29 January 2013

Sleeping 4 hour stretches!

During the last two nights Luke has slept for 4 hours at a time, up from his personal best of 3 hours! He's not real consistent in doing 4 hours every time, but it's something! Hope he keeps it up!

26 January 2013

Moving on up

Well little man, today you are 34 days old and tonight I'm letting go for the first time as you achieve one of your first growth milestones, you're graduating from newborn to size 1 diapers! Although you were 8 pounds, 10 ounces when you were weighed last Wednesday at your one month checkup and newborn diapers are suggested to fit up to 8 pounds, we had a few extra packs and decided to use them all before starting the next size up.  Size 1 diapers are supposed to fit up to 14 pounds, so we have a bit before you're moving on to size 2s, but I'm sure the time will fly as you continue to sleep, stretch and grow!

24 January 2013

A Sneak Peek

Today we had new family photos taken!  Below are the proofs the photographer shared on Facebook this afternoon!  I can't wait to see the rest of the photos... I'm planning to use a combination of what she captured today as the artwork on the large wall above the sofa in our new home.  I can't wait to get large prints (or maybe canvases) ordered so I can get them hung up!

23 January 2013

Celebrating our new "normal"

A week ago tomorrow, I climbed out of my safe and and at times, vulnerable little world and shared the news of Luke's diagnosis with the broadest audience I'm capable of reaching on my own... Facebook. I'm not 100% sure why I was so nervous about sharing our story there. I am not embarrassed or sad nor does it bother me to verbally talk about it with others. It's not a secret and I'm actually excited about the prospect of impacting inclusion efforts for individuals with disabilities and/or delays. Most of all I love our son (both of them actually) and the reality is that it is what it is. We will make the most of things and we will have a good life.

Now that I have had a week's worth of retrospect to think about my experience with Facebook, I am overwhelmed! We had so many nice comments, "likes", and private messages!  I think part of why I was scared to post the information on Facebook is because I was a little afraid of the potential for discrimination or harsh comments and I'm just not ready to deal with that sort of stuff yet. I really just want to spend every moment right now enjoying Luke as a newborn, and celebrating the joy that he has brought into our lives.  In the last few months I've only had one person make an unkind comment to me about our new "normal" and it felt really awful. Fortunately, the reception we received with our "announcement" last week was only positive, uplifting and encouraging! Thank you to everyone who made an effort to show us some support... It made our new "normal" feel more normal than I expected and it was pretty awesome to celebrate Luke's arrival with so many people!!

Do They Look Alike To You?

I cannot get over how much Matthew and Luke look alike!  Aside from Matthew having a wider forehead than Luke, I really think their eyes, noses, cheeks and mouths have a strong resemblance at this stage!  Surely as Luke grows older, he will develop his "own" characteristics and identity, but for now I see quite a few similarities!

22 January 2013

Baby Luke is 1 Month Old Today!

Today we took Luke in for his 1 month checkup!  I am still wondering how he can be a month old already... time sure does fly.  During his exam, we learned that he continues to gain weight!  He tipped the scales this morning at 8 pounds, 10 ounces (v. 6 pounds, 8 ounces at birth), and 20.5 inches long (v. 18 3/4 inches at birth), with a head circumference of 13.39 inches (v. 12 inches at birth).  While they can compare him with typically developing boys on a growth chart, they instead plot him on a chart that compares him to other boys his age with Down Syndrome to get a more fair representation of how he's doing.  The nurse shared where he's at on both charts... pretty interesting to see the variation!

For weight, he was 8 pounds, 10 ounces which put him at 50% for 1 month old boys with DS or at 20.39% for typically developing boys at 1 month of age.  For length, he measured 20.5 inches long, which placed him at the 37.5% length or at 36.48% on the normal chart.  His head circumference of 13.39 inches placed him at 37.21%  on the DS chart or at 1.78% on the normal chart.  

We were thrilled that he continues to gain so much weight!  It is such a relief to know that our feedings are going well and that he's getting the nutrition he needs to thrive and gain size and strength for his future surgery (whenever that will be).  We talked through lots of questions with our pediatrician and were pleased with the time and attention he offered us, which has grown to become typical of our visits since we began seeing him with Matthew a year and a half ago.  We are so fortunate to have a great doctor!  

