Our first night home!

We were released from the hospital today! I sat in the back seat and watched Luke sleep the entire way home from Cleveland.  When we got home Matthew was so excited to see the three of us!  His greeting was really awesome!  He was also excited to see his baby brother!  Again, he sat in my lap and peered at Luke and petted him over and over!

We are so excited for Luke to be out of the NICU and to be home!!

Day 6 in the NICU

Tomorrow will be a full week inside the walls of the Cleveland Clinic. So far this experience has been much better than I expected. Up to this point, baby doesn't have Hirschsprung Disease nor any other health complication that we are aware of except for his heart defect, which we were already prepared to deal with.

We were fortunate last night and tonight as well to be allowed to stay in a special room in the NICU called the Transition Room, usually reserved for families to share with their babies the night before they are scheduled to be discharged. I'm not 100% sure why they offered us this room as we had been set to stay at Ronald McDonald after I was discharged, but it doesn't really matter because its been really great to stay overnight with our baby. We've actually been in this room with him since 9:00 AM yesterday and its been a real blessing to have the opportunity to snuggle with him all day and to nurse on demand instead of following the rigid NICU feeding schedule... I'm not sure we could have a baby in the NICU and have a more natural feeling experience.

Tomorrow Luke will have his fourth echocardiogram since birth, with the others occurring this past Saturday, Monday and Wednesday. The reason he's had so many is because his Patent Ductus Arteriosus (PDA) within his heart is still open.

On both Monday and Wednesday, each day revealed that the PDA had shrunk some, but that it was in fact still open. Tomorrow we will be looking for the valve to have shrunk more, ideally it will be completely closed. The PDA as a defect is concerning, but Luke's cardiologists seem more concerned with how the closure will affect the final measurements of the right and left ventricles of his heart, which could necessitate a single ventricle repair versus a dual ventricle repair of his AV Canal. The single versus dual repair would be due to him having a mild imbalance in the sizes of the right and left sides of his heart... If the smaller side is too small to handle the appropriate amount of blood, it will be considered basically useless and the repair will be made incorporating only one side of his heart, known as a single ventricle repair. As of yesterday's echo, our cardiologists continue to believe that a double ventricle will be feasible, so hopefully tomorrow's echo will find the PDA to be closed and will verify our plan of a double ventricle repair.

We are getting geared up tonight to watch about an hour and a half worth of videos covering the topics of carseat safety, infant CPR and back for sleeping. Luke will also be receiving his Hepatitis B and RSV vaccinations tonight. Seems so odd to be giving shots in the evening... Similar to last night, he was circumcised at 9 PM! Life in the NICU is different than anywhere else!

Today I also was a bit concerned that my incision was becoming infected as it was warm to touch, I noticed that the steri strips were wet from some drainage and also the wound underneath appeared to be separating in the middle some. We called down to the SDU to see if one of the doctors would take a look at it and fortunately my doctor had just completed a c-section and was in the unit. He took a look at my incision and validated that it looked okay. With that peace of mind, we returned to the transition room.

Also today, our social worker came in to visit and shared information with us about Help Me Grow and the importance of early intervention. She also obtained prescriptions for Luke for both physical and occupational therapy from our neonatologist.

A prayer for an unknown family

We learned this morning that one of the babies that our nurse was assigned to passed away. My heart is so heavy for the loss of this child's future and for the grief that the baby's family is surely enduring at this moment and will probably carry for quite some time, likely forever...

Lord, please accept this baby with open arms in heaven and allow his or her family to find comfort in knowing that all of the baby's pains and physical stresses have been eliminated.  Help them to have faith in your presence and to find your peace that passes all understanding. Amen.

Surprise Christmas Presents

Luke was the beneficiary of a few special gifts on Christmas day... we don't know who the gifts came from, other than they were donations for children spending Christmas in the NICU.  He also received a handmade card from a child in a school that neighbors the Cleveland Clinic.

How thoughtful and many thanks!

A Special Christmas Gift: Brothers Meet for the First Time

Our first time as a family of four!!

