Long Overdue Update

This post is long overdue.  They say "time flies".  Kacee and I have never agreed more.

We have so much to share.  Taking this on one piece at a time (one post at a time), I'll begin with the chief character of our lives, and then cover the rest of the family.

Jesus continues to amaze us.  He shows up in countless ways...love, peace, provision, grace, guidance, finances, etc.  Although we've been streaky in our wholehearted pursuit of Him, our faith has unwavered as He continues to remain faithful to us.  We serve an awesome God.

Our little family has grown to four.  A short month after Landry's birthday this year, we welcomed brother Hayes Jameson Dahlberg, on July 20th.  He's already a big ol' boy, measuring in the 97th % in length!  His birth week was flawless and within days he was home.  Landry Kate has smothered him with love since the day she laid eyes on him.  She thinks he is the coolest thing and it truly melts our hearts to watch her care for her little brother.  As of this post, LKD is now 2.5 years old, while HJD just turned 5 months.

Quick recap on each of us:

Landry Kate - 2.5 years old; healthy and hilarious; I've never known a child with a sweeter disposition...she smiles and waves to everyone at the grocery store; she gives unsolicited hugs; her nose kisses will brighten your day.  She has graduated from all of her therapies except for speech (weekly therapies for her chewing and verbal communication).  She loves Kid's Day Out at CBC.  It has yielded noticeable social/developmental  progress.  With regards to her heart, our doctors are thrilled with her checkups and only ask to see her every six months.  Her next surgery date is years away, given that she continues to have excellent reports.

Hayes Jameson - 5 months;  loves drinking milk shakes; he smiles constantly (until you point a camera at him); I've been told he is my "mini me"; already wears 9-12 month outfits; blue eyes; and when those eyes are crying, he screeches at a different volume than we're used to; He is as healthy as they come and seems to display quite a resilience to all of Landry's love germs.

Kacee - 32 years; SuperMom; an innate parenting style that makes Jesus proud; Landry's traits are reflective of the love she receives from her Maker and mother; she makes it look easy; 2015 brought a new beginning to another one of her passions: counseling; Kacee finished her required hours and is officially a LPC (Licensed Professional Counselor); She continues to work part time with patients of varying age groups, and full time with her live-in patient (me); She is gifted at speaking truth and love (2 Tim 1:7); she continues to surround herself with Godly friends; I wish I pursued my friends with the same fervor; 5 months postpartum and she looks amazing; always trying new clean eating recipes; still getting 5+ workouts in a week; Although a little low on sleep these days, her positive outlook and selfless approach to our life continues to be an inspiration to me.

Kyle - 32 years; Proud Horned Frog; still enjoying Sales for Weatherford; oil prices have fallen to a 6 year low which has made for a difficult year (lots of change) in the oilfield; altogether, I enjoy my day to day job and the people I work with; still giving baseball lessons a few times a month (it's enough to keep my arm in shape); outdoor hobbies of hunting/fishing take place less often these days; the more convenient hobbies have improved, ie. cooking, BBQ, reading children's books with various accents, assembling IKEA purchases, organzing the garage just to have it look like crap within a couple weeks, yard/house maintenance; still involved with IO (Immersion Outfitters) men's ministry; eagerly waiting for God to provide me with a Shark Tank idea...by the end of my day, my brain is mush; bedtime is still way too late; my bucket list continues to grow; I'm craving a new adventure for the calendar; I LOVE being a husband and father; I pray for each of us to flourish; and like all parents, I seek to cherish all the memories as they seemingly fly by.

Look for more posts in the near future.  2016 will begin my re-dedication to blogging our journey.

Lastly, Kacee and I have recently joined Instagram.  Follow us: @dahli36 and @kacee.dahlberg

-Kyle

We have a 1 year old!

Landry is 1! 

Auntie Erin made this sign for her birthday!

Landry finally met her Auntie Krista and her sweet cousins- Kynlee and Katelyn!
Landry was in love!

ALL of the cousins

February= Awareness

February is CHD Awareness Month!  

Prior to our 32nd week of pregnancy, we knew next to nothing about congenital heart defects or for that matter Digeorge syndrome.  Throughout our experience with Landry, her heart surgery, visits with cardiologists, and many, many echocardiograms, we've learned SO much.  In addition to the information from doctors,  we have also heard from several close friends about the heart defects they have encountered through their children or for that matter the CHD that they have.  One of my best friends had heart surgery almost 32 years ago.  Hearing her story in college was amazing and inspiring. Never did I dream that my own little girl would share the same experience, but we are so grateful that Landry has Auntie Maggie so that she can share ALL that she has been through with someone who understands at a deeper level.  It is amazing how you can go through life never realizing the prevalence of something, then when it is a part of your world you see it everywhere.  God is so good in that he allows built in support from others who share in a part of your testimony. 

