31 March 2013

Easter Weekend 2013

Luke and Mommy stayed home during most of the Easter festivities this weekend in an effort to help protect the little guy from germs.  We know that everyone is well meaning, but since babies are so incredibly irresistible, sometimes it's hard to keeps others at a safe distance.  At least when we're out and about and Luke is in his carrier around strangers, folks aren't really willing to dive into my personal space to see him.  When you're around people you know, it's much easier to be relaxed and let your guard down.  It was hard to stay away from our loved ones this weekend and we're looking forward to his procedure in just 2 1/2 weeks.... once it's over, we're hoping to feel like we have more freedom to enjoy ourselves and others outside of our home.

Even though I wasn't there, Daddy took photos of Matthew during the Burgett cousins Easter egg hunt last night.  While some of the little people were missing, it looks like those in attendance had a great time!

Aunt Dori helping Matthew find some eggs...
Some of the "big" kids watching the "little" kids during the egg hunt

Today was the first time I can remember ever missing Easter Sunday at church.  Again... we are still attempting to isolate Luke from other kids as much as possible.  I felt a bit out of sorts this morning as we missed the celebration of Jesus' resurrection during our church's service, but one of the members of our congregation sent home tulips they had brought in for the altar today and it made us feel really special.  Thank you to Dave and Beth Lackey for your thoughtfulness!  We are so blessed to have so many wonderful friends! We will be enjoying these flowers this week!!

Yesterday was my mom's birthday and today we celebrated!  Unfortunately, Luke and I missed yet another Easter celebration today with his dad's side of the family (and we forgot to send the camera, so I'm bummed that we don't have any photos to share).  While Dustin and Matthew were gone, my mom and I prepared an Easter dinner that we hosted with my brother and sister at our home tonight, which also doubled as my mom's  birthday dinner... hopefully she didn't mind helping to prepare her own birthday meal!  We had ham, corn casserole, deviled eggs, potato salad, a relish tray, asparagus and sauteed portabella mushrooms with vanilla ice cream and homemade German Chocolate cake for dessert.

Luke watching Mommy and Mimi cook
Even though we had him somewhat propped up,
Luke was still show us some awesome head control today!!
"A homemade cake? That's pretty awesome"!
Matthew was practicing blowing out candles for his birthday in August

So it ended up probably being a good thing that we didn't go to church this morning because Matthew wasn't feeling too good so the Easter bunny waited until after dinner to come to our house today.  Here is Matthew enjoying one of his peeps while brother Luke watches from across the room...

Finally an end to a good Easter weekend...

Do I really have to go to bed after this bath?

Hooray! He is risen, He is risen indeed!

Family Photos

We had our photos taken again last week, this time with Dustin's mom, his soon-to-be stepfather and his sister and her family.  We will be doing photos again in another month with my mom, sister and brother, so more to come in a few weeks!  These are copies of the proofs the photographer shared on her Facebook page...

30 March 2013

Hunting Easter Eggs

We made a quick stop this morning at P Graham Dunn to hunt Easter eggs.  We kept Luke bundled tightly and hidden from the rest of the world as best as we could as he rode around in his carrier and was covered with a stocking cap, his hooded sweatshirt and a blanket too.  Matthew wasn't quite sure what to think and while we saw some kids leaving with baskets overflowing with eggs, he only found three!  Fortunately three eggs was enough to make him happy and we enjoyed spending time together with our boys this morning!

28 March 2013

For the Love of Cheerios

I know I've basically dedicated this blog to baby Luke... and believe it or not, we do have another kid!  And he has his own blog (although I set it to private when I started it back in 2010 before we got pregnant with him and I need to clean it up before anyone else ever lays eyes on it!)  Anyway since I haven't posted much on here about Matthew, I thought today was a fine day to introduce you to the first baby who stole our hearts....

For the Love of Cheerios... like most kids, Matthew's been eating them since he was maybe 6 months old (honestly I can't recall when we introduced them to him, but it was sometime around then).  He calls them "eerios" and they were his food of choice this morning.  Here are some photos of him eating and playing with his breakfast.