Matthew met his baby brother Luke today!  What an awesome Christmas gift!  He was a little bit jealous and a lot excited.  He alternated the two emotions by both giving me a pouty face and then he'd repeat "Baby Lu" and "Brud-ber" while he was smiling!  He also wanted to sit on my lap and pet Luke, pick him up (which I didn't let him do, although he tried!) and he kissed his belly.  Our visit was short - maybe only 40 minutes, but it was the most memorable Christmas I've ever had!

Me and my two babies!

Christmas Eve at the Cleveland Clinic

On the bright side, I'm here with Dustin and baby Luke. But after seeing all of our friends' posts on Facebook tonight about attending Christmas Eve service at church, pics of their kids wearing matching Santa jammies, plates of cookies and milk sitting out for the bearded guy and comments about being excited to wake up in the morning to celebrate with their families, I'm left feeling a bit sorry for myself since we are missing all of those things with Matthew tonight. Fortunately he attended church tonight with family, so that's at least reassuring, but I can't help but feel a little sad that we are stuck up here away from home. Hopefully tomorrow will make up for it since Matthew will be visiting us in the hospital and even better we will get to introduce him to his baby brother and on top of all of that, we will for the first time get to spend our first few moments together as a family of four!

For tonight however, I will just have to be happy with sitting in my hospital room watching Americas Funniest Home Videos Christmas Edition and the Duck Dynasty Christmas Special with Dustin knowing that our sweet new baby is safe and comfortable in another wing across the hospital and that our big boy is in the care of loving relatives. While I may be a bit envious of all my Facebook friends and their cozy family time tonight, I'm reminding myself that the spirit of Christmas isn't about Santa, it's about the birth of Baby Jesus and the story of God's love. Maybe more than ever, I know first hand tonight that God loves me... I have been blessed with a loving husband, two beautiful boys and a heart full of hope for our future!

Merry Christmas to you tonight, wherever you may be!

Mommy's First Impression

We've known for a few months that our son would have Down Syndrome.

I've had so much curiosity over what he might look like and to be honest I've been a bit terrified that he wouldn't look right to me or that I wouldn't think he was as beautiful as his big brother. In that first moment when I had a chance to look at his sweet little face, Down Syndrome was the last thing on my mind. He was so tiny and beautiful and I'll never forget how his little lips were pursed together and he kept sticking his teeny red tongue out over and over. Actually, upon my first impression, I couldn't even make out any facial features that indicated that he in fact did have Down Syndrome.

After a few hours when I was finally out of the recovery room and allowed to meet and hold baby Luke, I had a chance to complete a more thorough inspection.... I noticed some physical traits that I had read about as being consistent with Down Syndrome, including an unusually wide space between his big toe and second toe, his neck is quite short and the back of his neck is thicker than you'd expect to see. Furthermore, his ears are almost flat against his head and they seem to be set a little lower than usual. I didn't realize it was possible to have some but not all of the physical signs, but his eyes don't appear to have the tell-tale slant yet nor does he have the single palmar crease that I've read about over the last few months.

When I look at baby Luke I don't see Down Syndrome. When I look at baby Luke, I see a wonderful creation given to our family. I see a life with hope for the future. I see a baby who needs a family and likewise, a family who needs a baby. I see a son, a brother, a nephew and a grandson.

I'm not scared anymore about what the future might hold. I'm excited about the prospect of raising another child, I love being a mother and can't wait to nurture and raise the gift that God has given us. I DO think that baby Luke is every bit as beautiful as his big brother... we are extremely blessed to be parents of two awesome boys!

Baby Luke: 48 Hours Old

Baby Luke is 48 hours old.

He seems to be gaining some comfort with nursing, although his NG tube is still in since he seems too tired to eat sometimes. 

Baby Luke with his NG Tube

Cardiology was in for him this morning and it was really awesome to witness 3 cardiologists in one of the best heart hospitals pushed up around his isolette completing and discussing the results of today's Echocardiogram.  Apparently the PDA hasn't closed yet, although its getting smaller... As of now, this will be our barrier to getting out of here as how it closes will give us some real definition around how the heart will need repaired and exactly when we expect the surgery to take place.

Also, we had a disappointing result with his hearing screening... he didn't pass his hearing test for either ear  and will be referred to an audiologist for a comprehensive follow up exam following his discharge to verify his hearing.

