bible. I don't WANT to pray. I know in my head what will help me in this battle against anger, but my heart doesn't want it.
Wow. That was hard to type. Transparency. But, I feel like being honest with how I'm coping is better than putting on a happy face and pretending everything is fine. Everything isn't fine. Even though almost 10 months has passed since Luke died, it feels like 10 days. It's still so raw and painful.
For those reading this: pray for me. And Justin. Pray that God would continue to draw us to Himself. That He would help me with my feelings of anger. That I would look to Him in those moments when it feels like I'm drowning and the hurt overwhelms me. I just miss my boy. I want him in my arms more than anything. Until that day comes, I'll continue to think of him and be thankful for the 6+ hours we had with him.
Thursday, September 17, 2015
Genetic Testing
Potter's Syndrome.
When Justin and I first heard those words, we had no clue what that meant. What does that even mean? Now we feel like PS experts. For those of you who aren't as familiar with it, Potter's Syndrome or Potter's Sequence, is a fatal syndrome that affects the kidneys, bladder, and ultimately the lungs. Around week 13 of pregnancy, the kidneys begin to develop. Luke's kidneys never did. From conception up until week 13, the baby is surround by fluid from the mother. Once the kidneys develop and start working, that fluid around the baby is now that baby's urine. The kidneys produce urine therefore making up amniotic fluid. Amniotic fluid is what develops the lungs. So, without kidneys, there isn't urine/amniotic fluid, which then makes it impossible for the lungs to develop and the baby won't be able to take in enough oxygen once born. So, what ultimately kills them is the lack of oxygen to their tiny bodies. It's a sequence of events that lead to a fatal outcome.
Once Justin and I got the news that Luke had this, we started asking more questions...
"Can this happen again?"
"Is this genetic?"
"Can we have another baby someday?"
My doctor was almost certain that this wasn't genetic. He told us and fully believed that our case was a complete "fluke" and what happened to Luke was an "accident". But as we and members of our family started doing some research, we did find some cases where PS was in fact genetic with other couples, and they had multiple children with the same syndrome. I couldn't just let that go. I couldn't imagine going through something like this again. If the chances of us having another baby with Potter's was significantly high...it would change our plans regarding having more children. We decided to pursue genetic counseling and see for sure whether or not Justin or I was a carrier for a certain gene that could cause this to happen again.
The first appointment we had was with a genetic counselor at Riverside Hospital back in March. She was a very sweet lady named Carolee. She went through our entire family tree, both sides, asking about each family member and if they had any type of genetic disorder. She got very detailed. There's nothing on either side. During our time with her, I flat out asked her...
"Of the Potter's Syndrome cases you've worked, have they typically been genetic?"
She said, "No."
Ok, well that's encouraging! We left that day somewhat encouraged.
By the end of that appointment, she told us that she'd like for us to go see a genetic doctor at Children's Hospital. For those of you who know Justin, you know that he has hearing difficulties. There's was one certain gene that links kidney issues and hearing loss. It's called BOR. The more Carolee heard about what Justin has, the more she wanted the higher up doctor to explore this connection. We got a referral to meet with Dr. Santoro. A couple months later, we met this doctor and she also went over our family history. She told us that we will need to do bloodwork and DNA testing because the day Luke was born, they only collected cord blood; not blood from Luke ONLY. Cord blood is a mixture of the mother's and the baby's DNA.
So, fast forward a couple more months. We wait and wait to hear back from insurance to determine if genetic testing is covered and approved by our insurance. We finally hear back that it's covered (praise the Lord!) and Justin can go give his blood to be sent off for testing.
They tell us that the results take 4-6 weeks. Ugh, really? We are wanting to try for another baby as soon as we can, and now we have to prevent for the next 4-6 weeks at least. Weeks 1, 2, 3 come and go with no news. Week 4 comes and I'm hopeful that they will get the results early. Week 5, nothing. Week 6 is here. It's a Wednesday. 6 weeks to the day that Justin gave his blood. It's also the same week last year that we found out the devastating news of Luke's condition. It was a very difficult week reliving those memories and emotions, yet also good to look back and reflect on all that the Lord had walk us through and how He never let us go.
My phone rings, it's Justin, and I'm wondering if that's why he's calling. I answer it and try to gauge the tone of his voice. Is he happy? Does it sound like he's been crying?
"Hey!"
"Hi. So, Dr. Santoro called...."
"Ok....and???"
"Everything came back normal. Negative for BOR or any other gene!!!"
