Cullen’s First Birthday

On June 4th our little boy turned ONE YEAR OLD!  I truly can’t believe that an entire year has passed since I held that tiny (full term) baby in my arms…and carried him while we were wheeled out of the hospital together. 

(One year doctor visit)

Dear Cullen,

Your birth was a dream come true for me.  Further proof that God has amazing plans for all of us in His own time…you are proof of His supernatural grace. 

(Aquarium visit, June 3rd dinner before dress rehearsal)

Your first year of life has been full of changes and it was a blessing to be here with you every day to see them. 

(Trying on last year’s bathing suit…funny!)

Your first smile melted my heart.  I remember the day like it was yesterday. 

Rolling over, sitting up, crawling and those first steps all brought tears to my eyes. 

You started cutting your teeth at 5 months and WOW that was no fun for any of us!

You gained weight so fast in the first 6 months (19 lbs) that we thought you may be a little chunk by 12 months, but you slowed your roll and ended the first year weighing 22.6 lbs. 

(The blue birthday cake that daddy picked out)

Some of my favorite moments with you are the quiet times when Ellie is sleeping and Daddy is at work and I can just snuggle you.  At a year old you still love mommy to snuggle you!

You have a favorite blanky and I love it when you try to carry it with you around the house…it is a lot bigger than you are!

You love our doggie Bo!  You think all dogs are named Bo!!!  He lets you pat him, kiss his ears and sometimes (when I’m not looking) you even try to ride him.  He’s not such a fan of that!

(The boy and his blanket)

You do not like strangers and you have an awful look that you give to anyone that says “HI” to you.  It’s embarrassing, but deep inside I think it is hilarious!  You have such a strong attitude!

You do this funny thing where you take off running in the house and you put both of your arms behind you.  If we tell you to stop and come back…you run faster…and laugh while you defy us!  

(Triumph!!!)

You have been fascinated with balls since you started playing with toys.  Ball was one of your first words and you have known how to throw and “catch” since you were about 7 months old.  Now you love to kick the ball outside or through the house.  I can’t wait to see what you love doing when you get a little older…sports would be my guess.

At one year old you refuse to let us feed you.  It’s annoying (for us), but I am so happy that you are learning so much SO FAST!   You know how to use a fork and spoon correctly and if we give them to you during a meal you will not use your hands at all. 

You are a great eater.  Last night, you ate steak, potatoes and corn for dinner!  Just like a little man!!  You have dropped into the 40% as far as weight in concerned and you are only in the 38% BMI, so gaining a few pounds has become your job.  We started giving you the baby food desserts/fruits mixed with cereal and you really like them. 

You have been drinking from a sippy cup since you were 5 months old.  You have never had water or juice from a bottle.  I am so happy that you love your cups so much!  We just gave you soy milk last week for the first time and you basically took a sip and that was it!  I think if it were an emergency you would take it, but you were definitely not a huge fan.

(T-ball and playing race car)

You love to read books and right now Clifford is your favorite!  Your first favorite book was a non-fiction about dolphins and then you changed to a book about trains. 

(Our little guy)

Funny story about your birthday weekend: Last year, we (I) decided to have you on Friday, June 4th.  Why?  Because I was contracting every 3-6 minutes and I was selfish…I wanted to see you!  However, this meant that we would be having you the very day of Ellie’s first ballet recital dress rehearsal.  We thought this wouldn’t matter and that the grandma’s would still take Ellie to her recital.  It didn’t work like that!  They wanted to see you, I wanted to see her and so, we scrapped the whole recital.  Come to find out…this year the recital was on the same weekend and the SAME day as your birthday.  So, my little man, forgive us, but we decided to leave you with Blakely and go to Ellie’s recital on your special day.  I know you will never remember, but I still feel a little guilt for doing that!  We made up for it with an obnoxious blue cake and I promise a fun party with your “friends” in a few weeks.

(Haircut #4)

Cullen, you are a miracle to us.  Your daddy and I love you more than words are even capable of expressing.  You bring immeasurable joy to every single person in this family.  Your smile and bright, soulful eyes are a daily reminder of the millions of prayers we sent up before being blessed with you. 

I am in love with every inch of you, Cullen Spencer Kahl!

 

I love you with all of my heart forever and ever,

Mommy 

Cullen and TOBI

It wasn’t always this easy folks…but, here is our little guy and his tired parents during one of the many treatments.