Genetics was also in this morning. Our geneticist seems to be hopeful that Luke might have the mosaic form of Trisomy 21 as he doesn't have all of the physical features you'd expect to see in a baby with down syndrome.  Mosaic Trisomy 21 is the rarest form of DS, only occurring in 2%-4% of individuals with the anomaly.  Research has shown that children with mosaicism reach certain motor milestones earlier than children with typical DS, such as crawling and walking alone. However, the speech development was equally delayed in both groups. On average their IQ has been found to be between 10 and 30 points higher than individuals with typical DS.  We won't know the actual results until the karyotype test comes back in 7 to 10 days. (**Update** The karyotype results did come back and Luke doesn't have Mosaic T21, he has full strength T21, although we still don't know if it's nondisjunction or translocation - we should find that out at our next appointment with the genetics team.)

We got a special approval today from the NICU director to allow Matthew in the unit tomorrow for 30 minutes to meet baby brother Luke for the first time on Christmas day.

Welcome Luke William!

Our second son is officially 24 hours and 8 minutes old... We've experienced a whirlwind over the last few days!

Around 10 PM Friday evening, the contractions started again... Considering I'd been checked that morning and wasn't dilated, I wasn't too concerned. I took a hot bath attempting to relax and after getting some relief, went to bed close to midnight. I awoke around 2 in the morning with painful, but manageable contractions and began timing them... They were consistently between 5 and 7 minutes apart and slowly became more painful, although I was able to breathe through them okay. By 3:30 I had started bleeding and decided to contact our planned delivery destination, the Special Delivery Unit at the Cleveland Clinic. The nurse transferred me to the doctor on call and after a short consultation, we decided that although my water hadn't broken, it was best to come to Cleveland to get checked as if I were to go to our local community hospital, it would likely have taken them 3 to 4 hours to get me transported via squad or life flight as the local doctors would have had to check me, make sure I was stable enough for transport, complete the paperwork and place the order for the transport, etc, etc.

We called Uncle Bob and Aunt Elaine to come stay with Matthew and also called our moms to let them know what was going on. Kyle came to get our dog Nelson and we were all set. Although I had planned to pack the night before, instead my mom came over and we sterilized bottles and continued to do more decorating at the new house. Dustin did put the pack and play together so baby has a place to sleep in our room when we get home, but as far as completing my goal of getting us packed and ready to leave... I didn't make much (or actually any) progress!

While we waited for family to arrive, Dustin and I got packed for the hospital... And it wasn't real fun completing the chore while I was having contractions! By the time we were finished, our reinforcements had arrived and we were on the road by 5:50 am. We'd had snow and freezing rain the night before and fortunately we had a short drive to get to 71. The back roads were less than ideal but the interstate was in good shape and we made it to Cleveland in about an hour... The easiest trip we've ever had getting up here... There was literally no traffic before sunup on a Saturday morning!  The only annoying part of the trip was that it seemed that during every contraction on the way up, we would drive over the bumpiest overpass on the highway in our truck that already rides a little rough, which made the contractions pretty awful!

On the drive up, we decided to valet the truck to save time, but the Clinic appeared to be running on a skeleton crew so early on a weekend morning and Dustin ended up parking it right in front of the main entrance and pushed me in a wheelchair to our destination. When we arrived at the SDU, they were ready for us and we were lucky to be the only patient in the unit. I was dilated 4 cm and was 100 percent effaced and by the time we settled in our room at 7:30, the doctor on call shared that we'd be having our baby shortly. He contacted our high risk doctor who asked us to wait for him to complete another c section he was getting ready to begin so that he could be there to deliver our baby. While we waited for him to arrive, we met with doctors from the NICU and pediatric cardiology as well as our anesthesiologist. The nurses in the SDU were awesome and they really helped me to feel comfortable and safe. After the doctor arrived, we had a short visit with him and I was able to walk to the operating room for my spinal. The spinal tap was really easy for the Anesthesiologist to administer and it was quick and basically painless. As compared to the epidural I had last time, I thought the spinal offered a better block and the surgery was much less uncomfortable than I remembered from the last time. The whole operation took about an hour.

