Our Babies

Our Babies
Luke and Claire

"Welcome to Holland"


By Emily Perl Kingsley, 1987. All rights reserved.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tuesday, March 27, 2012

A Quick Glimpse at Week 1

Whew! It has been a crazy few days trying to figure out a schedule. We won't truly get on one until next week after Grandma heads back to Kansas (yikes!) and daddy heads back to work (yikes or yay depending on when you ask me! - kidding...it has been fun having him around). Here's what we have been up to:

Claire just rests and eats and poops. She has it best. Look how tiny she is in her giant crib!! With this blanket she just blends in with the sheets.
 Daddy built Luke a swingset and he LOVES it!!! The kid refuses to get out of the swing once he is in it, so it is a good thing that Grandma doesn't mind. More pictures of the new backyard masterpiece to come...


 Luke is learning to love his sister. Sometimes he will sit or lay nicely next to her, but then a random impulse comes over him, he realizes that she isn't leaving nor is she playing with him, so he pushes her away. No pictures exist of this moment of panic because it usually involves all three of us reaching to grab him before he sits on Claire's face.
 The neighbor girls finally meet!!! Some of our best friends, Rob and Lindsay, had baby Eva (on the right) one month ago, so the girls are just a few weeks apart. Ms. Ellen (Lindsay's mom) even bought them matching outfits to wear for when they are a bit older. Look at how much bigger Eva looks compared to Claire!!! There is only a 3 lb difference between them right now.
 Moment of panic about to strike.....Watch out Claire!
 And we have a double stroller!!! I debated and debated on what to do, but I have to say, I am excited that we got the double version of our single stroller, and we love this one as much as the first! Apparently, Luke does too.
 Heading out for our first stroll! Ignore my crazy hair. Shower + walk + humidity = crazy hair. The kiddos didn't judge. :)

Sunday, March 18, 2012

Family of Four

When Patrick surprised me at my Junior formal at Sigma Kappa with a proposal, I never thought I would be headed to the hospital exactly six years to the day to have our second child, Baby Claire. Grandma Godinez headed back to Shreveport to hang out with Luke, we put the finishing touches on the new nursery, and we spent our last day as a family of three having a quiet dinner and enjoying an evening at home. At 5 a.m. the next morning, Patrick and I headed to the hospital while Luke snored loudly in his bed, not realizing how his life was about to change, but then again, neither did Patrick and I.

Everyone that has heard my labor and delivery stories has pretty much decided that I was made for having babies. While I always thought no labor could get easier than Luke's, I was wrong. I had been having contractions for weeks and was progressing toward labor on my own. The nurse gave me a small dose of medicine, and labor started full force without any meds to actually induce labor. Luckily, I had Nurse Mandy, the same nurse who delivered Luke, and she distinctly remembered how quickly Luke arrived into the world, so she encouraged me to get my epidural early. Did I mention she is a SAINT!?!?!? No sooner had she said this and I was praying the anesthesiologist would sprint to my room. In about 15 short minutes, the contractions were off the chart and I was happily taking a nap. Within two hours I was dilated and ready for baby. Just like with Luke, I sat up for about an hour so she could wiggle into position, the doctor came, I pushed three times and TA-DA --- Baby Claire arrived!!!!!

All we could think was, "She's SO tiny!!!" Let me remind you: Luke was 8 lbs 6 oz and his head was in the 99th percentile...that is no lie. So, when Claire came out a dainty 6 lbs 4 oz we could barely believe it. Considering that the memories of Luke's problems immediately after birth were fresh in our memories, I constantly asked the doctor if she was ok, to which they replied she was perfect. Imagine our sense of relief when they placed her in our arms and she actually stayed with us instead of instantly being whisked away! It was short-lived.