Oh my, talk about complete and utter relief! And what perfect timing! In the midst of a very difficult week, the Lord orchestrated this good news to come right in the middle of that week. What if the news had been different? How devastating. I was not only relieved that we had the green light to try for another baby, but also very relieved that my husband didn't have to go through the emotions of thinking what happened to Luke was his "fault" in any way. It was in fact a fluke and NOT genetic. Thank you Lord :)
So, where do we stand now? We try again. We try to make Luke a big brother :)
When Justin and I first heard those words, we had no clue what that meant. What does that even mean? Now we feel like PS experts. For those of you who aren't as familiar with it, Potter's Syndrome or Potter's Sequence, is a fatal syndrome that affects the kidneys, bladder, and ultimately the lungs. Around week 13 of pregnancy, the kidneys begin to develop. Luke's kidneys never did. From conception up until week 13, the baby is surround by fluid from the mother. Once the kidneys develop and start working, that fluid around the baby is now that baby's urine. The kidneys produce urine therefore making up amniotic fluid. Amniotic fluid is what develops the lungs. So, without kidneys, there isn't urine/amniotic fluid, which then makes it impossible for the lungs to develop and the baby won't be able to take in enough oxygen once born. So, what ultimately kills them is the lack of oxygen to their tiny bodies. It's a sequence of events that lead to a fatal outcome.
Once Justin and I got the news that Luke had this, we started asking more questions...
"Can this happen again?"
"Is this genetic?"
"Can we have another baby someday?"
My doctor was almost certain that this wasn't genetic. He told us and fully believed that our case was a complete "fluke" and what happened to Luke was an "accident". But as we and members of our family started doing some research, we did find some cases where PS was in fact genetic with other couples, and they had multiple children with the same syndrome. I couldn't just let that go. I couldn't imagine going through something like this again. If the chances of us having another baby with Potter's was significantly high...it would change our plans regarding having more children. We decided to pursue genetic counseling and see for sure whether or not Justin or I was a carrier for a certain gene that could cause this to happen again.
The first appointment we had was with a genetic counselor at Riverside Hospital back in March. She was a very sweet lady named Carolee. She went through our entire family tree, both sides, asking about each family member and if they had any type of genetic disorder. She got very detailed. There's nothing on either side. During our time with her, I flat out asked her...
"Of the Potter's Syndrome cases you've worked, have they typically been genetic?"
She said, "No."
Ok, well that's encouraging! We left that day somewhat encouraged.
By the end of that appointment, she told us that she'd like for us to go see a genetic doctor at Children's Hospital. For those of you who know Justin, you know that he has hearing difficulties. There's was one certain gene that links kidney issues and hearing loss. It's called BOR. The more Carolee heard about what Justin has, the more she wanted the higher up doctor to explore this connection. We got a referral to meet with Dr. Santoro. A couple months later, we met this doctor and she also went over our family history. She told us that we will need to do bloodwork and DNA testing because the day Luke was born, they only collected cord blood; not blood from Luke ONLY. Cord blood is a mixture of the mother's and the baby's DNA.
So, fast forward a couple more months. We wait and wait to hear back from insurance to determine if genetic testing is covered and approved by our insurance. We finally hear back that it's covered (praise the Lord!) and Justin can go give his blood to be sent off for testing.
They tell us that the results take 4-6 weeks. Ugh, really? We are wanting to try for another baby as soon as we can, and now we have to prevent for the next 4-6 weeks at least. Weeks 1, 2, 3 come and go with no news. Week 4 comes and I'm hopeful that they will get the results early. Week 5, nothing. Week 6 is here. It's a Wednesday. 6 weeks to the day that Justin gave his blood. It's also the same week last year that we found out the devastating news of Luke's condition. It was a very difficult week reliving those memories and emotions, yet also good to look back and reflect on all that the Lord had walk us through and how He never let us go.
My phone rings, it's Justin, and I'm wondering if that's why he's calling. I answer it and try to gauge the tone of his voice. Is he happy? Does it sound like he's been crying?
"Hey!"
"Hi. So, Dr. Santoro called...."
"Ok....and???"
"Everything came back normal. Negative for BOR or any other gene!!!"
Oh my, talk about complete and utter relief! And what perfect timing! In the midst of a very difficult week, the Lord orchestrated this good news to come right in the middle of that week. What if the news had been different? How devastating. I was not only relieved that we had the green light to try for another baby, but also very relieved that my husband didn't have to go through the emotions of thinking what happened to Luke was his "fault" in any way. It was in fact a fluke and NOT genetic. Thank you Lord :)
So, where do we stand now? We try again. We try to make Luke a big brother :)
Tuesday, August 25, 2015
The 6 Month Mark
July 16, 2015 ~ Six Months Since Losing Luke
How is it possible? Has it really been 6 months since we said hello and goodbye to our sweet boy? Some days it feels like it's been 6 YEARS. It's gone fast, yet it's crawled by at the same time. As each "first" has approached since Luke passed away, this one was almost the hardest for Justin and I. Yes, Mother's Day was difficult, and so was Father's Day. And I'm sure Thanksgiving and Christmas will be too. But for some reason, the 6 month mark was extremely difficult. Half a year. He'd be crawling. He would be sitting up on his own. He might be teething at this point. My mind kept going to places and thinking about all that "He would have been's".
