Remember Today

The Air Force Hymn

Lord, guard and guide the men who fly
Through the great spaces of the sky;
Be with them traversing the air
In darkening storms or sunshine fair

Thou who dost keep with tender might
The balanced birds in all their flight
Thou of the tempered winds be near
That, having thee, they know no fear

Control their minds with instinct fit
What time, adventuring, they quit
The firm security of land;
Grant steadfast eye and skilful hand

Aloft in solitudes of space,
Uphold them with Thy saving grace.
O God, protect the men who fly
Thru lonely ways beneath the sky.

Amen.

Happy Memorial Day

Hope everyone is having a happy, relaxing weekend. Friday night we spent the evening on a sunset cruise out on Cross Lake with our neighbors. It was so relaxing, in fact, that Luke slept the entire time! It's still a little too early to have Luke out in the heat because otherwise, we'd spend the entire weekend out there because the weather is PERFECT! Yesterday we went to a couple of BBQs to celebrate the holiday weekend. But, nothing beats the excitement of today.....Grandpa & Grandma Malone and Crazy Uncle Mike get here!!!!! My mom has already met Luke; however, my dad and brother have only seen him via the blog and web cam. So, for you picture lovers out there, get excited for TONS of pictures from the upcoming week. Time to go clean the house and go grocery shopping...

Initial Meeting

Success! Today, Dee, our case manager for Early Steps, the state sponsored early intervention program, came over to get Luke officially enrolled in the program. There was only a small mountain of paperwork, and she thinks Luke can get scheduled for his initial assessment as early as next week or the week after! Then, based on the results, we'll develop a plan for Luke's therapies to help him reach his developmental milestones. In addition, we also talked to an outpatient physical therapy office so that Luke can continue to work with Karen, his physical therapist from NICU who is AWESOME!!!!!! Some people are soccer moms...I'm a therapy mom! Good thing I like to spend time in my car because we're in for a lot of driving around :)

Logistics

Whew...it has been a busy few days of working out the logistics of the next phase of our lives. We got the official word yesterday that Luke has received a slot at the Goldman School in Shreveport. Basically, the purpose of the school is to combine kids that are developing typically and have special needs. Kids have every disability there from Autism to DS to severe physical handicaps. Patrick and I think it is a sensational opportunity because our ultimate goal is for Luke to participate in as many regular classes as possible as he gets older and progresses academically.

In other news, keep your fingers crossed that we have a successful day tomorrow. Our case manager from Early Steps, the state early intervention program, will be visiting our house for Luke's first assessment! She'll evaluate where he is developmentally, and she'll make recommendations for what therapies to start and when we can proceed. It will be nice to get a schedule set up because I'll be heading back to work June 28th, Patrick starts Weapons School (an intense 6 month training program), and we need to make a game plan. Luckily, my boss e-mailed me yesterday to verify that I have free reign on my schedule. I see having Friday afternoons off to be in my near future :)

Hopefully we'll have exciting news after our evaluation tomorrow!

Questions

Sometimes April and May feel like the longest months of our lives, while at other times we wonder where the time went. Two months ago we wondered what Luke would look like, how he would behave, and if we could handle the growing pains of being new parents. Family and friends constantly called, e-mailed, and stopped by to share in our nervous anticipation. Then, on the morning of his birth, a whole new dimension was added to our lives, a part we never saw coming.

When the doctors first gave us the news of Luke's diagnosis the joy of being first-time parents was temporarily shattered. The innocent anticipation of being first-time parents was instantly replaced with looming questions. How long would he have to stay in intensive care? Would he live a normal life? How were we going to tell our family and friends? More importantly, what would you all say?

Now, after countless phone calls and e-mails, meals, visitors from family and friends, we couldn't possibly be more grateful. Instead of looking at Luke's diagnosis as a misfortune, each and every one of you rejoiced in his arrival, prayed for a speedy recovery, celebrated his homecoming, and now each day you continue to follow his story here on the blog. In less than 5 weeks, over 3000 times you've all logged in to see Luke's progress and to offer your support and words of encouragement. For this, you will never know how much it means to us.
Last night when I was holding Luke in my arms during his 4 a.m. feeding, I realized several things. Luke looks just like his dad, widow's peak and all. He is a boy who likes his routine - feedings, play time, two poops in a row, and being snuggled back to sleep. Patrick and I can decipher his cries, handle getting pooped on, and make smooth trade-offs on responsibilities around the house. In five weeks, we have the answers to our simple questions from before his birth.