After about an hour or so, the nurse came by to take Claire for a bath and check up with the doctor. After an hour of her being away, I started to panic because things were taking far too long. I frantically sent Patrick in search of our baby girl, and someone gave him the number to the nursery. When he called, I could hear through the phone, "Oh, we'll send the doctor down to talk to you." Envision two completely panicked parents. NOT GOOD. While there, Claire forgot that she wasn't living happily in a bag of water and decided to have some breathing issues just like her brother. Well, kind of. Her issue wasn't because of weak lungs, but rather because her bottom jaw was recessed when she was born and the doctors believe her tongue placement restricted her airways. Pair that with the fact that she has a brother with Down Syndrome - the whole floor went into high alert. What were the odds that a mom in her 20s who had a full genetic screening, care by a fetal specialist, and a son with Trisomy 21 (which occurs COMPLETELY by chance) would have another child with Down Syndrome were the whispers between doctors. Claire had "Indicators" they said....heart murmur, wide bridge on her nose, small ears, low tone, a small jaw, a dimple above her butt.....

Let me tell you: The worst thing a doctor could do to a completely stressed out mom is speculate on what COULD be wrong. They wanted to monitor her closely so off she went to NICU while Patrick and I were left in complete shock of what was happening. Thankfully, our friend Kristin, who is a labor and delivery nurse at our hospital, was up visiting because she was going to take pictures of Luke meeting his sister for the first time. While that didn't happen, it was great to have someone who could get us answers quickly. Her help, paired with Nurse Mandy's rage that we weren't getting quicker answers, helped things move quickly. While details are a bit of a blur, the abbreviated version of the story is that Claire got settled in the NICU and was 100% fine! Her oxygen and heart rate were a bit low, but nothing requiring special treatment...It was just supposed to be a quick monitoring....

We would like to take volunteers on who would like to take Claire when she is sixteen. :) This last week has proven that she is going to be our temperamental child. We thought we would be headed home on Friday....until she got jaundice and needed a tan.....which made her lethargic.....which made her not want to eat....which made her oxygen borderline. Really?!?! I know I am stubborn and insist on doing things on my own terms, but at least I do it in the comfort of my own home! So, where we are today:

-  All tests have come back completely perfect. No lung, heart, brain, muscle tone issues...NADA!
- Chromosomes are PERFECT! All those indicators....well, apparently that is just how our children look. We could have 100 kids, and we're sure they would worry every single time.
- Jaundice is gone!!!
- Claire is eating 45 ml at every other feeding with a bottle (tube fed at the other feedings)
- She has to eat 50 ml at every feeding in 20 minutes for a solid day (with an extra day of monitoring we think) to come home so we can be a happy family of four.
- We moved to a room with a window so mommy and daddy don't lose their sanity.
- Luke was allowed to briefly sneak a peek at his sister today because the nurses take pity on us that both our kiddos ended up staying in the hospital.

Thanks for all the visits, calls, prayers, food, etc. Although Claire's condition isn't serious AT ALL, it is still emotionally draining waiting out her stubbornness, so thank you for everything (Patrick REALLY thanks you because it is keeping me somewhat sane although he might disagree with that label!)

Here are some pics from the week:
 Welcome Baby Claire!!! See...she's so TINY!!!!
 Told you: It was an easy labor...my hair isn't even messed up!
 1st official picture with Grandma Godinez :)
 First picture with Mommy and Daddy.
 Amanda came to visit....
 And Laura, aka "Girl Mahaffey"....
 And Suzi....
 And David and Angela (Notice David is rocking mustache March!!)
 Daddy and baby girl....
 Mommy and her kiddos. And finally....our first official family picture. Notice how thrilled Luke is to have a sister. We'll convince him it isn't that bad and that she might actually be fun to have around. Keep your fingers crossed it is soon.

Monday, March 12, 2012

My little baby...



