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...
22 December 2012
Baby Luke in the NICU following birth
Dustin took this photo following baby's arrival.... The NICU doctors ordered this test immediately following his birth, a 12 lead monitor to track his heart.
Meeting our Baby with Down Syndrome
Luke wasn't officially due to arrive until January 9th, 2013, but my c-section was scheduled for a week earlier on January 2nd, 2013. Apparently, he didn't like either of those dates, so he chose his own and made an early appearance the morning of December 22nd, 2012 at 11:44 AM. He weighed in at 6 pounds 8 ounces, was 18 3/4 inches long and had a head circumference of 12 inches.
Our first photo with baby Luke in the operating room
A close up of our brand new little guy
Mommy's first time holding baby Luke - in the NICU following the c-section
Our first photo with baby Luke in the operating room
A close up of our brand new little guy
Mommy's first time holding baby Luke - in the NICU following the c-section
Heading to the Hospital
We're heading to the hospital! Although he's not due to arrive for almost two weeks, I think we might be having a baby today!
21 December 2012
False Labor?
It's 4:30 AM and I can't sleep.
Yesterday I was 37 weeks and 1 day pregnant and I saw my high risk doctor for a regular check up. All of the normal stuff checked out okay, I wasn't showing any impending signs of labor and we discussed "the plan" for baby's arrival as far as what time to be at the hospital the morning of January 2nd, where to go when we get there and what will happen after we arrive.
I began experiencing what I thought were Braxton-Hicks contractions around 10 PM last night and after a fitful few hours of rest (due to the repeating contractions), fully awoke around 2:30 AM to Matthew crying in his room.... while rocking him in my lap, I felt another contraction and decided to begin timing them after he went back to sleep. After an hour, I'd been having contractions that were lasting from 50 seconds to a minute and twenty seconds and were coming every 7 minutes apart.... not sure whether or not to be concerned, I called the labor and delivery department at our local community hospital and spoke with the doctor on call. She advised me that since my water hadn't broken, I should wait them out at home for at least another hour and if they increased in intensity (I'm calling them a 4 on a pain scale of 10) that I could head into the local hospital (and if I were in active labor, they'd transport me to Cleveland - although that process usually takes between 3 and 4 hours by the time they'd monitor me, get the paperwork completed for the squad and verify that I were stable enough to actually be transported), if the contractions remained the same or lessened in strength, I should come into the office in the morning and get checked or if my water were to break I should head straight to Cleveland as that's the planned destination for our delivery. Since speaking with her about an hour and a half ago, I've showered and have continued to monitor the contractions. They remain mostly unchanged, the intensity hasn't decreased, but hasn't increased enough that I'm overly concerned based upon what she had to tell me.
I am not ready to have this baby. My to-do list it still way to long and I haven't even begun to prepare to get me packed for an extended stay at the hospital nor do I have Matthew packed for his time away from home. I'm going to continue to rest/relax as the doctor suggested for now and if baby doesn't arrive this morning, today will be the day that I get the basics prepared for us to be away from home.
**Update** It's been almost 12 hours since I wrote this post and I went to the doctor this morning to get checked out... I'm happy to report that the contractions weren't productive and didn't cause me to dilate overnight. Hopefully I still have the 12 days I'm expecting to have between now and when the baby arrives and I can get to a place where I feel comfortable and ready to be away from home. My plan for tonight? Make some serious progress on that to-do list that has been haunting me!
Yesterday I was 37 weeks and 1 day pregnant and I saw my high risk doctor for a regular check up. All of the normal stuff checked out okay, I wasn't showing any impending signs of labor and we discussed "the plan" for baby's arrival as far as what time to be at the hospital the morning of January 2nd, where to go when we get there and what will happen after we arrive.
