We learned halfway through our pregnancy that our second son would not only have Down Syndrome, but that he would also have a congenital heart defect known as Complete Atrioventricular Canal Defect that will eventually require Open Heart Surgery. This is our journey...
30 October 2012
Flipping, flopping.... jumping all around!
This baby has been to the moon and back over the last few days... he has flipped, flopped and jumped all around in my belly! I hope that means he is getting stronger and that he will be a fighter with a will to live through all that lies ahead for him. Yesterday, there was a time when while sitting in our recliner, I could feel what seemed to be the outline of an arm or a leg pressed against the side of my belly. He was breech at our ultrasound last week, so I'm wondering if he's moved to a normal head down position now? I love feeling him wiggle around inside of my stomach and I can't wait for the day that I can hold him, cuddle him and kiss his wonderful little face!
25 October 2012
22 October 2012
Taylor's Tulip Time meets Welcome to Holland
A few years ago while traveling for work during mid-Spring, I landed in the town of Pella, Iowa. I just happened to arrive a week before their annual Tulip Time celebration and as someone who loves to garden, was deeply disappointed that my timing was off just enough that while the tulip blooms were up and almost ready to open, the display of color wasn't showing yet. As I learned more about their festival and the fact that they plant 75,000 new bulbs each fall for a spring display, I knew that I had to come back. The next year, I planned my trip to the area a little better and was able to enjoy Tulip Time after working for the day. While I was there, I toured the Vermeer Mill and the rest of the Historical Village and also the Scholte House. During my visit, I enjoyed learning about the history of Tulip Time in the town of Pella and I absolutely fell in love a pastry called the "Dutch Letter" from a bakery named Jaarsma. I strolled the streets and took in the sights of the man made canal, the boutiques and shops as well as the hundreds of homes decorated for spring with their yards full of tulips!!
I was inspired.
When I returned home, I sought out as much information as I could about growing tulips, where to source bulbs, how to plant and care for them, researched ideas on how to group them, etc. Some may say I was a bit obsessed.. just ask my husband. I purchased what I thought was a lot of bulbs from Brecks - 300 and planned my display. The day that I decided to plant the bulbs, I decided I needed a new pair of gardening gloves and made a quick trip to Lowes, where I found what else other than all of their tulip bulbs 90% off! These were much more economical than what I had already purchased from Brecks and I began to fill my cart. Soon it was heaping and eventually it was overflowing... and there were more bulbs still on the rack! The garden center manger noticed my excessive purchase and stopped to tell me that if I bought all of what was left on the rack, he'd add an additional discount on top of the already massive discounted price. That my friends is what led me to planting over 3000 tulips (and daffodils) that fall. As my friends were cursing our Ohio winter, I was grateful when the snow arrived and the ground froze.. that is after all what keeps the bulbs from rotting in the wet ground and forces them to bloom when the soil begins to warm in the spring. After a few months, the green sprouts began to emerge from the bleak winter flowerbeds and I began to plan my own Tulip Time celebration in North Central Ohio! I ordered Dutch Letters from Jaarsma and had them shipped to my home, prepared other baked goods and invited friends and family to visit and celebrate spring with us one Sunday afternoon. I have always looked forward to seeing my tulips emerge each spring and they have served as a wonderful reminder of the beauty of nature. I've included some photos of "Taylor's Tulip Time" below.
After learning that our son was going to be born with Down Syndrome, one of the first resources that was shared with me was an article written by Emily Perl Kingsley entitled Welcome to Holland... I was absolutely transfixed as I read each line. I loved Pella and I had actually dreamed of visiting Holland some day just to see their tulips. Obviously there is no guarantee that this child will love tulips as much as I do (or that "Holland" will always be a wonderful place to be), but the combination of my experience with tulips and reading Ms. Kinglsley's analogy really strengthened my faith around the fact that God had been leading me down this path long before I could have ever expected where he was taking me. Maybe I'm reaching a bit too far, but nonetheless it's brought me great comfort and has helped me to make some sense of our baby's diagnosis!