My little baby boy is all grown up! Or, at least I think so considering that I'm about to have Baby Claire in the morning. Luke has been such a help lately around the house since I'm too puffy to get around as much as I usually do. His latest interest is BabyFirst TV. For those of you without kids - let me tell you - it is MAGICAL!!! Although the characters are a wee bit creepy, they are not nearly as scary as Teletubbies or as obnoxious as Barney. Before you know it, you'll be singing along to the songs too....The only ones of you judging me right now are those of you without kiddos of your own!


 

Not only does Luke enjoy restful time watching tv with me, but he is VERY good at feeding himself dinner. Notice that he is eating spaghetti in that second picture, and there is actually spaghetti in the bowl and in his mouth - not all over the highchair. This is a major accomplishment in our lives, and it wouldn't have happened so quickly without his saintly teachers who work on this each and every day. They are also a bit more ambitious that we are and only use open cups for drinking...we'll get there here at home.



Luke even likes to help with chores around the house. I was trying to clean up before Claire's arrival, and Luke wanted to do his part. He disappeared from the kitchen one afternoon, and I found him in the bedroom taking care of the laundry. Unfortunately, he is kind of like his daddy and only gets what is his, but hey, it is a step in the right direction!

 

Finally, there I am on my last night of Claire's pregnancy! Some days I felt like I was pregnant for 27 years, and other days I feel like we were just finding out. I've been ridiculously sentimental that Luke isn't going to be my baby anymore, so we've been celebrating all of our "lasts" as a family of three. Every time we go to do something, I say, "Oh, Patrick, aren't you sad...this is the last time that just the three of us will....." Nope. He isn't sad. Men. They never understand. Here is our last picture of our little family of three. Stay tuned for our the next blog where baby Claire joins the family!!!



Monday, March 5, 2012

Well....

Sorry we have been seriously slacking on the blog posts! I think God makes a first pregnancy and baby really easy so you get fooled to do it again. Not that this pregnancy has been difficult by any stretch of the imagination...it has just been more difficult than Luke's. Here's a good story about our weekend:

On Friday, March 2nd, Claire decided it would be really funny to pretend like she wanted to come a few weeks early. My contractions started around 10 p.m. while we were at our neighbors' house (yes, I was up that late), but I didn't think anything of it because I've had TONS of contractions this pregnancy. Well, by 3:30 they were strong and every 5 minutes. An hour later I started getting uncontrollably sick (I'll spare you the details), and by 6:30, nothing was left in my very sore body. By that point I was slightly freaking out, so we called our good friends David and Angela to watch Luke and we were off to the hospital. I refused to be that person who cried wolf that they were in labor when it was just Braxton Hicks, but they hooked me up to the monitor....and.....my contractions were strong and every 2-3 minutes. The looks on the nurses faces were pretty funny, considering the situation. After 1.5 liters of IV fluids and a little food, I could finally feel my body again. The stinking contractions lasted all the way until around 1:30. Do the math: That is a flipping long time to have contractions for them to do NOTHING other than make me extremely sore!!!! We're convinced that this is just another indication that Claire will have an even stronger personality than her brother or me, which is very hard to believe for any who knows us. Finally, at 5:30 they let me go free with the hope that Claire can stay an internal baby for at least another week. Stay tuned.

In other news, Luke is growing like a weed!!! I keep saying that I want Claire to hurry up and get past the infant stage (yes, I know to cherish every moment....blahblahblah), but I LOVE the stage Luke is in. In the evenings before bed we cuddle on the couch, drink milk, and watch Baby TV. For those of you who don't have 1,000,000,000 stations on your television, this might just be the greatest invention for toddlers. All of the segments are about 10 minutes and are so cute they are creepy. Luke loves to dance and clap to the songs, and it always cracks us up. When we're not busy cuddling, he is getting more adventurous with walking. We're going from one piece of furniture to another without any help, and we walk into school just holding one hand!!!! When we're too tired to roam around the house, the ipad has TONS of fun games!! Here's a video of Luke playing his favorite monkey game with Patrick helping with sound effects.

http://www.youtube.com/watch?v=ZWEXOCpYspE