One of our concerns was with some head congestion that seems to be afflicting Luke.  Although it's not the typical congestion you'd think of... it sounds kind of nasally, but there isn't any drainage or anything like that and he isn't sick.  There could be a concern with a heart issue with the congested sound, but his cardiologist ruled that out during our visit with her last week.  The best we could figure out is that Luke may have small nasal/sinus structures which could restrict the amount of air he can take in with a given breath.  Our pediatrician referred us to a pediatric endocrinologist at Cleveland Clinic Main Campus to follow up to make sure he doesn't have any undetected respiratory issues. 

All in all the appointment went well and Luke seems to be on the right track!

17 January 2013

A Public Announcement

I've been struggling for months.  Seems pretty silly I guess, but what do I do about Facebook?

Do we share Luke's diagnosis?  When and how?  Since our family and close friends already know, should we even share on Facebook?  Yesterday I was thinking about advocacy for individuals with disabilities and I decided finally that Yes! we should share and since there is no time like the present, I might as well do it sooner rather than later.  So, that my friends is what I'm preparing myself for today.

Baby Luke has a heart defect known as Complete Atrioventricular Canal and he also has Down Syndrome.  This blog was created for me to journal about our experience, but also to educate others about what we're going through and the miracles that our baby boy is going to achieve as he grows older.  He will touch people, I have no doubt - he has already touched my heart in a way I cannot describe!

Please celebrate with us, browse around our blog and get to know our son - even at just 3 weeks old, he is already a pretty awesome little guy!

The Cleveland Clinic - Our Experience

Where do I start?  The beginning seems so long ago but is nevertheless where our experience was born.  Although we haven't completed our journey yet, we have had such an amazing experience with our doctors at the Cleveland Clinic and since I've been thinking about it a lot lately, I want to call out some of our highlights.

Experience #1
At 21 weeks gestation, when we learned the news from our Perinatologist that our baby appeared to have a heart defect and Trisomy 21 - he was so very kind in how he shared the news with us.  Furthermore, that evening, my regular OB doctor called me at home from her personal cell phone "just to check in".  She and I talked for about 40 minutes and she counseled me on what would happen next in the pregnancy as far as what our "plan" would look like with appointments, delivery destination, etc.  Although I wasn't considering terminating the pregnancy, we also talked about how the last possible abortion could happen at maybe 22 or 23 weeks (I can't recall the specifics now) and she answered my questions about what the process would be like and shared that it would be an induced labor and that I'd deliver the baby and possibly need some surgical intervention. I'd never really thought an abortion would ever be a choice for me... I've never felt comfortable with holding the power of ending a life (even that one time that I went deer hunting.... I closed my eyes before I let the arrow fly, partially hoping that it would miss...and I was relieved when it did!)  Learning more about "the process" of having an abortion helped me solidify the decision against termination.  I felt so grateful that my doctor took it upon herself (during her personal time) to call and talk with me.  I was relieved and calmed by our conversation.

Experience #2
So my regular OB doctor's husband is an OB anesthesia fellow at Cleveland Clinic and we coincidentally met him during an appointment with our Perinatologist in Cleveland as he happened to be shadowing with him that day.  It felt so good to have a connection to "home" while we were in Cleveland.  He knew about our situation from talking with his wife and it made me feel at ease for him to be in on our appointment.

Experience #3
All of the appointments leading up to the delivery were well coordinated and we experienced a great level of knowledge and compassion from our doctors and their staff.

Experience #4
3:30 AM the morning of December 22nd, 2012... three weeks before my actual due date.  I woke up with contractions and after realizing I had some bleeding, called the Special Delivery Unit (SDU) at The Cleveland Clinic (which was my planned delivery destination for my scheduled c-section on January 2nd).  The doctor on call was great in helping me to diagnose my symptoms and suggesting that we come in (with the Clinic over an hour away and it being the middle of the night - and considering we'd have to call in some family to come take care of Matthew - we didn't want to make the trip without due cause)  When we got to the Clinic, the nurses were waiting for us... we saw various nurses, OB related doctors and anesthesiologists as well as NICU doctors and cardiologists who were preparing for Luke's arrival.

Experience #5
7:45 AM the morning of December 22nd, 2012 - we were preparing for a 9 AM c-section with the doctor on call, when we learned that our Perinatologist who had been following me since 21 weeks was requesting that we hold off on the c-section until 11 AM.  He was just beginning to start another unplanned c-section at a different Cleveland area hospital and he wanted to be there to complete my delivery.  I was elated that he wanted to be there for us.  He was the person that I'd grown to trust over the last few months and felt so blessed that he was asking us to wait for him!