I was inspired.
After learning that our son was going to be born with Down Syndrome, one of the first resources that was shared with me was an article written by Emily Perl Kingsley entitled Welcome to Holland... I was absolutely transfixed as I read each line. I loved Pella and I had actually dreamed of visiting Holland some day just to see their tulips. Obviously there is no guarantee that this child will love tulips as much as I do (or that "Holland" will always be a wonderful place to be), but the combination of my experience with tulips and reading Ms. Kinglsley's analogy really strengthened my faith around the fact that God had been leading me down this path long before I could have ever expected where he was taking me. Maybe I'm reaching a bit too far, but nonetheless it's brought me great comfort and has helped me to make some sense of our baby's diagnosis!
17 October 2012
A Random Lady
I have spent the last three nights away from home attending a conference in Pittsburgh. We had great weather, I was able to spend much of the conference with a co-worker who I’m fortunate to call a friend and we even enjoyed some really great restaurants during our stay. I should also mention that I was able to do a decent amount of networking and learned some interesting new concepts that I can apply to my work and that all in all it was a successful trip! While I was able to make the short drive there with the company of my co-worker, fortunately for her, she went on to Boston for a few days of vacation following the conference and I was on my own for the drive home.
Admittedly, I was becoming pretty homesick since this was the first time I’d ever been away from our sweet baby Matthew for this sort of duration and I also missed my husband. In addition, we had closed on our new home a few days before we left for the conference and we are set to pick up the keys this Friday evening… that said, there is still much packing and cleaning that needs done in our current home as well as the work we have planned for the new place before we are ready to move in, including: painting, new flooring, new lighting and refinishing many of the ceilings! We also have to set up our utilities, move, get settled, and prepare for baby’s arrival… and have I mentioned that I have already used most of my vacation time from work?
On the drive home this afternoon, all of these things began running through my mind and I ended up landing in some self pity… which led to me beginning to worry and fret about baby. By the time I’d completed my drive home I was almost in tears and just wanted to pick up Matthew from the sitters so I could hug and love on him some for my own selfish comfort. My mom had completed some renovations at her store while I was away so I decided to take Matthew into town to take a peek at what she’d changed. It felt good to see her too and my mood continued to improve. While in her store a lady approached me and began questioning me about the pregnancy. How was I feeling? Were things going well? Is baby healthy? … Who is this lady, I wondered? I don’t know her and don’t feel like talking about this stuff that I’d spent a good part of the afternoon dwelling on… Then she asked if I’d be delivering at our local community hospital? I had been able to blow off the other questions and redirect the conversation, but how could I get out of this one? I’m not a fan telling lies, so I told the truth, that I’d be delivering in Cleveland… which you guessed it, led to more questions.. Oh really, why are you delivering so far away? Eventually I ended up sharing our journey and I sure was glad she had pushed me to that point! This “random lady” (I’d guess in her 60’s?) shared she had a brother with Down Syndrome (who had passed away a number of years earlier). We ended up talking for quite some time and hearing about how her brother helped to shape her life and experiences was amazing. I was uplifted by her stories and we talked about the importance of prayer. I continue to be amazed with the way God has helped me to connect with the right people at the right time throughout this experience. There is no such thing as fate…. I believe this is all part of a greater plan and it’s so amazing to see His plan unfolding in my life.
03 October 2012
26 Weeks Pregnant: Re-Capping Our Day at the Cleveland Clinic
Our day began at 5:45... up and at 'em: shower, prepare ourselves for the day, get Matthew up and packed for the babysitters and we were out of the house by 7:20. We left ourselves plenty of time to get to the Clinic as we weren't sure how much extra time we'd need for traffic and parking once we got downtown (and we even stopped for gas and McDonald's breakfast on the way). After circling the parking garage, we finally found a spot and began making our way to the main building.