As is the case for any baby, the future remains uncertain. We may not know exactly when Luke will hit different developmental milestones, how he'll do in school, or what type of adulthood he may experience, but then again, no new parent knows the exact answers to those questions. Just as you all celebrated Luke's arrival with unconditional acceptance, your support allowed Patrick and I the chance to piece together our emotions and realize that not having the answers to these bigger questions is perfectly okay.

Man farts and full bottles

If you were just innocently sitting in our living room, you might swear that Patrick ate something that didn't agree with him. More than likely we'd all moan and groan and tell him to go outside. However, when the little dude farts like a man, it's hilarious. The doctor recommended that we go ahead and up the amount of each of Luke's bottles, but the side effect is a plethora of gas. Between Patrick, Luke, and Ralphie's noisy backsides, Sophie and I thought we might need some gas masks. Instead, we sent Ralphie to play next door with his best friend, Whody while the rest of us went for a walk. From the pictures, it looks like Ralphie's playdate was more eventful than the walk. (Yeah, his paws should be white.) Before long, Luke will be joining in the mud wrestling with the puppies.

Doctor Visit

So far, the highlight of today has been Luke's doctor visit, and it was a huge success! The little dude managed to gain some weight and grow in length! he's now up to 21 3/4 inches and 8.9 lbs. If only his short legs would grow so he could finally wear newborn shorts. Right now, they come down to his ankles! The doctor thinks everything looks good and thinks Luke's growth and development is right on track. We're actually all cleared from doctor appointments for the next 3 weeks! After that, we'll see if the pediatrician will want to monitor him more closely for developmental milestones. In addition, physical therapy should start the beginning of July to help ensure that his gross/fine motor skills develop properly. For now, we'll enjoy our break from waiting rooms :)

A relaxing day

Today was just another happy day hanging out together. This morning, Luke went to his friend Rece's 3rd birthday party. Then, we met up with our friends Laura and Jason at McAllister's for lunch. We got home just in time for our next bottle and naptime. Finally, daddy got home late from work, but we managed to squeeze in a walk (and Luke FINALLY decided he likes his stroller!), bath, and bedtime bottle together.

Luke 4, Parents 0

Hello dear readers! It's Patrick again, bringing all of the newest news about our family! I know I secretly have a fan club in our reader base, right?


Anyway, yesterday was.....let's just say it was a boon for the cleaning industry. I got a call from Melissa that said that Luke had decided that the wall behind his changing table, the changing table itself, and his Mother were all dirty. So he hosed them all down. For those of you keeping score at home, and I know that you are, that would be a #1 for one point. 1-0.


When I came home I figured that I would be a good father and hold the little baby dude while he ate so Melissa could pump/do some things around the house she had been trying to do. Well, Luke decided that I was too clean...so he leaked poopies (did I just use the word poopies?) out his diaper, over his blanket, and onto my last clean uniform! Sigh. That would be a #2 for two points. 3-0.
As I changed, Melissa was changing him out of his clothes so we could give "The Hose" a bath, and he figured that the lamp on the changing table was getting too hot.....so he hosed it down, and his Mother. What's funnier than that is Melissa's initial reaction was to try and "catch" the stream. She didn't do very well in Physics. Again, for those of you keeping score at home, that's a #1 for one point. 4-0.
We did get him washed, which he hates, so maybe we got a cheap shot in there at the end, but all for not. We had to wash all of his clothes and all of my uniforms. Such is the life of a new parent! You know, everyone warned us about the projectile peeing, but no one said a word about the projectile poopies! Mrs. Kilgore's class, please take note!!!!

1 month!

It's hard to believe that Luke is already a month old today! Even though we had to rest quietly in the hospital for the first three weeks, we've been plenty adventurous the past few days to make up for lost time. Friday night the Andersons (our next door neighbors) hosted a crawfish boil so everyone on the block could meet each other. We picked the best neighborhood in the city because EVERYONE is super friendly and likes to get together. The food was delicious, but Luke wasn't a fan of the crawfish.
On Saturday Luke realized that there were still tons of Shreveport friends to meet, so he invited about 30 people over for a little BBQ. Although the weather didn't want to cooperate, it was a blast to get everyone together. Poor little dude just couldn't keep his eyes open by the end of the night.

Green Goo

Just yesterday one of my good friends jokingly posted on Facebook that she wanted to quit her job as a stay-at-home mom and go to work because it was easier. It was ironic that she posted when she did because I, too, was having one of those days.

Needless to say, the transition from working full-time (I'm going back in July after maternity leave) to cuddling at home with a newborn has been quite the shock. When Luke was having one of his "gassy spells" yesterday and crying non-stop, the thought of being at work seemed pretty nice! Not to mention, Luke's crying is not the prettiest right now due to some clogged tear ducts. The doctor says it is pretty common in babies, and, call me crazy, but I'm not a big fan of the green eye goo.