And since I can't take pictures of one kid and not the other... here are a few of Luke this morning who was sleeping in his swing while Matthew and I ate our "eerios".

27 March 2013


It's been so rare lately for me to get in any meaningful amount of cuddle time with baby Luke.  He's just not seemed comfortable being held and at night he seems to prefer being put to bed to go to sleep instead of resting in mommy's arms.  Tonight is the first time in a few weeks that he's let me cuddle with him and its been wonderful! I love rocking him, feeling his chest rise and fall while he's breathing and watching his lips curl upwards in his sweet sleepy smiles. This is what being a mom to a baby is all about!

25 March 2013

Wall Art

It took me three whole nights, but I finally finished my first Pinterest project! These are paper mache letters from Pat Catans that I glued scrapbook paper onto with Mod Podge.

3 Months Old

Luke turned 3 months old on Friday March 22nd.  It wasn't the best day in our household as his older brother Matthew contracted some sort of stomach bug and we spent the better part of the afternoon in the ER getting him checked out for dehydration.  When Dustin got home that evening, Luke and I quarantined ourselves off from the rest of the house in an attempt to stay away from the germs and we used the time wisely... to take pictures!  For the life of me, I could not get the kid to smile, I did however manage to capture a wave...

As a note, I did talk with his cardiologist today and we have his sedated echo/heart catheter procedure scheduled for Thursday April 18th... the plan is for him to stay at least one night for observation so hopefully we will be home with him on the 19th, the day before his Daddy's 31st birthday.

Hello Everyone... I am 3 Months Old!

If I stick my tongue out will stop taking my picture and leave me alone?

21 March 2013

Heartbroken: A Diagnosis

The term heartbroken takes on a new meaning when you know someone who literally has a broken heart.  Yesterday we had another full day of appointments, beginning with our cardiologist and ending with the ear, nose and throat doctor.  During Luke's heart appointment, a tech performed another echo cardiogram as well as an EKG.  We weren't able to take pics of the echo because it's an ultrasound done in a dark room, but here are some photos of him having the EKG leads placed and then his doctor listening to his heart afterwards.

The goal of this appointment was to monitor the blood pressures in his heart and his lungs to help us determine if surgery will need to be scheduled sooner or later.  The longer we can hold out on the surgery, the better... his heart will be bigger which will potentially make it easier for the surgeon's tiny instruments to navigate (the surgeon will be wearing magnifying goggles regardless) and the bigger he is, the stronger his body will be leading up to the procedure, hopefully giving him a smoother recovery.

Initially the cardiologist thought the appointment went well, but she called this morning after downloading the data from the echo onto her big computer at main campus (we saw her at a hospital branch yesterday) and told me that while she thinks that his ventricular septal defect (VSD) is shrinking, it's structurally placed too close to his tricuspid valve for her to get a good estimation of the blood flow across the hole/defect which is necessary for her to determine the amount of pressure in his lungs.  She recommended this morning that we come back for an inpatient sedated echo cardiogram with the hopes that sedation will allow them to get a better look at his heart without him moving and making it difficult for them to get the views they need while he's awake and active.  The scary part for me is that since he's never been under anesthesia we don't know how he will respond and secondly, he will likely be placed on a ventilator for the procedure and the idea of him being intubated makes me physically ill.  Our cardiologist is also asking that we give her permission to complete a heart catheter procedure if the sedated echo doesn't give them what they need so that they can make the most of the anesthesia and keep us from having to come back another time for the cath.  Of course after I spoke with Dustin, we both agreed that we will grant her permission to do what is needed for us to get Luke's heart fixed.  The worst case scenario would be for the pressure in his lungs to be too high and go undetected for too long, which would create irreversible damage to his lungs and putting him at risk for other health complications later in life.  Both the sedated echo and heart cath would be ways to get the information needed to make the call on the appropriate timing for his surgery. 

P.S. We learned today that Luke is still growing nicely!  He weighed in at 11 pounds, 14.5 ounces (up 4.5 ounces from his weigh in last Thursday prior to receiving his Synagis injection).

A nurse placing the EKG stickers

Once the stickers are on, the test only takes 12 seconds!