Our first appointment of the day was a repeat fetal echocardiogram to take a look at baby's heart defect and verify it hadn't grown worse since our last appointment 6 weeks earlier. All in all, the appointment went well and we learned that baby's heart defect is still present, but is mostly unchanged. The doctor reminded us that his right ventricular chamber is considered to be mildly unbalanced as it is a bit smaller than the left side, also she found a new minor leak below one of the artery valves. She described the leak to be very minor and not something for us to worry about at this point. Following the fetal echo, we called our fetal care coordinator, who came to meet and walk us to the genetics department. While there we met with a genetic counselor who talked to us about baby's diagnosis... she shared lots of scary statistics about other health issues often related to Down syndrome and I left the appointment feeling discouraged and a bit upset. We then found our way to the cafeteria, which was an overwhelming experience. As a note to self: avoid the lunchtime rush and never, ever go to that place between noon and I PM again! After lunch we met back up with our fetal care coordinator and she led us on tours of the "special delivery unit", where baby will come into the world, the rooms in the recovery area where I will be moved to following delivery and of course the NICU and PICU areas. Following these tours, as we waited for our meeting with baby's surgeon, we were able to rest a bit in one of the familly waiting areas. As we sat there, I began to cry (again!) and Dustin proceeded to comfort me by putting his arm around my shoulders and he also reminded me that while baby is in these units... he won't be in our hands, but he will be in the hands of great nurses and doctors and he will be okay, we will manage and we will be home before we know it. During this conversation, I noticed a woman a few seats away from us look our way... she almost seemed as if she wanted to say something, but before should could, our coordinator came back and we were immersed in conversation with her again. We found out that our surgeon was in an operation with one of two twins that were born three days earlier. In place of the surgeon, we talked with the pediatric cardiac nurse practitioner who will be assigned to our baby after he arrives. She was very encouraging as we talked through questions and concerns and we left feeling good about meeting her. We agreed to schedule another appointment with our surgeon sometime within the coming weeks.
By this time, we'd been at the Clinic for over 6 hours and I was losing steam fast. The amount and complexity of information learned during the day combined with lots of walking and many peaks and valleys of emotions experienced were a lot to take in... and shall I remind you that I'm also pregnant! I began feeling warm, dizzy and tired and asked Dustin to stop in the gift shop before heading home to get something cold to drink with the hopes that it might help me to feel better. As we left the gift shop, I felt a hand on my shoulder and as I turned around, I recognized her as the woman we'd seen earlier in the day (the one that I thought wanted to talk to us). She proceeded to tell us that she overheard our conversation about our son being in the NICU following birth and wanted to let us know that her grandchild was born two weeks earlier with a congenital heart defect and was recovering in the PICU. She shared how her son and daughter in law were in our shoes, touring the facilities just a few months earlier and they also shared many of our same emotions and fears. Ultimately she told us that she wanted to encourage us and let us know that their family has had as good an experience as could be expected. She also shared that our surgeon was the same one who operated on her grandchild just a few days earlier and that he did a very good job on her grandchild's surgery. She also asked for our names and told us that she would pray for us. Dustin and I were both brought to tears and thanked her for stopping us to talk and for sharing her experience.
As I looked back on the day as we were driving home, I was struck by how life is so much about give and take and you never know what's in store for the future.... In my mind I thought about how God's love is shared through each of us and how it passes from person to person... I was overwhelmed by the enormity of the day, but when when it came down to it, the personal interactions with people we didn't even know and the love of Christ that came out through our experience seemed to really leave me pondering the whole day. There was so much to take in and process and I'm sure over the next few days, I'll continue to reflect and will have additional learnings from the day.
One logistical item learned: when we left the parking garge we were charged $10. I was upset as I had read earlier that the parking for patients was free. When we questioned the attendant, he shared that if you ask for a free ticket from the doctor you are seeing to verify you are a patient, you won't be charged. Next time, we'll be asking for that parking voucher!