We have recently been reflecting on how grateful we are to live in todays age of technology because of the ways it has directly impacted Landry's life and well being.  Words can't fully express the gratefulness we feel towards those medical professionals that continue to learn, research and understand how to help babies born with hearts that need mended.  Below are some facts about CHD...

• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
• Congenital heart defects are the leading cause of all infant deaths in the United States. 
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.  
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood. (Facts via CHF)

6 months old

We are excited to share that December 11th we celebrated Landry's 6 month birthday.  Celebrated might be a little bit of an overstatement, but we reflected on the last 6 months in awe of God's grace in our lives.  Landry is thriving and at times it can feel overwhelming to think of all that has happened in her short little life.

6 months has proven to be such a fun age.  She has developed quite the personality.  She is typically a very smiley little girl.  She tells us very long stories and she loves playing with all of her toys (especially anything that makes noise and has lights).  She is working on sitting up and she does great with a little support.  The boppy has been wonderful for her "timber" moments.  She is rarely inconsolable and if she is we recently found that if her dad does a "routine" of sorts (which may or may not involve dancing, singing and leg kicks) she goes from crying to cracking up.  I have officially conceded and realize that dad is going to be the fun parent.  It just isn't the same when mom does the routine.  Not that I am surprised that Kyle would be the fun parent.  Between his silly antics, unending voices and accents, and love for Landry, she will have life long, built in entertainment (as will I).

Our visits to the doctors have slowed down a bit.  We did recently get to the 6 month well check at her pediatrician.  Aside from having to get some shots, the check up went well.  We also just followed up at the cardiologist.  Prior to this appointment we were curious to know if everything was looking good with her heart because on and off we have heard some rattling in her lungs.  She hasn't been sick, but whether it be something in the air or our ever-changing weather we went to the pulmonologist and he suggested we just have her heart checked out again just to be sure that her noisy lungs weren't stemming from anything other than weather change or allergens.  Hearing him say that really made me nervous and as I would get fearful or worried, I just had to give it to God.  Knowing where He has brought us, it is silly that I would question his sovereign provision and plan.  That's my flesh though.  Even seeing him do miraculous things, it can still be so easy to default to fear, worry, control.....etc.  I have been daily trying to submit all things to God and work on not letting my default be such an earthly response, but instead for my default to be prayer.

Other big news that we are THRILLED to share is that Landry got off of oxygen November 6th. The first week we kept her hooked up to the pulsox throughout most of the day to make sure she maintained a good oxygen saturation.  She did great!  That said we have been cord free for nearly 2 months.  I can't tell you what a huge difference this has made. No longer do we have to be teathered to a corner of the room.  It has opened Landry up to a whole new world.  As silly as it sounds, we find great joy in carrying her around the house.  It's the little things.

It has been so humbling to continually receive emails, texts or phone calls to check in on our little one.  Time and time again we have been told that you "checked the blog"  only to find that we hadn't updated it.  It truly is our goal to be better about our updates.  We love and appreciate all of your love and interest in our little bug!  It means so much! We are so eager for all of you to meet her and get a sense of her fun personality.  As EVERYONE continues to get sick in some form or fashion, we pray a hedge of protection around Landry. We pray that she will continue to thrive and as we come out of RSV/FLU season she will be capable of meeting/playing with many of you.

Thank you again!

 

This is Landry's new doll. It is a handmade doll. It shares the heart scar that Landry has and the dress and bow was made from Grandpa Rick's shirt.  Though she won't spend time with Grandpa Rick here on Earth, we know that she knows and loves the man he has been!

Four Generations!

4 Months Old

Landry is already 4 months old! She is 22.5 inches and 11lbs 5oz.  

Things L loves to do:

-tell long stories (cooing)

-suck on her pointer and thumb or pac-o

-read books

-play (look at) with her hands

-smile

-sit up like a big girl

-cuddle

She has captured our hearts! Thank you for your continued love and support. She is doing great and we  hope and pray that before long she won't need any oxygen support. She is currently on 1/8 liter of flow. Thank you for partnering with us! We are blessed!

Time Flies

When did October get here!!??  And has it really been a month since our last real update!?  WOW...well, let us catch you up on our life...