Luke loved the doctors black framed glasses and he stared her down during his exam
Looking pretty comfy in Mommy's lap

Following the cardiologist appointment, we headed up to main campus for an afternoon visit with the ENT.  Upon completing Luke's exam,  he told us that he doesn't think that Luke's initial diagnosis of Laryngomalacia was correct, or he may have had it for a time, but has since outgrown it.  Now he believes that Luke has Subglottic Stenosis also known as a narrow windpipe.  His main symptom is the ever present chest retraction that is visible with every breath Luke takes - if you look closely at the last picture above, you can see where his chest is sinking in, that retraction happens every time he breathes.  The ENT doctor indicated that as long as Luke is still eating well (which he is) that he isn't overly concerned but that the next course of action will be for him to complete a bronchial scope on Luke, which he was hesitant to do considering it requires him to be sedated (and along with that comes the ventilator).

During the conversation with the cardiologist this morning, I shared with her the new information from the ENT and she indicated that it's a possibility that they could coordinate the procedures and include the bronchial scope during the sedated echo/heart cath that we will be scheduling.  I suppose it's all a matter of scheduling at this point and our doctor indicated that she would like for this to be done within the next month, so hopefully both of their calendars line up and we're able to get it all done at once.  She said that her part of the procedures would probably take 4-5 hours and if we also include the bronchial scope, it would be longer yet depending on how long it would take.

If any of my "heart mom" friends are reading this, please let me know if you've been through any of this stuff before.  What should we expect with the sedation and intubation?  Do you have any lessons learned you can share?  What's your experience been?  Everyone else, please say a prayer for us!  Luke has been eating and sleeping well and because of that, he's also been growing and thriving developmentally.  We are absolutely in love with him and we know that your prayers are aiding in him doing so well at this point.  Please keep praying, we know it's working!!

18 March 2013

A note to my readers

To my readers:

I am sorry for the influx of writings lately, hopefully I'm not annoying you with too much stuff... at the core of this blog, my goal is personal therapy and to bring you along with me on my journey of raising a child with Down syndrome.  I'm sure my activitiy will wax and wane over time and for now, I've just been so full of things that I've needed to say.  I was sharing with Dustin last night that the best part of writing is having the opportunity to choose my words.  Taking time to choose my words allows me to put my own filter and perspective on the world around me as I share our experiences - that is the therapy I derive from this process.  Thank you for sticking with me as I work through all this stuff I have floating around in my mind :)

Many you be blessed beyond measure!

My C's In The Country: "Why" ?

Sometimes it can be so easy to question why things are the way they are in life... why do people get cancer? why do we have to lose our loved ones?  Why doesn't everything go according to our well laid plans?  Why does my child have Down syndrome? why me? 

I came across this article from a fellow blogger.. a truly beautiful explanation of "why" things happen.  She shares that it's the best way for God to work in our lives, although without faith that can be hard to see...

My C's In The Country: "Why" ?: My mother in law and I left church together driving home from "Christian Missions" in Jacksboro, Texas {Awesome Church BTW} severa...

Dare To Be Different

I grew up on a dairy farm where we had registered Jersey cattle (they are brown beauties who produce a milk rich in butterfat and protein).  In the world of dairy cattle, the Holstein breed (large black and white spotted girls who produce the largest volume per cow) is the most prevalent with the Jersey breed coming in second in terms of the size of the breed.  Registered breeders can be pretty passionate about their chosen breed and at times some breeders would talk down to me because of my love for Jerseys (my interest was so great that at one point in my life I was crowned the National Jersey Queen, however that was a very long time ago!)  While I was in school, my mom gave me a small print that had a drawing of nine cows - eight of them were Holsteins and one was a Jersey.  Across the bottom read the phrase "Dare to be Different".  From the time I was a teenager, I've always displayed this somewhere that I'd see it everyday to remind me to just be me.  For close to ten years it actually hung in my bathroom so I could look at it in the mornings before leaving for school / work.  I've always worked hard to live my life by that phrase... to have my own identity and to be okay with who I am. Unfortunately, at times I think I've lived that phrase to a fault and have let my pride get the best of me too.  That said, I think "Dare to be Different" has helped to prepare me to be Luke's mom (and for that matter, Matthew's too).  I will work to be the kind of mom who teaches her children self reliance and self confidence and hopefully they will both always be proud of who they are!