Our first appointment of the day was a repeat fetal echocardiogram to take a look at baby's heart defect and verify it hadn't grown worse since our last appointment 6 weeks earlier. All in all, the appointment went well and we learned that baby's heart defect is still present, but is mostly unchanged. The doctor reminded us that his right ventricular chamber is considered to be mildly unbalanced as it is a bit smaller than the left side, also she found a new minor leak below one of the artery valves. She described the leak to be very minor and not something for us to worry about at this point. Following the fetal echo, we called our fetal care coordinator, who came to meet and walk us to the genetics department. While there we met with a genetic counselor who talked to us about baby's diagnosis... she shared lots of scary statistics about other health issues often related to Down syndrome and I left the appointment feeling discouraged and a bit upset. We then found our way to the cafeteria, which was an overwhelming experience. As a note to self: avoid the lunchtime rush and never, ever go to that place between noon and I PM again! After lunch we met back up with our fetal care coordinator and she led us on tours of the "special delivery unit", where baby will come into the world, the rooms in the recovery area where I will be moved to following delivery and of course the NICU and PICU areas. Following these tours, as we waited for our meeting with baby's surgeon, we were able to rest a bit in one of the familly waiting areas. As we sat there, I began to cry (again!) and Dustin proceeded to comfort me by putting his arm around my shoulders and he also reminded me that while baby is in these units... he won't be in our hands, but he will be in the hands of great nurses and doctors and he will be okay, we will manage and we will be home before we know it. During this conversation, I noticed a woman a few seats away from us look our way... she almost seemed as if she wanted to say something, but before should could, our coordinator came back and we were immersed in conversation with her again. We found out that our surgeon was in an operation with one of two twins that were born three days earlier. In place of the surgeon, we talked with the pediatric cardiac nurse practitioner who will be assigned to our baby after he arrives. She was very encouraging as we talked through questions and concerns and we left feeling good about meeting her. We agreed to schedule another appointment with our surgeon sometime within the coming weeks.
By this time, we'd been at the Clinic for over 6 hours and I was losing steam fast. The amount and complexity of information learned during the day combined with lots of walking and many peaks and valleys of emotions experienced were a lot to take in... and shall I remind you that I'm also pregnant! I began feeling warm, dizzy and tired and asked Dustin to stop in the gift shop before heading home to get something cold to drink with the hopes that it might help me to feel better. As we left the gift shop, I felt a hand on my shoulder and as I turned around, I recognized her as the woman we'd seen earlier in the day (the one that I thought wanted to talk to us). She proceeded to tell us that she overheard our conversation about our son being in the NICU following birth and wanted to let us know that her grandchild was born two weeks earlier with a congenital heart defect and was recovering in the PICU. She shared how her son and daughter in law were in our shoes, touring the facilities just a few months earlier and they also shared many of our same emotions and fears. Ultimately she told us that she wanted to encourage us and let us know that their family has had as good an experience as could be expected. She also shared that our surgeon was the same one who operated on her grandchild just a few days earlier and that he did a very good job on her grandchild's surgery. She also asked for our names and told us that she would pray for us. Dustin and I were both brought to tears and thanked her for stopping us to talk and for sharing her experience.
As I looked back on the day as we were driving home, I was struck by how life is so much about give and take and you never know what's in store for the future.... In my mind I thought about how God's love is shared through each of us and how it passes from person to person... I was overwhelmed by the enormity of the day, but when when it came down to it, the personal interactions with people we didn't even know and the love of Christ that came out through our experience seemed to really leave me pondering the whole day. There was so much to take in and process and I'm sure over the next few days, I'll continue to reflect and will have additional learnings from the day.
One logistical item learned: when we left the parking garge we were charged $10. I was upset as I had read earlier that the parking for patients was free. When we questioned the attendant, he shared that if you ask for a free ticket from the doctor you are seeing to verify you are a patient, you won't be charged. Next time, we'll be asking for that parking voucher!
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