When the nurse let me take a peek at Baby Luke, my first thought was that he looked a lot like Matthew (and Dustin, too) and I was struck that he had red hair! The nurse took him to another room and we were glad that we could hear him crying from a few rooms away! His apgar scores were an 8 and a 9 and he was stable enough that the nurse brought him back in the operating room so we could take some photos and see him again. Shortly afterwards, Dustin accompanied Luke and his entourage to the NICU where they weighed and measured him (he was 6 pounds 8 ounces, 18 3/4 inches long and had a head circumference of 12 inches) and also hooked him up to a 12 lead heart monitor.

Following my c section, I went back to my room in the SDU for a few hours to recover and before moving to the new unit where I will remain for the remainder of my admittance, the nurses snuck me into the NICU to hold the baby and make our first attempt at nursing.

I am still in shock that we have added another member to our family... Life is so incredibly amazing and the fact that two people can create another life is such a wonder. I am in love with baby Luke! I can't wait to get back over to the NICU and hold him again!

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

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!

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!

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!

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! 

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!

Hiccups

I'm 33 1/2 weeks pregnant and yesterday morning, baby had hiccups for the first time! I felt them on the upper right side of my belly and they lasted for maybe around 3 minutes! I know that Matthew had them some towards the end, but I don't really remember any of it, so its pretty special to be experiencing it again!!

Baby, You Are Loved

Dear Baby Luke:

A couple of nights ago, your brother was visiting with your Grammie Dawn while your dad and I were at a wedding reception.  When I went to pick him up afterwards, your Grandma shared a pamphlet with me that a neighbor had given her from the National Down Syndrome Society advertising an annual calendar they publish.  The brochure had pictures of babies with Down syndrome on it.  I managed to hold Matthew on my lap, even though my belly has grown large enough now that there is barely room for all three of us in one chair!  As I looked through each of the pages within the brochure, I was so touched as I watched your big brother unexpectedly bend over and offer kisses to the babies on the pages.  He also kept repeating his version of the word baby, which currently comes out as "bay-be".  The acceptance and love he already has for you was so heartwarming for me as I contemplate my future of being a mom to two boys.  I hope he is always able to maintain his love for others, especially for you, his baby brother!  As the two of you grow and learn from each other over the years, I will pray that you are able to build and nurture a special relationship that lasts a lifetime.

I'll love you forever,
Mom

Blessings Abound

A few days ago we had a follow-up with our Peri, the baby's cardiologist and we also met his cardiac surgeon.  Baby wasn't positioned well and we didn't get a print out of the 3D ultrasound, although we were able to see a few views of his face on the monitor and Dustin was pretty convinced that baby looks a lot like his big brother Matthew! 

As has become typical with our experiences with the Cleveland Clinic, our doctors have always been kind, knowledgeable and confident and we continue to learn more about baby's condition and become more prepared for his arrival.  That said, with each visit, God has always put someone in place for us to meet and uplift us during our experience.  This time it was a family with a 5 1/2 month old son who has the same heart defect (although his seems to be more complex than we think we are facing at this point) and who also has Down syndrome.  The baby was gorgeous and his parents were equally as amazing... mom was beautiful, put together and composed and dad was holding the baby, reassuring him that he was going to be okay, although his breathing sounded congested.  In my first few seconds of observing this other young family, I was so incredibly encouraged that we might be okay too.  I desperately wanted to talk to them, but even my generally talkative self was at a loss for words.  What do you say?  I whispered to Dustin at least 10 times, "I want to talk to her, what should I say?"  As usual, he rescued me by looking up at the mom and calmly asking her if her baby had a heart defect?  She was really sweet and responded with yes, it was AV Canal (and then she included a chain of acronyms and diagnosis laden words that haven't become a part of my vocabulary yet) and we talked a bit about his surgery, which had been completed 2 weeks earlier at Boston Children's Hospital.  Then she was called back by the nurse and I was saddened that she had to leave.  Such a wealth of knowledge and experience and someone who was close to my age, with a baby, also close in age to our son due in just a few weeks.... I was completely shocked when a few minutes later, she returned to the waiting room to deliver a piece of paper with her name, phone number and email address for us.  She said she'd love to talk sometime and encouraged us to reach out to her.  I emailed her last night and we exchanged a few messages today.  What a blessing for us to have connected to someone who has offered me such an amazing vision of hope!  She and I have also connected on facebook and it's pretty awesome to follow their path.  Blessings abound for our family (and their's too), we just have to be open to accepting them!