This morning I heard "Iris" by the Goo Goo Dolls on the radio as I drove through the sleet and rain to get to work and  it made me reflect on the love between parents and their children.  The first verse seemed to describe how I feel when I watch Luke sleeping and he's somewhere other than in my arms... the longing to touch and hold him can be overpowering sometimes.  It also makes me reflect on how I think I might feel if God forbid, he doesn't make it through his open heart surgery... one of my single biggest fears at this point in my life (and something that I work hard to not think about).  "And I'd give up forever to touch you / 'cause I know that you feel me somehow / You're the closest to heaven that I'll ever be / and I don't want to go home right now / And all I can taste is this moment / and all I can breathe is your life / and sooner or later it's over / I just don't want to miss you tonight".

The chorus made me think about Luke when he's older and the type of vulnerability he might feel... something that I hope is combined with a sense of self worth... the chorus goes like this... "And I don't want the world to see me / 'cause I don't think that they'd understand / When everything's made to be broken / I just want you to know who I am".  I hope that society continues to embrace diversity and that Luke feels included in life as he grows older.  I also hope that he has the communication skills to share who he is with others. 
Deep thoughts for a Monday and at that one that started at 4:40 am with an unusually fussy baby!  (Luke has pretty faithfully slept through the night since he was 7 weeks old, so I won't hold this morning against him :)  Here's to having a blessed week!

"Iris" - Goo Goo Dolls
And I'd give up forever to touch you
'cause I know that you feel me somehow
You're the closest to heaven that I'll ever be
and I don't want to go home right now

And all I can taste is this moment
and all I can breathe is your life
and sooner or later it's over
I just don't want to miss you tonight

And I don't want the world to see me
'cause I don't think that they'd understand
When everything's made to be broken
I just want you to know who I am

And you can't fight the tears that ain't coming
or the moment of truth in your life
When everything feels like the movies
Yeah you'd bleed just to know your alive


Instrumental part

Chorus 2x

I just want you to know who I am 3x


Last weekend we were at Chik-fil-a enjoying lunch when a lady stopped to ask us how old our baby was and after we shared his age, she followed up with "he's so cute".  Then another lady at a nearby table heard me humming Jesus Loves Me to Luke as I tried to get him to sleep and she commented on how cute he was too.  Finally as we were leaving a family came in with a 3 year old boy, a 2 year old girl and a set of twins and we made small talk with them about having young kids, again the mother commented on our “cute baby”.  During all of the interactions, I couldn’t help but wonder if they wondered about Luke?  Could they see that he was different?

This coming Thursday, March 21st aka 3/21 is World Down Syndrome Day.  It's in honor of individuals with Down syndrome having 3 copies of the 21st chromosome.  Those individuals will be speaking out about who they are…. Friday will be Luke's 3 month birthday and yes, he’s still a bit too small to tell you who he is and although I'm not the best poet, I thought I’d take the liberty...

I am Luke and I’m not so different than most of you
I am Luke and I wish you knew...

I fill my mommy’s heart with lots of joy
I am my daddy’s sweet little boy

I have a big brother who thinks he knows it all
I will teach him so much about life when I’m no longer so small

I am Luke and I was sent from above
I am Luke and I’m full of lots of LOVE!

17 March 2013

Attending Our First Kid's Fair

Today we went to a kid's fair of sorts hosted in our community.  Matthew played at various stations they had set up with blocks, a train table, bugs, crayons and those sorts of things and at the end we listened to a live performance of kids' songs and stories.  Matthew was really good throughout the whole thing and Luke slept peacefully in our baby carrier. 

Are we there yet?

Sweet, Smiling baby Luke

Luke has been smiling for a few weeks now, but I've failed at getting it on camera.  I was finally successful this morning with capturing his sweet and perfect little smile!  This is a series of photos that builds up to the best part, his gummy grin!

Luke is getting so long too! He's grown over four inches since birth and he measures just over 22 inches now!  He is filling out his 3 month clothes really great now.. it won't be long before we're moving to the next size!