Photo credits: Ellie Grace Kahl!!!

Blessings,

Angie

My Mother's Day 2011 and CF news

My Mother's Day this year wasn't all about the church service I'd been looking forward to for months.

Or the family pictures our church takes every year on this special day.

It wasn't about the fantastic meal (my husband made yummy prime rib), or the matching outfits (that I still made everyone wear for ONE picture), or the pretty flowers.

It wasn't even about the beautiful sapphire ring my princess gifted me with...

My day was simple.
My day was beautiful.
My day was spent at home enjoying the miracles that ARE my children.

We found out a few weeks ago that our sweet little man was diagnosed with pseudomonas. We were told to avoid anyone that might be or has been sick, so church was not an option. Also, as random as this may sound... there are actually two other kiddos at our church with CF, so we would be a danger to them as well. Our last 26 days have included TOBI treatments twice a day at about 25-30 minutes each, bloody noses, a sad sounding raspy cry, diarrhea (which may be unrelated, but it started with TOBI and hasn't stopped since...poor baby).

Psuedomonas is ugly. We have known that eventually one of the three of us would likely culture it, but never did I think it would be my tiny guy! Ellie didn't culture it (as I pat myself on the back for being a mommy that runs a pretty sterile household!) which was great news. So then, the concern became about me. I hadn't been to clinic in...well, let's just say it had been awhile. I was feeling good, I thought, for having two little kids and running around like crazy every.single.day!

Cullen and Ellie's CF doc demanded that I go to clinic and get a culture done to check me for psuedomonas asap. So, I called the next day and I was at clinic the very next day! Can you sense the urgency here...

Weight check...depressing!
Moment my doc saw me...I got scolded!
PFT...AWFUL!

My FEV1 dropped 12%! Which leaves me at 84% (I double checked to make sure I am documenting the correct numbers for future reference) lung function. WOW. I went from 96% to 84% in a matter on months...albeit, several of them spent in a bed, but that is just plain scary!

My doc is awesome. And a super honest genius in the CF community. She said plainly, "If you would do your treatment you wouldn't be in this situation. I'm not going to worry about you, you will get back on track...BY DOING YOUR TREATMENTS"!!!!!

So, I got a new 50 psi compressor (which blows up a kiddie pool in 2.2 seconds) and all news meds...if you add my treatment times to Ellie's and Cullen's we are busy for almost 2 hours twice a day! I couldn't get a good sputum culture, so we did a swab which didn't show psuedomonas, but I am under orders to produce a better "glob" of the good stuff and bring it to the lab.

In all honesty, my CF clinic was a wake up call for me. Get healthy, so that all of the Mother's Day to come can be about the matching outfits and family pictures at church. (Totally kidding, but I have to have humor in the midst of this craziness)








Blessings,
Angie

In two days…

My precious little miracle man will be ONE!!! 

It has been a true blessing to wake up every single day for the last eleven months next to my two babies.

This is a snapshot of Cullen at almost 12 months old:

He is walking!!!   Everywhere!  I pray daily that he suffers no permanent damage from all of the head banging that occurs from his repeated falls...he is ALL boy!

He climbs on EVERYTHING he can lift his ten inch long leg onto!  Diaper boxes, his train, the chair in the office!!  It is going to give me heart failure…but, he is so proud of himself that I just laugh.

He is pretty much over all baby food. He eats waffles, any and all fruit, hot dogs, pasta, squash and zucchini, and prety much anything else you put in front of him. He drinks water mixed with prune juice like a big boy from a cup and almost never takes a bottle. He still nurses about four times a day. We are almost sure that he has a milk allergy and the result from giving him dairy is a stinky, vomit mess. Poor guy!  We tried soy yogurt and he loves it!  Daddy is in the process of getting a non-dairy recipe for his cake this weekend.

 

At CF clinic last month he weighed 22 pounds. I was expecting him to be bigger, but I think the walking combined with his transition out of baby food has slowed his gaining.

He is in a size 4 diaper and wears 12-18 month clothes. He has three new pairs of big boy shoes in size 5 for his 'Kahl' wide feet!!  It is so much cheaper to buy for boys!!  He has three pairs of shoes to wear with everything and I think Ellie has a different pair of shoes to wear with everything!  There are too many cute choices for girls...not that Cullen’s aren't cute too though.