I began experiencing what I thought were Braxton-Hicks contractions around 10 PM last night and after a fitful few hours of rest (due to the repeating contractions), fully awoke around 2:30 AM to Matthew crying in his room.... while rocking him in my lap, I felt another contraction and decided to begin timing them after he went back to sleep. After an hour, I'd been having contractions that were lasting from 50 seconds to a minute and twenty seconds and were coming every 7 minutes apart.... not sure whether or not to be concerned, I called the labor and delivery department at our local community hospital and spoke with the doctor on call. She advised me that since my water hadn't broken, I should wait them out at home for at least another hour and if they increased in intensity (I'm calling them a 4 on a pain scale of 10) that I could head into the local hospital (and if I were in active labor, they'd transport me to Cleveland - although that process usually takes between 3 and 4 hours by the time they'd monitor me, get the paperwork completed for the squad and verify that I were stable enough to actually be transported), if the contractions remained the same or lessened in strength, I should come into the office in the morning and get checked or if my water were to break I should head straight to Cleveland as that's the planned destination for our delivery. Since speaking with her about an hour and a half ago, I've showered and have continued to monitor the contractions. They remain mostly unchanged, the intensity hasn't decreased, but hasn't increased enough that I'm overly concerned based upon what she had to tell me.
I am not ready to have this baby. My to-do list it still way to long and I haven't even begun to prepare to get me packed for an extended stay at the hospital nor do I have Matthew packed for his time away from home. I'm going to continue to rest/relax as the doctor suggested for now and if baby doesn't arrive this morning, today will be the day that I get the basics prepared for us to be away from home.
**Update** It's been almost 12 hours since I wrote this post and I went to the doctor this morning to get checked out... I'm happy to report that the contractions weren't productive and didn't cause me to dilate overnight. Hopefully I still have the 12 days I'm expecting to have between now and when the baby arrives and I can get to a place where I feel comfortable and ready to be away from home. My plan for tonight? Make some serious progress on that to-do list that has been haunting me!
16 December 2012
Accepting the love of others
Last week I was beginning to feel overwhelmed.
The baby will be here in a few short weeks, Christmas is around the corner with shopping, wrapping and decorating still needing completed in our house. My lower back and carpal tunnel syndrome have been creating significant pain and physical discomfort for me lately, keeping me from having a peaceful night's sleep in quite some time. Because of my back, Dustin has been transporting Matthew to and from the sitter pretty regularly and I've been noticing that Matthew has been choosing Dustin over me for playtime, comfort, kisses, etc. and while I've been grateful that Matthew has a father who loves him and that he can count on, I have to admit that it's made me feel a bit left out.
There was a short span of a few days last week where I felt pretty down in the dumps and really questioned if God had chosen the "right" mother to be our new baby's caregiver? Do I have it in me to learn all that will be required? Will I be the best advocate? How on earth will I manage therapy, more specialists and learning how to care for our new baby in addition to my already lengthy list of to-do's? I thought on it for a few days and had really been struggling with my level of confidence in myself.
Thursday evening, I was reminded that we're not in "this" alone. A couple who are long time friends of ours called the night before to see if we'd be home as they had something to drop off. We were looking forward to seeing them as it had been a while since we'd had a chance to visit. When Thursday evening rolled around, we learned that our friend had submitted our names and story to become beneficiaries of a fundraiser organized by she and her co-workers every year... we were selected as one of six families to receive a more than generous monetary gift to help us offset our upcoming expenses related to baby's condition. We were humbled, touched and grateful. We hope to be staying in Cleveland, either at Ronald McDonald House or if they are full, a local hotel to be near baby while he is in the NICU and their gift should really help us to manage that expense much easier.
After a bit of reflection, I was reminded that we are not in "this" alone. The love of Christ has constantly been shared with us through family, friends and even through the generous hearts of people we've never even met, just like from my friend's co-workers at Weaver Leather.
Love and support is all around, we just have to be open to accepting it!
The baby will be here in a few short weeks, Christmas is around the corner with shopping, wrapping and decorating still needing completed in our house. My lower back and carpal tunnel syndrome have been creating significant pain and physical discomfort for me lately, keeping me from having a peaceful night's sleep in quite some time. Because of my back, Dustin has been transporting Matthew to and from the sitter pretty regularly and I've been noticing that Matthew has been choosing Dustin over me for playtime, comfort, kisses, etc. and while I've been grateful that Matthew has a father who loves him and that he can count on, I have to admit that it's made me feel a bit left out.