Then, when he finally calmed down and we washed off his poor little eyes, he looked so peaceful randomly smiling in his sleep (maybe it was just gas). Although I miss going to work everyday, I wouldn't trade this time at home for the world. Today, we even ventured out on our first trip without Patrick or his mom around to help and neither of us melted down!! It might take me a bit, but I'll eventually get the full hang of this mommy gig. For now, please excuse me while I go wipe off some more green eye goo.

Research

Today was a pretty typical day around the house. Luckily, Patrick is still on leave for the rest of the week, so we are maximizing the opportunity to accomplish as much as we can and still get in some much needed rest and relaxation. We spent the day cleaning, doing yard work, running errands, and working out in between taking care of Luke. When the chores were done and Luke was peacefully sleeping in his swing, I finally had time to sit down and start doing a little more research about Down Syndrome.

After Luke's diagnosis shortly after birth, our immediate reaction was to start requesting material and searching for books; however, the doctors, thankfully, encouraged us to simmer down and just enjoy our new baby. Although both of us had a basic understanding of DS, it is amazing how much information is out there. Several people have commented that they've been doing a bit of research as well in order to better understand what Luke may be facing throughout his life, and we think that is AWESOME! The fact that you are all taking the time to learn about Luke's needs shows what a strong support system he truly has. So, we've decided that occasionally as we learn of great sites/resources, we'll pass them along to all of you in case you want to check them out.

The first site we've chosen is the National Down Syndrome Society (www.ndss.org). It provides a basic overview of DS, educational opportunities, and links to other support organizations around the country. Most importantly, there is a link for "My Great Story" which includes hundreds of stories about the daily joys and struggles of living with DS. So far, this site has answered a lot of the basic questions that have been swimming through our minds the last month, but feel free to let us know any questions that you have because, chances are, we've been asking the same ones!

That's Us!

Have you ever been reading an article and thought, "That's me!"? Most people have had this happen at least occasionally, and for me, it seems to happen quite often. Whether it be reading about pregnancy or having a baby with special needs (my topics of choice lately), I often find myself relating to the stories, but today was the most surreal experience ever.

Shortly after Luke was born Patrick went up to base to the Family Readiness Center, an organization on military bases that provides support for whatever situation a family may be facing during a military career, and picked up information for families with a special needs member. There was a brochure published in 2009 that is distributed across the Air Force to families just learning about the services provided to families with special needs. One particular article about deployments caught my eye because there on the page was a picture of me and Patrick...LITERALLY. The picture is of me running into Patrick's arms after he returned home from his deployment in January 2007 that had been published in the Minot Air Force Base newspaper.
Some people might call it a random coincidence, but I call it fate. What are the odds that a picture taken 3 years ago from across the country end up in an Air Force wide brochure created two years after the fact? What the odds that this picture appear in a brochure for families with a special needs members? What are the odds that this particular picture depicting one of the happiest moments of our lives end up in material that we are reading to help create a better life for Luke?Call it what you want.



And here is the original taken as Patrick stepped off the jet in 2007. Brrrrr it was cold!

My Mom Leaves Us Again

Hello dear friends. It's Patrick jotting down a few notes. The last few days have been pretty eventful! My mom, how has been with us since Thursday, left today to go back home and tend to her store. This was her second time with us. She was here when Luke was born and is back to help us get adjusted to a kid in our house. I think she believed that Luke is in good hands...even if we argue about when to feed him and give him his Mylicon. If that's what we are worried about, then so be it! Anyway, here is a picture of my mom loving on Luke.

Luke got his first bath at home this weekend. Needless to say that he hated it. Big time. That's ok, because he was a dirty little boy. Here is me trying to figure out what is going on...

She was lots of help especially for two recovering parents. She loved to hold Luke no matter what his temperament happened to be. She did take my bluetooth charger when she left thinking it was her cellphone charger (T-Mobile doesn't have service in the north side of town!) but it's all good.

So the doggies have taking a liking to all things Luke, even if it's to chew them up. This includes plush toys and pacifiers. But they did get to witness Luke rolling over! Which apparently no one actually believed the the first video I posted, so I had to post the second video. Haters.


Anyway, he is taking anywhere between 2-3 oz bottles. He is feeding a little erratically but that might be because of a growth spurt. We are headed to his one week checkup Weds to make sure everything is in place. Should be uneventful! Hopefully.

Anyway, here is one last shot of the Little Dude being cute. Goodnight friends!

Luke Rollin' Solo Ya'll!