32 Weeks - Update

Tomorrow we travel yet again to the Cleveland Clinic for another fetal echocardiogram, an appointment with our perinatologist (and a 3D ultrasound!!) and also a meeting with the baby's heart surgeon. 

During our last fetal echocardiogram, the doctor noticed that the baby had a small leak associated with one of his heart valves.  She also reminded us that his heart has a mild unbalance, with one side (possibly the right) being larger than the left.  In addition to the holes associated with the CAVC, I'm anxious to learn if either of ant of these issues has gotten worse (or possibly better ?).

My only real questions for the perinatologist center around the baby's perceived low weight (last we knew, he was in the 17th percentile) and what I can do to help him gain?  Also, my regular OB doctor suggested that we'll likely be beginning weekly surveillance to monitor his heart and blood flow.  Lastly, I'm interested to know if my c-section has officially been scheduled?

For the doctor set to complete baby's heart surgery, I've found the following questions on the internet to cover during our consultation tomorrow:

Questions about the surgery itself:

1. What symptoms make this surgery advisable?
2. What will likely happen if the operation is not done?
3. How will the operation improve health or quality of life?
4. Are there any common complications after the operation?
5. Who will be the patient's cardiologist at (name of hospital) ?
6. How long does the surgery usually take?
7. What's the average length of hospital stay?
8. What kind of follow-up is expected after the procedure?
9. What type of long-term follow-up does one need in the years after surgery (i.e. doctor visits, echos, EKGs, etc.)?
10. Are there any restrictions in lifestyle post-surgery? Weight lifting, high impact sports, or sports of any kind?
11. How do we go about setting up a consultation appointment with the Surgeon?
12. Will the patient need to accompany us to the consultation?
13. Is this a teaching hospital?
14. Who will be doing the surgery? How many surgeons will be in the room?

*** -Note- *** At most teaching hospitals, the senior residents can do all, or a significant part, of the surgery. If you want to be sure that a particular surgeon does the operation, make sure you have it placed in writing in your chart that Dr. (name of surgeon) is to be your primary surgeon.
  Questions about the surgeon & rate of success:

1. How many (name of surgery) have you done? On adults? On children? On infants under the age of 1? (depending on your particular situation)
2. What has been your success rate? Do you know about long-term success rates?
3. What area do you specialize in? Adult, child, or infant cardiothoracic surgery?
4. How many total heart surgery procedures are done at your hospital each year?
5. What is the overall mortality rate at your hospital?
6. What type of certification do you have? Board certified? Approved by the American Board of Specialties? Fellow of the American College of Surgeons (F.A.C.S.)?

Other Questions Regarding Pre-Op and Post-Op Care:

1. Can parents accompany child to the operating room until they are asleep and can they be in the recovery room when the child awakes?
2. What is 'Plan B' if the surgery cannot be performed for some reason?
3. What would have to happen for you to revert to 'Plan B'?
4. What do you do for blood transfusions - do you take donor blood before surgery? Can family members donate?
5. What type of materials are you going to use (Gore-Tex, human, porcine (for valves), mechanical (for valves) or other)?
6. What will you do for nausea - will you give medication to treat it? How liberally?
7. What will you give for pain meds? How liberally?
8. What kinds of post-op medication will you have the patient on (e.g. aspirin, blood thinner, blood pressure med, etc.)? For life, or approximately how long?

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!

29 Week Ultrasound Photos

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!

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.

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!

A Mother's Perspective...

I found the video below while on You Tube watching videos about Down syndrome.  I found this mother's relay of her experience truly beautiful.  