But God had other plans.
Rather than focusing on all the things we were missing out on, I tried to focus on ALL that God had taught us during the past 6 months. All of the ways He had carried us through each and every excruciating moment. The Lord had indeed carried us, He drew near to us, and He showed us that we can't make it through this life without Him.
About a week before the 6 month mark came, Justin and I thought it would be special to have people gather at his grave for a time of remembrance and reflection on God's goodness. We knew it would help us and encourage us to hear how God has worked in the lives of others in regards to Luke's death. So, that's what we did. We gathered, we shared, we cried, and we gave glory to the One who has walked through the fire right beside us. Hearing what God had taught those closest to us through this trial was so encouraging to hear. We know that the Lord intends trials in our lives for our good. Sometimes we really struggle with..."Where is the good in this?" Hearing people say things like...
"I pray more."
"I think about Heaven more."
"I know now that no matter what I face in this life, God will carry me through."
"God had drawn me closer to Himself."
"Because of Luke's life, I know someone who has changed their views on abortion."
Wow! Talk about encouraging! Our little boy has had an impact on others. His 6 1/2 hours of life has changed people. It's the Lord working through it, but if it weren't for Luke's life, these people wouldn't have been touched in this way.
In the days surrounding the 6 months mark, someone, I can't remember who, shared something with me that has really impacted me....
As hard as it is to think about all of the "would have been's", Luke was never supposed to do those things. He was never meant to crawl. He was never meant to start teething. He was never meant to sit up on his own. Luke's short life was EXACTLY how the Lord intended it to be. He lived a full and COMPLETE life! God doesn't make mistakes. He intended Luke's life to be exactly 6 1/2 hours long. He intended for him to pass away at 3:39am on January 17, 2015. And if everything the Lord does is GOOD, then Luke's life was perfect. My little boy's life was just as God intended it to be. PERFECT.
How is it possible? Has it really been 6 months since we said hello and goodbye to our sweet boy? Some days it feels like it's been 6 YEARS. It's gone fast, yet it's crawled by at the same time. As each "first" has approached since Luke passed away, this one was almost the hardest for Justin and I. Yes, Mother's Day was difficult, and so was Father's Day. And I'm sure Thanksgiving and Christmas will be too. But for some reason, the 6 month mark was extremely difficult. Half a year. He'd be crawling. He would be sitting up on his own. He might be teething at this point. My mind kept going to places and thinking about all that "He would have been's".
But God had other plans.
Rather than focusing on all the things we were missing out on, I tried to focus on ALL that God had taught us during the past 6 months. All of the ways He had carried us through each and every excruciating moment. The Lord had indeed carried us, He drew near to us, and He showed us that we can't make it through this life without Him.
About a week before the 6 month mark came, Justin and I thought it would be special to have people gather at his grave for a time of remembrance and reflection on God's goodness. We knew it would help us and encourage us to hear how God has worked in the lives of others in regards to Luke's death. So, that's what we did. We gathered, we shared, we cried, and we gave glory to the One who has walked through the fire right beside us. Hearing what God had taught those closest to us through this trial was so encouraging to hear. We know that the Lord intends trials in our lives for our good. Sometimes we really struggle with..."Where is the good in this?" Hearing people say things like...
"I pray more."
"I think about Heaven more."
"I know now that no matter what I face in this life, God will carry me through."
"God had drawn me closer to Himself."
"Because of Luke's life, I know someone who has changed their views on abortion."
Wow! Talk about encouraging! Our little boy has had an impact on others. His 6 1/2 hours of life has changed people. It's the Lord working through it, but if it weren't for Luke's life, these people wouldn't have been touched in this way.
In the days surrounding the 6 months mark, someone, I can't remember who, shared something with me that has really impacted me....
As hard as it is to think about all of the "would have been's", Luke was never supposed to do those things. He was never meant to crawl. He was never meant to start teething. He was never meant to sit up on his own. Luke's short life was EXACTLY how the Lord intended it to be. He lived a full and COMPLETE life! God doesn't make mistakes. He intended Luke's life to be exactly 6 1/2 hours long. He intended for him to pass away at 3:39am on January 17, 2015. And if everything the Lord does is GOOD, then Luke's life was perfect. My little boy's life was just as God intended it to be. PERFECT.
Subscribe to:
Posts (Atom)