For those of you (including my wife) who judged my claims that Luke needs an "assist" to roll over, take a look at this!

Delayed Development?

Here is Luke, three weeks old, rolling over for the third time. Luckily I was able to record it with my phone and figured out how to post to You Tube. Our iPhones are crazy useful!

A Mommy's First

For those of you who know Patrick and I (most of you reading this blog!), we are pretty sociable people. Very few things are better than being surrounded by family and friends to celebrate whatever occasion we can possibly think of. Yesterday was different. I simply wanted a quiet day together as a family to celebrate my first Mother's Day, and I got just that.

The day consisted of church (with a good little Catholic baby who slept the entire time), brunch, a nap, and a relaxing evening of watching television together as a family. When I went to bed I couldn't help but think what a difference a year can make. A year ago I spent Mother's Day crying after having my second miscarriage just weeks before, wondering when I was finally going to get my baby that I wanted so badly. Now, I marvel at the fact that I am a mom. It's been a crazy first few weeks, but any first-time mom knows that feeling quite well.

I decided to include this poem that a good friend gave me to help me through the last year. I still read it often to remind myself of what an amazing gift being a parent actually is. So, for those of you who are moms or want to be a mom, happy Mother's Day.

A WONDERFUL MOTHER

There are women who become mothers without effort,

without thought,

without patience or loss,

and though they are good mothers and love their children,

I know that I will be better.

I will be better not because of genetics or money or because I have read more books,

but because I have struggled and toiled for this child.

I have longed and waited.

I have cried and prayed.

I have endured and planned over and over again.

Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.

I will notice everything about my child.

I will take time to watch my child sleep, explore, and discover.

I will Marvel at this miracle every day for the rest of my life.

I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold, and feed him

and that I am not waking to take another temperature, pop another pill, take another shot, or cry tears of a broken dream.

My dream will be crying for me.

I count myself Lucky in the sense; that God has given me that insight, this special vision with which I will look upon my child.

Whether I parent a child I actually give birth to or a child that God leads me to, I will not be careless with my love.

I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend, sister, because I know pain.

I know disillusionment, as I have been betrayed by my own body. I have been tried by fire and hell that many never face, yet given time, I stood tall.

I prevailed.

I have succeeded.

I have won.

So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.

I listen, and even though I cannot make it better, I can make it less lonely.

I have learned the immense power of another hand holding tight of mine, of other eyes that moisten as they learn to accept the harsh truth when life is beyond hard.

I have learned a compassion that only comes by walking in those shoes. I have learned to appreciate life.

Yes, I will be a wonderful mother.

author.... unknown.

Daddy's Magic Touch

Good morning! Last night was pretty eventful in the fact that it wasn't eventful!

After dinner and watching The Blind Side, Melissa and I split up our duties. She went to bed while I went to spend the first shift with Luke in his room. The recliner rocker we have is great for sleeping! I changed him and gave him his bottle and pressed the timer buttons on our Itzbeen (a cool thing that tells you how long it's been since you fed, changed, and a few other functions). He went right to sleep so I put the little dude down in his crib and he passed out. So I followed suit, thinking he would wake me up when he needed something. I was three feet away and had my IPhone playing songs real low.

Later that night I woke up and heard him breathing nicely. Not knowing what time it was (or more importantly, how long it had been since his last feeding) I grabbed the Itzbeen and looked. Then I looked again....It had been 4hrs and 45mins since his last feeding! The nurses had told us to feed him every 3-3.5 hours when he starts crying, but he never did fuss! While he really isn't a newborn anymore, we thought he wasn't quite ready to sleep all night. So I woke up Melissa for her shift and told her that he was still asleep. She woke up him up and fed and changed the little chucker and he didn't wake up until this morning!

However, this morning my mom was reading the paper in the living room when she saw both of our dogs open the baby gate by our front door and come into the living room. They apparently were checking out how Luke was doing. Some of you might think I'm kidding when I say that, but they really are concerned about Luke! Well, more so Sophie than Ralphie. He just likes to lick him, but Sophie is once again a concerned mother! When Luke cries or fusses, she wants to get right up to him to see what's wrong. We love our dogs!

Well, that's it for now. We went out around the block in our awesome stroller yesterday to test it out and today we are planning on going shopping around town to see how things go. Wish us luck!