If we could use only one word to describe the last few weeks, it would be BUSY!  When Landry came home August 13th, we tried to find our new routine.  Challenging, to say the least, but we quickly adjusted to life with an infant.  But just as we grew accustomed to our routine, we were faced with doctor's appointments and therapy sessions, which made it difficult to stick with our daily regimented feeding times, nap times, tummy times, etc.

As you can imagine, Landry has an extensive list of doctors/therapists to keep up with.  We try to strategically schedule our appointments so that we can kill two birds with one stone, so to speak.  Unfortunately, this has led to a few frustrating moments spent in waiting rooms, exam rooms, and x-ray labs, as we try to appease our daughter while the appointment is running behind.  Ultimately, we do our best to be patient (no pun intended) as our doctors/therapists do their best to spend time with each of their patients.

Altogether, over the last several weeks, Landry has had regular appointments with her cardiologist, pulmonologist (2 times), immunologist, general surgeon (3 times for her g-tube), pediatrician (3 times), developmental pediatrician (2 times), and has regular therapy sessions with Occupational therapist (2 times/week), physical therapist (2 times/week), and speech therapist (3 times/week).  Whew!!!  Thank you Lord for Kacee!  She has done an outstanding job of staying organized and on top of it all.  She keeps 3-ring binders for all all the paperwork and documentation, which helps us know exactly what's going on and how Landry is progressing.

Just to give you an idea of a "typical" day (which we don't really have "typical" days), a Tuesday might look like this...

5:30am - feeding
7:00am - physical therapy
8:00am - speech therapy
8:30am - feeding
10:00am - respiratory/breathing treatment
11:30am - feeding
2:30pm - feeding
5:30pm - feeding
6:30pm - respiratory/breathing treatment
7:00pm - bath time followed by g-tube care
7:45pm - bedtime
8:30pm - feeding


Somewhere in there, we squeeze in nap time, playing, tummy time, while Kacee diligently pumps for milk at scheduled times throughout the day.

Overall, Landry is doing really well!  Our doctors are very thorough and happy with her progress.  We feel extremely blessed to have good reports to share!  Our little bug is gaining weight!  In fact, she was actually gaining too much weight at one point, so we were advised to adjust her feeds.  Currently, she is weighing in at 10lbs 15oz.  That's almost twice her birth weight!  Amen!

Quick update on Kacee's life...

After much thought and prayer, we have decided that Kacee will be staying home with Landry and will not be returning to work.  It was a difficult decision because Kacee loves being a counselor at school, and knows that she will miss the people she works with, BUT we feel strongly that this is where she needs to be...at home with Landry.  We are so grateful Landry Kate is where she is today and Kacee feels called to stay home at this stage of Landry's life.  She has embraced motherhood and I can't imagine our family without her.  She attends every doctor's appointment, watches and learns at each therapy session, and has truly committed her life to being Landry's caretaker.  She is fully involved in ALL that Landry has going on.  There have been a few tearful moments as she reflects on the personal growth she's experienced while working in elementary schools, and realizing that her time at Tuscany Heights has come to and end.  But God's will is quite poetic...that as one chapter of Kacee's life comes to an end, another one begins.  

As always, we are so thankful to have all of you supporting us with prayer!  It means so much that you are following our bug's progress.  God is good and we feel so loved by those whom He has brought into our lives.  Thank you.

Things to pray about:

That Landry will continue to progress.  That she will stay healthy throughout the next few months, especially during RSV and Flu season.  Pray that her lungs will clear up.  She still has junk in there, which is why she stays on respiratory treatments twice a day.  Praise that we've weaned her down to 1/8 of a Liter on her supplemental oxygen.  Pray that we will soon wean her off completely.  Lastly, pray for her swallowing reflexes.  Her feedings still come thru a g-tube, so it's important that we maintain her oral reflexes.

We know that many of you are eager to get your hands on the bug.  With time, you will one day get to hold her and love on her.  For now, your love is best received by prayer.  Once Fall and Winter pass by, we hope she is strong enough and healthy enough to receive hugs and kisses from all of you!

Thank you for understanding.  We love you all!


Kacee and Kyle (& Landry)

Our Landry...

We are so excited to finally have baby portraits!  Our family photographer, Ali, came over for a quick photo shoot and we are proud to show off her work!!  She has a great eye for photography, especially baby pics.  We are so grateful "Aunt Ali" could come over and capture these moments for us!  It was a challenge to get Landry to smile while constantly having to remove her oxygen cannula.  But she hung in there for us and gave us plenty of beautiful looks! 

For more on Ali, our photographer, visit her website:

www.dahlhausphotography.com

Or her blog :

http://dahlhausphotography.blogspot.com