Level II Ultrasound at 25 Weeks

This morning, Dustin and I met with our Perinatologist to complete our second Level II Ultrasound.  We learned early on that miscarriage (defined as loss of the fetus prior to 20 weeks gestation) is common for about 75% of babies with Down syndrome.  Once you reach 20 weeks, the correct terminology is actually stillbirth, which occurs in about 10% of the babies that make it past 20 weeks.  Apparently the reason for death is unknown and unpredictable so it's not something that we can attempt to manage prenatally.

So, the purpose of our Level II Ultrasound today and going forward (I have another scheduled at 29 weeks) is to monitor baby's growth and verify that things seem to be progressing forward.  Our Peri told me this morning that if we get further down the road and baby's growth stops or slows down substantially, we may decide to deliver him sooner than planned, however wouldn't want to take him before 35 or 36 weeks.

Fortunately our little guy seems to be doing as well as expected and nothing new or "worse" seemed to present itself during the ultrasound (although we do have another fetal echocardiogram next Wednesday, so we'll get a much more in depth look at his heart then).  He was estimated to weigh about a pound and a half, which is normal for this gestational age.  As a bonus, we were able to bring home a few new ultrasound photos of our sweet little guy!

Feeling Baby's Movements at 24 Weeks

Up until 18 weeks gestation, we were under the impression that we were expecting a "typical" baby.  We found out at 18 weeks, 2 days that we were expecting what we believed to be a "typical" baby boy and then 3 days later, we discovered the abnormal 18 week quad marker screening results and since then we've been in a spiral of discoveries and emotions.  While I've felt relatively optimistic about our future and we've been surrounded by an abundance of support, I've had my fair share of days where I've experienced depression, sadness, excessive crying, etc.

Feeling the baby move has brought back the sense of joy I had about our pregnancy before we found out about the baby's heart defect and Down syndrome.  The movements have been God's special reminder that the life He has chosen to give us is growing and thriving inside my body.  I've been feeling him move since about 20 or 21 weeks gestation but the movements have grown in intensity over the last couple of weeks to the point that Dustin was even able to feel the baby move this morning!

I am so excited to meet this little baby (in due time, of course) and am looking forward to watching him grow and helping him to learn in the months and years to come.

We are blessed.

The Fortune Teller

Today I am 21 weeks and 2 days into my second pregnancy.

Our first son, Matthew (who continues to live up to the meaning behind his name on a daily basis "Gift of God") was born a healthy 8 pounds, 12 ounces and just celebrated his first birthday 12 days ago on August 19th.

Five days before his first birthday party, my OB doctor called to let me know that although my "Quad-Marker" screening results came back negative at 12 weeks gestation for Down Syndrome (DS),  the follow up results at 18 weeks came back abnormal with a 1/85 risk for Trisomy 21, which is more commonly known as DS (normal results for a mom my age - 30, are 1/650).  She suggested that I follow up later in the week with a "high risk" doctor who routinely travels from Cleveland Clinic's Hillcrest Campus to work with high risk pregnancies in my area.  We scheduled that appointment, a Level II Ultrasound for Wednesday, just a few days later.

During that appointment, just two days before Matthew's birthday party, we learned that the high risk doctor suspected our second child had Complete Atrioventricular Canal Defect or CAVC for short as well as Down Syndrome or DS.  Apparently CAVC is present in about 50% of babies with DS and considering that our Level II Ultrasound showed a 6 MM thickness behind baby's neck combined with me having the "abnormal" blood work results at 18 weeks, all of the "facts" were pointing in that direction. That evening, my regular OB doctor called me from her home to check in on me...  She is so compassionate and wonderful and I have been very fortunate to have her as my doctor.  During our conversation she wanted to know if we had any questions and in general, it was so comforting to speak with her during an evening when I felt so confused and upset.