The First Night

It's pretty surreal to finally have Luke in the house with us.....BUT IT IS AWESOME!!!! We had an event-packed first night at home. First, Grandma Godinez drove as fast as she could from Kansas so she could be here to help out for a few days. In fact, she even managed to beat us to the house so she was waiting for us when we arrived! She couldn't wait to get her hands on the cordless baby since he was still on oxygen during her last visit. Then, after we had a chance to get settled, our neighbors, Emily and Jeffrey, knew it had been a long day waiting around at the hospital for Luke to be discharged, so they brought over a delicious dinner to celebrate. A bit later, the newest addition to the "cool block", Robert and Lindsay, came over to join in the festivities. The girls hung out inside while the boys did some "macho man" celebrating over cigars and adult beverages.

For his first night away from his brigade of nurses, Luke was a superstar! Although I was a bit nervous not to have the security of the oxygen monitors to let me know he really was okay, we all did just fine. Patrick and I traded off hanging out in Luke's room to do the feedings/diaper changings so the other one could get in a solid few hours of sleep. We started off the night with Luke in the pack 'n' play in our room, but then decided neither of us was ever going to get any rest! Plus, Luke REALLY wanted to spend some time in his room since he had been hearing so much about it for the past few weeks.

I don't think we ever fully appreciated a day at home with no plans in sight before Luke came along. We're usually running around doing 10,000 things, but we're taking a break from that for a bit. In fact, the cherry on top of our day is that I even managed to finish my Master's courses for the semester - thank goodness! We both have a break from our jobs, I have a break from grad school, and now it's time to do nothing but spend a fabulous day at home together as a family.

These Are The Days!

We're Home

Home sweet home.....a blog update with lots of new pics is on its way! Hang tight while we love on our baby :)

Off to the hospital!

Well friends, Melissa and I are off to the hospital to pick up Little Baby Luke! Wish us luck! It's been a pretty restless 12 hours!
-Patrick

One last day

And......we've made it. 20 days driving back and forth, countless hours staring at the monitors hoping for a change, and too many prayers to count. Luke is finally coming home.

Today, I was chitchatting with our nurse, Debbie, about all the babies she has seen over the years working as a NICU nurse. Some babies are there for only hours while other babies have had to stay close to a year. Some babies are flooded with visitors from family and friends while others don't even get a visit from his or her own parents. Most make it out, but there are others who never get to see life outside the little yellow rooms with blinking monitors.

When thinking about these scenarios, my only conclusion is that our experience was nothing but positive. From the outpouring of support from everyone to the incredible care we received from our doctors and nurses, it was probably one of the most positive experiences of our lives up to this point.

Tonight Patrick and I spent the evening organizing the gifts we've received and re-reading the cards of congratulations and support. Someday when Luke is older he'll see the cards and read the comments from this blog and the e-mails, and hopefully realize that he was one of the luckiest kids to go through the NICU.

Big Day!

It's looking like we're going to meet our Mother's Day goal a few days early! When I got to the hospital today, my OB, Dr. Kinder had stopped by to check in on Luke (and do a little snip snip). On his way out the door, he casually mentioned the tentative homecoming plan that he had discussed with Luke's NICU doctor. The second he left I tracked down Luke's doctor to confirm the plan, and although he can't guarantee Thursday, it is looking pretty likely that the little dude will come home then. The doc thinks that one more day of observation and strong eating is going to earn Luke a "Get out of Jail" card!!! Tomorrow morning Patrick and I will take the NICU discharge class that all parents have to take, and we'll keep our fingers crossed for a Thursday homecoming!!

That wasn't all today....

This afternoon Luke received a visit from Fr. Joe, our parish priest. He told us the story of how when he was born in India, there wasn't very good medical care and the person who delivered him thought he was going to die because he wasn't breathing very well. While his dad was outside mourning the loss of his son and building a coffin, Fr. Joe miraculously started breathing better. When he was growing up, people in his town always told him the story of how he came back to life to be with his parents. After he finished the story, Father gave Luke a special blessing for him and all other sick babies who just need a little extra help for a healthy life.

Cordless Baby

We've gone cordless!!! Just days after ditching the oxygen, Luke decided he would chow down on his bottles if it meant getting rid of the feeding tube. He's still not quite up to par on his nutritional requirements, so no coming home quite yet, but mommy and daddy have a sneaking suspicion that homecoming is in the pretty near future. Everyone keep your fingers and toes crossed that Luke makes it home to celebrate Mother's Day!




We'd like to give a little shout-out to the students in Mrs. Kilgore's class that are following our blog. Melissa's good friend, Erin, from Sigma Kappa contacted us to see if her mom, a high school teacher, could use the blog in a parenting course she teaches. Of course, we were thrilled at the idea if it meant that the students could learn about the joys, surprises, and reality of parenthood! Also, some of you have contacted us off the blog to see if you could share it with others. Always feel free to pass the blog link along because we love sharing Luke's story with others.