There was a short span of a few days last week where I felt pretty down in the dumps and really questioned if God had chosen the "right" mother to be our new baby's caregiver? Do I have it in me to learn all that will be required? Will I be the best advocate? How on earth will I manage therapy, more specialists and learning how to care for our new baby in addition to my already lengthy list of to-do's? I thought on it for a few days and had really been struggling with my level of confidence in myself.
Thursday evening, I was reminded that we're not in "this" alone. A couple who are long time friends of ours called the night before to see if we'd be home as they had something to drop off. We were looking forward to seeing them as it had been a while since we'd had a chance to visit. When Thursday evening rolled around, we learned that our friend had submitted our names and story to become beneficiaries of a fundraiser organized by she and her co-workers every year... we were selected as one of six families to receive a more than generous monetary gift to help us offset our upcoming expenses related to baby's condition. We were humbled, touched and grateful. We hope to be staying in Cleveland, either at Ronald McDonald House or if they are full, a local hotel to be near baby while he is in the NICU and their gift should really help us to manage that expense much easier.
After a bit of reflection, I was reminded that we are not in "this" alone. The love of Christ has constantly been shared with us through family, friends and even through the generous hearts of people we've never even met, just like from my friend's co-workers at Weaver Leather.
Love and support is all around, we just have to be open to accepting it!
13 December 2012
36 Weeks and Counting
Today I had my last appointment with our cardiologist before we see her again following baby's arrival. She had some pretty awesome news for us! No, the heart defect hasn't miraculously corrected itself, but this may have been the next best thing! We've learned over the last few months that baby's heart has a mild imbalance, which had been potentially putting him at risk of eventually needing a single ventricle repair - a less than ideal fix. Also, there has been a slight regurgitation with one of his valves, not something that we've been overly concerned about, but have been monitoring nonetheless. Both of these issues looked much better today! While his heart is still presenting some imbalance, it's evened out some.. to the point that a two ventricle repair should be feasible and the regurgitation was not visible during today's echo! Wonderful news!
Following the echo, I had an appointment with our perinatologist. Today, we completed another ultrasound and we learned that the baby has gained almost 2 pounds since our previous ultrasound a month ago, with him now having an estimated weight of 5 pounds, 8 ounces! This should put him on track to weigh between 6.5 and 7 pounds at birth!
Following the echo, I had an appointment with our perinatologist. Today, we completed another ultrasound and we learned that the baby has gained almost 2 pounds since our previous ultrasound a month ago, with him now having an estimated weight of 5 pounds, 8 ounces! This should put him on track to weigh between 6.5 and 7 pounds at birth!
11 December 2012
Lessons Learned from a Twin
My baby brother is an almost senior at Ashland University. Tonight he brought a friend from school to visit with us whose twin brother has Down Syndrome. This guy was was awesome! He shared how growing up with his brother taught him some wonderful qualities (as I expected), like acceptance, to not judging others, the value of respecting people for their differences, etc. etc. He also shared that they are 23 years old and that following high school his brother completed a post-secondary college program that taught trade skills and that he has two jobs now, one at Taco Bell (which he loves because he gets to interact with people) and also at a workshop where he helps to make wooden benches. He told me how his brother loves having a routine and helps out a lot around the house, cleaning and making some of his own meals... his favorite food to cook is omelets! He also told us about a special olympics type of program called "challenger" in the Massilon / Canton area where he spent a lot of time growing up playing baseball and basketball (he also had AV Canal and the amount of exertion required for the challenger activites was appropriate based upon his heart) and how he's a huge Browns fan now. I was interested in any tips he'd have for us in raising our other son, Matthew and pretty much, he just suggested that we treat them both the same and bring Matthew up to love, care for and protect his brother.. all things we would have done anyways. He had such an amazing love for his brother and it was really encouraging and uplifting to learn about their lives!
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