The next morning I worked from home and called my boss to share with her what had happened the day before.  Looking back, it probably wasn't fair of me to call her... she was only the fourth person I had shared the news with behind my mom, my husband and our doctor and because of that, I believe she may have received a very emotional and admittedly, my worst delivery - fortunately, I don't think she held it against me!  She was so kind and told me to take the day off, which after a few short hours of completing something that needed done, I did... which was wonderful since all week during the evenings, I had spent most of the week researching "What is DS?", "Level II Ultrasound", What is CAVC?", etc. instead of preparing for Matthew's 1st Birthday party, which was scheduled for the next day. My mom ended up taking a vacation day from work (after I called her at 7:30 AM sobbing) and she spent the day with Matthew and I running errands for the party (which turned out really wonderful, if I must say so myself).  I can recall 3 instances on that Friday when I lost total control of my emotions and truly wept.  Looking back I am [almost] humored as I think of times when I was listening to myself cry and though to myself, "did that sound just come out of my throat?"  It was the first time in my life that I've every truly sobbed out of helplessness, fear, hurt and disappointment.  I mean, I had already conceived, carried and delivered a healthy child, how could this be happening to me? My eyes burned for two days afterwards.  My mother cut up fruit and made vegetable trays for the party and helped me to stay on task that evening, even staying at our house until 11:30 PM when we finally finished the centerpieces, mason jars filled with rice that held doubled sided signs with pictures from Matthew's first year which were held up by dowel rods.  I am blessed that she is not just my mom, but also my best friend.

Although I'm tiring of repeating this story over and over, I'll continue with what's transpired since so I can set a baseline for what's happened over the last few weeks as I believe it will be important for me to continue writing during the months and years ahead as I continue throughout this experience.  Furthermore, I know I will experience lots of personal growth and it might actually be interesting to look back at the unnecessary fears I had as well as in my ignorance of what's to come, the big things that I never even thought of.

The week following Matthew's party, Dustin and I traveled to the Cleveland Clinic Main Campus to meet with a Pediatric Cardiologist who performed a Fetal Echocardiogram to make the "official" diagnosis of baby's heart defect.  The high risk doctor had described the defect so well to me the previous week that I could see it as plain as day on the ultrasound monitor.  Silent tears streamed down my face and I had to stop watching the monitor.  Never in my life would I have believed that I wouldn't be able to watch my unborn child during an ultrasound.  I had looked forward to every ultrasound I had ever had with Matthew and honestly I had looked forward to every one I had for this child up to that point.  Life is such a miracle and to see your baby swimming around on the big screen... could there be anything more wonderful to an expecting mother? The doctor showed me how to change the channel on the TV and for the next hour I watched some stupid game show instead of my sweet baby.  I feel guilty for that now, it was selfish of me to be so consumed with my own feelings when I should have been praising God that my child had already defeated the odds and eluded the high rate of miscarriage for babies with DS.  For him, making it to 20 weeks at that point was a feat in and of itself.  Following the ultrasound, the doctor shared with us her confirmation that our baby had CAVC and we proceeded to discuss what lie ahead in our future... We'd be coming back at 26, 32 and 36 weeks to perform additional fetal echocardiograms as well as coming back to meet the surgeon who would be performing baby's open heart surgery and tour the Neonatal Intensive Care and Pediatric Intensive Care Units, also known as NICU and PICU departments.  We continued our day with a trip to Cleveland Clinic's Hillcrest Campus where our high risk doctor was scheduled to perform an amniocentesis as we had decided we just wanted to know if the baby did or didn't have DS.  Before we actually completed the amnio, the doctor shared an additional option with us, called the "Verifi" test, an experimental blood test that would isolate my DNA from baby's DNA and test his for the presence of an extra 21st chromosome - we elected this test over the amnio due to the amnio's slight risk of miscarriage. Dustin and I ended the day with a 3PM lunch at Cheesecake Factory before making the hour long trek home.  While we'd each been dealing with the news on our own for a week, this was the first that we'd had a chance to spend the day together without Matthew, family, friends, etc. and although it had been emotional considering we'd spent it at two different hospitals learning of our baby's diagnosis, I believe there was also some healing for us that took place, especially during lunch.  We actually had a chance to talk about what was happening and what we would be facing in the future and by the end of lunch, Dustin had me laughing. Although he can be impatient and often keeps his emotions tucked deep inside, he is also my rock - someone that listens (or at least pretends to), reassures me when I have doubts and is such a loyal best friend.  He is also a wonderful father.