Our big guy is also talking up a storm!  At about ten months he had a vocabulary of nine words. (Momma, Dada, titer for sister, bo,  dog, touch, hello, bye, ball, catch, ugh-oh).   Now he is putting these words together and saying more!  He will look at me and point to the ball and say 'ball' then walk and get it. Or yesterday he was watching Ellie at gym and he said 'mama' pointed at me and then pointed inside the gym...like he was telling me he wanted to go in there. It is so amazing to have the opportunity to watch your child grow like this!!  He can moo when you ask him what a cow says and he tries to bark to mimic Bo.  He can also identify nose, ear and mouth when you ask him where they are. His new 11 month words: eat, juice, click, Hi

I know I have Ellie to thank for this...and I AM thankful...because Cullen loves books as much as his big sister. He will sit for an entire book, point to the pics and retell it in his very own language. So fun to watch.

We spend a lot of time outside because it has been so nice. Cullen goes to the door and says 'ball, ball' until you finally take him out. He loves to swing and play bubbles, but his favorite thing to do is play ball. He can throw, kick and 'catch' any ball he lays hands on. 

He has figured out the cause/effect relationship in a lot of his toys and even during meals. He knows that if he throws an undesirable piece of food from the high chair and yells 'ugh-oh' mommy will throw it away and he is safe from eating it!!  Smarty pants!

I feel so fortunate to have the chance to be a mom all over again. With Ellie we were in and out of the hospital every day because of Bennett. I don't feel like we ever had the chance to just sit and enjoy the little things. After Bennett died we woke up daily in survival mode. It wasn't until Ellie was at least a year and a half that we slowed down and felt so e semblance of normalcy. With Cullen I am blessed to enjoy the small things every single day! 

It has been an emotional week.  Part of me thinks that no matter how many kiddos you have, when the youngest one turns ONE you start to realize that your baby days are over.  I have loved every single baby snuggle, cry, stinky diaper, reflux episode, bath, grunt, playtime, feeding, and all the little things I am leaving out. 

Being a mother is a gift...a true blessing.  And for me it is a dream come true.  This last year has to be one of the best years on record!

10 months                     11 months

 

Blessings,

Angie

This is what happened....

1. We FINALLY put our house on the market!
2. We planned and hosted 2 fundraisers... more on that later.
3. Public speaking events
4. A launch for the NICU family support program at Women's Hospital.
5. 2 radio interviews and a news story about our MOD team.
6. A baby shower.
7. Home school
8. Filling orders for work
9. Soccer season started, and we are prepping for the annual ballet revue.
10. Life!!!!

Oh, and I turned a year OLDER ( today, as a matter of fact)!! My vey cool hubbs bought me a xoom, so I could pick up blogging again even if it is on the go!!

I feel awful that I have missed two months worth of blogging our very eventful lives!!! SO much has happened and changed and it continues to do so even though I wish it would just slow down.

Cullen has had his 8, 9, and 10 month birthdays and he has gone from 2 to 8 teeth in that amount of time. He is now almost officially walking independently and I'm pretty sure he is done eating baby food. Its so sad how this time truly just flies by.

Ellie is 4 going on 14!! My big girl is such an amazing blessing and she makes my heart smile every single time I look at her.

Life is busy, but my heart is full of happiness and that is all that matters.

Happy Easter!!
Angie

I’ve never written about this…

I’ve never written about one of the most heartbreaking moments of my life and it has been weighing heavy on my heart lately. 

 

It was hard to calculate the twins odds of survival while I was on bed rest with them.

It was hard to see them for the first time b/c they were so tiny and fragile.

It was hard when I had to leave them in the NICU for the first time after I was discharged.

It was hard to leave Ellie at home for the first time to go visit Bennett alone.

It was hard to get that phone call from the doctor…the one telling us to please hurry, so we could say good-bye.

But, nothing was as hard as walking out of that hospital without my son forever. 

period.

I remember that day all the time.  I remember walking the path to the door as my two feet carried me, but I don’t remember feeling alive.

I remember the sliding door to the hospital door opening and feeling the heat on my face, but I don’t remember breathing in the air.

I remember looking at the valet attendant and shaking my head, but I don’t remember speaking any words.