Experience #6
Following recovery, the SDU nurses snuck me into Luke's room in the NICU so I could hold our baby for the first time :)

Experience #7
The morning of Christmas Eve, when we arrived at the NICU for Luke's morning feeding, we found 4 cardiologists completing his echo cardiogram.  We were in one of the nation's leading heart hospitals and were allocated 4 of their cardiologists to complete a newborn echo?  Such an amazing example of teamwork and collaboration!

Experience #8
The NICU director made a special exception on Christmas Day to allow Luke's big brother, Matthew to visit the NICU so our boys could meet for the first time.  Usually it's against the rules for young children to visit.  Matthew was healthy and they sectioned us off in a private room so he wouldn't be around the other babies.  He was only there for 30 or 40 minutes, but it made our Christmas one of the most memorable we will likely ever have.

Experience #9
Being admitted to the hospital over Christmas wasn't real fun, but all of the staff were so kind!  The spirit of Christmas was all around us and even the janitors mopping the floors were wishing us a Merry Christmas!  One of the hospital's police/security guards gave Dustin his complementary employee Christmas meal tickets for the cafeteria.  The employees of The Clinic were awesome.  They are real people and they made us feel well cared for.

Experience #10
After being home a week, we noticed Luke had some labored breathing.  It was 8 PM and since our local community hospital doesn't have a pediatric wing in their ER, we called The Clinic's NICU and spoke with the Director over the phone.  We hung up to start a session of Face Time where he gave Luke a visual inspection and suggested we bring him up to the PICU for an exam.  He was fine when we got there, but we were glad we took him in - they admitted him overnight for observation.  The director told us he was glad we brought him in and that he wouldn't have been able to sleep if he had thought Luke may have been in distress.  He even went so far as telling us that if he hadn't been on call, he would have driven to our house to inspect Luke there as it would have been more convenient for us with another young son at home.

Experience #11
A few days following our experience in the PICU, I took Luke for physical therapy in Wooster at Health Point.  Luke's pediatrician, also a Cleveland Clinic doctor here in Wooster just happened to be there working out over lunch.  He was out of the office the day we took Luke in for his 1 week exam so we hadn't seen him yet.  He saw us in the lobby waiting for PT and he stopped his workout to come out and talk with us and inquire about Luke.  We didn't talk for long, but the personal attention he offered us was really rewarding.

We feel so fortunate to have had such awesome caregivers and so far we are huge proponents of the Cleveland Clinic!  I'm not really looking forward to surgery, but we trust we will be in good hands based upon our experiences thus far!

16 January 2013

Cardiology Follow Up at 3 Weeks Old

Today we had Luke's first follow up with his cardiologist since leaving the NICU.  Basically we didn't learn any new definitive news.  We are going back for another follow up in 3 weeks.  What we did learn at today's appointment is that the pressure in his lungs has dropped some, but not enough to make a call on when his open heart surgery will be scheduled.  At our next appointment, if the pressure remains the same that it is now, we will be looking at surgery being scheduled when he's around 3 months old (which would be at the end of March).  If the pressure continues to decrease, we will continue with regular cardiology follow ups with the potential for us to extend his surgery until he is 12, 18 or even 24 months old. 

Apparently if he does need the surgery sooner rather than later but we choose to wait, he can have irreversible damage to his lungs.  Our cardiologist mentioned something about implications to his liver too, but now that I'm recalling the conversation, I don't remember the exact details. I will have to remember to ask her about that next time.

I know that Luke needs open heart surgery.  Now that he's here and I've had a chance to really fall in love with him, the prospect of him actually having the surgery is terrifying.  I know that the success rate is very high and he will likely have a smooth and quick recovery but I'm still scared. 

I will continue to pray for strength for our family and I have faith that our prayers will be answered as His plan continues to unfold in our lives.

15 January 2013

Dream a little dream...

After being up to feed baby Luke at 11 PM, 2 AM, 3 AM and 6 AM this morning... I was pretty tired by the time the sun was about to rise.  As I sat in my rocking chair wishing I was in bed under the covers... Luke brought me back to reality with the most wonderful series of smiles!  I know they happen when babies are in REM sleep and not because they are attempting to warm their mothers hearts, but it was awesome nonetheless!  Instead of dreaming of my own sleep, I changed my frame of mind and soaked up Luke's dreams instead!  He really does have the most beautiful smile...