Since then we've been in limbo waiting for the results from the DS test.  We had hoped to get it two days ago during a regularly scheduled appointment with the high risk doctor, but the results weren't ready yet.  Our doctor finally called this morning to let us know that "the results were consistent with Down Syndrome" although his delivery was much more compassionate than it sounds written down. Even though I had expected such news, I still cried when he told me.  As I should have expected, when I called Dustin at work to share with him what I'd found out, he reminded me that we had been preparing for this result, encouraged me that we'd be okay and that we were still going to love our baby.  All things that I had already known, but I have to admit they sounded very comforting coming from him at the exact moment I could feel my heart sinking.

Now that the whole sob story is over... here's where I've landed:

• We are all gifts from God.  We will love, protect, nurture and raise our children in a Christian home.
• God has been preparing us for this journey for quite some time... we have a good marriage, are blessed with wonderful friends and family, we attend an awesome church, we have an amazing babysitter, have good jobs and we have already gotten one child to 12 months.  We can do it again and we have the confidence that we can even conquer the months and years following that first one for both of our children!
• This child is going to open us up to an entire world that we never even knew existed - a world filled with compassion, joy, a great sense of community and is likely going to make us reflect on our lives to help us make sure we are pleasing Christ through our thoughts and actions.  We are going to meet new people and will likely be humbled day after day.
• As I sit here typing this, I can feel baby moving inside me - he is a miracle and will be such a blessing on so many levels.
• Matthew is loving and independent, curious and bright, funny and social and in general, he's basically perfect!  In my heart I know that he is going to be the perfect big brother.  He is persistent and patient, I could go on and on... I know that he is going to have so much love for his little brother.  

We know that our God is good.

CVAC and DS are not the end of life for our family, but rather the beginning.  I was sharing with a co-worker yesterday that all of this information has been like getting your fortune read.  While I've never been to a fortune teller, these test results are kind of the same thing... they are both a blessing and a curse.  It's wonderful to know about the heart defect so we can deliver at a hospital prepared to deal with baby's needs, but at the same time, we don't fully understand what all of this means - and it's likely that we won't understand until we've experienced it and who knows.... we may never understand.

All we know is that we have to trust in God and his plan for us.

Managing Open Heart Surgery

Surgery is scheduled for May of 2014. It's hard to believe it will be here before we know it.  I will be sure to post details as it gets closer.

Pleased to Meet You...

Believer in Christ. Mother. Wife. Daughter. Sister. Friend. Volunteer.

Passionate. Driven. Caring. Conservative. Rural American. Friend of Agriculture. Student of Life. Reflective. Thoughtful. Loving.

My name is Kristin and above are words I have chosen to describe myself.  I am the mother of two boys, an intelligent, funny and selflessly loving toddler and of another little guy, a soon-to-be-born son who has been diagnosed with Down syndrome and a congenital heart defect known as Complete Atrioventricular Canal Defect (CAVC). 

Over the years I have learned that I can best process information, reflect on life and plan for the future when I write... perhaps this is a side effect of majoring in communications while in college or maybe it's just a silly ritual I've created for myself.  Either way, it has become my version of escape during hardship, celebration following victory and simply put, a way to clear my thoughts and document my journey.

Although I've kept a private journal for many years, after searching the internet for information on Down syndrome and CAVC, I've found that some of the best resources available are as informal and unscientific as other parents who write about their experiences.  I know that God has given a purpose to my life and while I've lived believing that the service I've provided to others thus far in my short 30 years was fulfilling the purpose He had designed for me, I've recently been awakened to the fact that a new and curious chapter of my life is beginning to unfold.  I am determined to find a way to use my life and experiences as a blessing for others and as I begin to dig out of the emotional chaos that has consumed me for the last few weeks, I know that I will emerge stronger and more focused than ever.  Not discounting the necessity to learn from doctors, specialists and the science that supports them, but I'm considering this new chapter to be my effort in helping other parents who may find themselves in my shoes and are beginning to make sense of their circumstances.

In my heart I know that God has chosen me to love and nurture the little blessings that He's bestowed upon us and that he has and will continue to offer me the strength to forge ahead and advocate for my family in the months and years to come.

It's a BOY!

We learned today that baby # 2 is a boy! 

Dustin and I holding his first string of photos!

Here are some close ups of his photos from today, our 18 week anatomy ultrasound.