Part of me went with Bennett that day.

 

My life doesn’t slow down often enough for me to grieve when I need to.  Today is one of those days that I am finding it hard to breath.

 

I love this picture…true love.

It’s TIME!!!

I’m late…

what’s new?!? 

I’m busy…

again, what’s new!!

It’s that time of year…

you know, the time that we BEG all of our friends (including those of you that read our blog that we may not know personally) and family members to please, please, please help us repay an organization that has done so much for our family.  It’s the one time of year that we talk most openly about our sweet hero, Bennett and remember how amazing his fight for life was. 

We are ready to form Team Chunky Monkey 2011 and we would be honored to have you be a part of this adventure!

I am working VERY hard to make this another VERY successful year and that isn’t possible without your fundraising and donations.  I am super excited that we are adding a fundraising event in March.  My parents have graciously offered to host this event and I think it is going to be a HUGE success!  More details on that later!!!  In addition, we have our annual crawfish boil in April!  We have such a fun group of friends and family that join us year after year and I plan on making up for missing last years celebration at this years party!!!

 

This year has been extra special for me when it comes to my relationship with the March of Dimes.  I was honored to be asked to be the spokesperson for the NICU family support program at The Women’s hospital of Texas.  I was a guest speaker at the Women’s hospital Labor of Love luncheon where I got to tell our amazing story.  It was an emotional day! 

Two weeks ago, our family of four headed up to a local TV station to join other MOD supporters in shooting this year’s kickoff video/public service announcement.  It was SO MUCH FUN!!! 

Last week, I was asked to speak at the Center.point annual March for Babies kickoff.  Again, I got to share my story.  I love that I am able to speak about our journey and be that real life connection between an organization and the difference it truly makes.  The MOD spends millions of dollars on cutting edge research to prevent prematurity every year.  Not to mention the money spent on research for pregnant mothers and babies born with birth defects.  It is an honor that I am able to use our story to convince others to help give back with us to this amazing organization. 

In the last three years our little family team has raised over $10,000.  That is FAR more than I ever thought we would raise.  We started our team as a family of three honoring a son & brother that we so desperately missed.  We have grown into a team with a consistently large group of supporters that walk with us and friends and family that donate to help us make a difference.  To be perfectly honest there is no better gift or honor than the support you all have shown our family during this journey. 

2008

2009

2010

The walk is May 1st. 

The first fundraiser is by invitation and will be held on March 26. (sign up to walk and you can count on an invite!!!)

The crawfish boil is April 9th. 

We are planning on having our very OWN team tent at the march this year ~ and we will be serving breakfast!!

 

Here is the scoop:
1. Donate to Team Chunky Monkey (TCM) and help us reach our team goal. Simply click on the sidebar to donate today or click THIS link. (click “join a team” and you will join Team Chunky Monkey)
2. Donate to Team Chunky Monkey and commit to walk with us on May 1st wearing your cool TCM shirt! Email your size to me at babyhopes1@hotmail.com.
3. Set an individual goal for yourself and have your friends and family sponsor you to walk with us on May 1st…still wearing the cool TCM shirt!

Whatever option you choose the money is donated to the March for Babies under Team Chunky Monkey and it all goes to the same wonderful cause.

How do I raise the money even if I don’t/can’t walk? Well my friends, that is simple. Last year, we had a teacher that made a deal with her principal to let teachers wear jeans for donating a given amount of money. Are you on a rodeo committee or in a family group at church? Will your boss allow you to leave a donation collection envelope in the break room or lunch room? We would love for you to share our story with all of those people and let them know exactly why we are so passionate about this cause. Encourage everyone you know to read our story at bennettandellie.blogspot.com and “get to know” us.

If each person that stalked stopped by our blog donated $1 we could raise a few hundred dollars! 

B and I are really trying to make the fundraising fun this year, so we are going to start off with this Challenge:

**For every person that leaves a comment on this post, we will donate $1 to TCM.  You don’t have to leave a long comment, a smile or “hi” will do just fine.  But, if you leave a comment we know you have read how important this March is to us and maybe you will go tell another friend or family member and they will donate…

WE are counting on YOU and the future of preemie babies are counting on US…let’s make a difference TOGETHER!  Let the fun begin!

Blessings,
Brandon, Angie, Ellie Grace, ~Bennett~ , and Cullen