13 January 2013

Luke's first therapy appointments

Last week Luke had his first therapy appointments. Basically what we learned during our physical and occupational therapy sessions just amounted to various exercises. Our therapists suggested that we complete the following activities a few times per day:

- Rubbing / tickling baby's feet and hands a few times per day with our own hands and also with items of various textures including soft brushes, soft fabrics, rough toys, etc. This is supposed to remind him that he does have hands and feet at the end of his extremities and to help him build awareness.
- Touching one hand to the opposite foot 10 times and then switching to the other hand and foot and repeating 10 times. This exercise is supposed to help him build muscle strength, but also to help him begin understanding how to use these muscles together eventually when the time comes for him to begin crawling.
- Stretching Luke's arms high above his head with his upper arms resting next to his ears and his elbow flat and then doing the same with his legs, stretching them flat beneath him with the goal of getting his knees to be in line with his hips. We do this stretching to help him have a better range of motion.
- Picking up his feet so they are high in the air (when Luke is laying on his back) with the goal of teaching him to do it himself so he can continue to build trunk muscles.

We will be completing both PT and OT again next month.

10 January 2013

Christmas Day 2012 - Matthew & Luke Meeting Video

I've finally had some time to download some videos off of our camera and was delighted to find this one from Christmas Day 2012 when Matthew (16 months old) came to visit us in the NICU and meet his baby brother for the first time!

04 January 2013

First night in the PICU

We spent last night in the PICU with baby Luke... He is 12 days old.

He had really bad diarrhea last night, projectile vomited all over himself and Mommy and in addition had very labored breathing. I was concerned about the breathing being a symptom of congestive heart failure so we called the NICU to discuss with the neonatologist. After listening to Luke's symptoms, he suggested that we talk over FaceTime so he could complete a visual inspection of Luke's breathing. After watching his chest retract with each breath over the screen, he suggested that we come up to the Clinic to get him checked out. At that point it was about 8:30 at night, so we called a neighbor to come watch Matthew until my mom arrived and after some quick packing, we were on the road by about ten till nine. We were in a room in the PICU by 10 pm and the staff here were ready for our arrival, with numerous doctors and nurses waiting to check him out. After a chest X-ray, a swab test to check for a respiratory infection and a thorough exam by the neonatologist, It was determined that Luke was okay. His breathing had steadied and slowed down considerably by the time we had arrived and the other tests had come back normal. We were really thankful that he was okay and we agreed that the Clinic is very blessed to have such a wonderful Director (he is also the neonatologist who saw us last evening)! The biggest downside to us being "better safe than sorry" last night was that we had to sleep on a pull out love seat that had springs sticking through the 2 inch thick mattress and by 3 pm the following day, we are still waiting to be discharged! I guess those things just come with the territory, so we will focus our thoughts on how lucky we were that Luke was fine and we will be heading home soon!

01 January 2013

Happy New Year!

Dustin and I spent New Year's Eve snuggled up in our living room watching movies and holding and playing with our boys.  Luke is not doing much other than feeding and sleeping, but that makes him a prime candidate for cuddling while watching TV.  Matthew is in love right now with a box full of plastic balls and a pop up tent he received for Christmas from Aunt Dori and Uncle Nate and also with Mom and Dad's iPad.  He spent most of the evening playing with those three items.  On the iPad, he enjoys playing a farm animal peek-a-boo game that we've downloaded and he and Dustin generally had fun playing it and goofing around on the floor with other toys. 

Matthew was in bed by 8:30 and Luke by 10 PM.  Matthew slept through the night (as usual) and Luke was up again to eat at 1 AM and again at 2:30 and 5:45. 

Today, we have pretty much relaxed around the house.  We activated a free trial for Netflix and watched a few movies this afternoon. For lunch, Dustin made cookies, a ham and cheesy potatoes and for dinner, I made mashed potatoes, pork and sauerkraut.  It's almost time for Matthew's bath... but for now, he and Dustin and sitting on the couch eating grapes while I hold baby Luke and stare at his sweet face!

As I look forward to 2013, I pray for good health for our family.  I will ask God everyday to watch over our boys and Dustin and I and to help us share the love that we receive from others.  In addition, I ask for Him to grant me a deeper understanding of technology and medicine and for the faith to cast my cares on His shoulders.