Wednesday, October 16, 2013

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!





Thursday, October 3, 2013

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)
















Wednesday, October 2, 2013

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:
Or her blog :


Sunday, August 25, 2013

Friends and Family,

With full hearts and abounding joy, we are excited to finally share some details!

First off, Landry is adorable!  She has such perfect little features!  As we adoringly look over her, sometimes just simply staring at her, we can't help but admire the work of God's mighty hands.  We occasionally catch a few of her smiling moments on camera, trying to decide which features belong to me, and which belong to Kacee (we're certain she has my nose!).  Her facial expressions truly warm our hearts.

It is so nice to finally be home!  After spending three months in the hospital (5 weeks with Kacee on bedrest in Antepartum; two months with Landry in the NICU) it's easy to recognize and appreciate the simple pleasures associated with being home.  We have been home now nearly two weeks and it has been so many things... amazing, overwhelming, hilarious, enriching, busy, humbling, fulfilling...and so much more.  More than anything, we feel content and grateful to have made it this far, this soon.  Landry is precious and is so patient with us as we try to figure out our new routine.  As we move her around the house, from one room to the next, while trying to avoid getting tangled up in all the chords, she just looks up at us with her big blue eyes and conveys a feeling of contentment...we can't help but laugh at her disposition during our comedy of errors.

Our living room has turned into our own version of an at-home NICU.  Many of you know that Landry came home with a few machines.  Four to be exact.  At all times, she is connected to an oxygen machine that provides a 1/2 liter flow thru a nasal cannula.  About half the day, she is connected to a "pulse/ox" machine that monitors her heart rate and oxygen saturation.  Each time we feed her, we load her milk into a bag that hangs from a mobile pole and is delivered to her at a designated feeding rate, by a machine, thru her G-tube.  Lastly, twice a day we give Landry respiratory therapy treatments, lasting 10-15 minutes each time.  Altogether, it looks and sounds overwhelming, but we are very familiar with how they all work, and all the noises, beeps, alarms, etc.  Before we left the NICU, our nurses taught us well, and now we feel like we're getting the hang of it!


It's amazing how God meets us just where we are, and gives us ALL we need to get us through the days.  We've had a few overwhelming moments, but just when we need it most, we will read the perfect devotional...as if it were written specifically for us.  Or Landry will give us a big smile and melt our hearts, reminding us how great our life is.  We are embracing each day with joyful hearts and trying to not take for granted the fact that our family is finally under one roof.  We are happy to hold her, console her, or give her a feeding when we're tired and it's 2:00am.  We praise the Lord (and Landry) each time she fills a diaper, assuring us that everything is working just right.  And just like all new parents, we are trying to find balance in our new roles.


Thank you for all the encouraging texts, emails and phone calls.  We wish we could take Landry everywhere we go so she can meet all her friends and family (all of YOU), but the reality is that we need to be extrememely careful for the next few weeks and months to keep her strong and healthy.  Especially now that kids are back to school, we must steer clear of RSV and flu season.  The absolute last thing we want to happen is for our June Bug to end up back in the hospital because she is sick.  As for now, she has officially met aunts and uncles (except for Aunt Krista and Uncle Jody, that will hopefully be before too long).  We have limited her vistiors to only immediate family.  We will continue to post pictures and keep you up to date on how she is doing.







I know we have said it so many times, but THANK YOU for walking this journey with us.  It means so much!  Please join us in praying that she will thrive here at home, that we are able to meet her needs as parents, that she will continue to tolerate faster feeding rates, that she will progress with her speech-pathology treatments, and that we can soon begin to wean her off of oxygen.

We love her more than ever and can't wait for you all to personally know sweet Landry.  She is such a sweet gift from God!

Love you all!
Kacee & Kyle




Thursday, August 1, 2013

Landry's surgery went great!  Praise the Lord!  In addition to a successful procedure, they were able to extubate her immediately, allowing her to leave the OR with only a cannula!  Today they started feeding her small volumes of breastmilk thru her new fancy G-tube.  We are hopeful that she will do well and, over time, tolerate an increase in volume.

We are amazed by this little one and so grateful that she is ours!  We will give a more in-depth update soon.

Thank you all!
Kacee & Kyle

"Let the morning bring me word of your unfailing love, for I have put my trust in you.  Show me the way I should go, for to you I entrust my life."
Psalm 143:8

Tuesday, July 30, 2013

Expedited Surgery Date

Landry's surgery has been scheduled for tomorrow around 11:00.  Originally, the August 9th surgery date was the first available time, so we were surprised to get the call today that tomorrow is the big day!  Our doctors were eager to get her surgery moved forward so that she can start healing and we can work toward bringing her home.

Please pray for our bug. Specifically that:
- surgery runs smoothly
- she is quickly extubated
- her reflux issues are resolved
- her oxygen saturation is much more stable after this procedure

Landry is one loved little girl and we are grateful for all of you lifting her up in prayer!

Landry has many prayer warriors, even all the way from Pagosa Springs, CO. The blanket on the left is the prayer quilt that Uncle Buddy and Aunt Siri sent from St. Patrick's Episcipal Church.  This blanket means so much and is a reminder of all of those that are calling out to God on Landry's behalf.

Sunday, July 28, 2013

What's Next?

Our sweet little June Bug is almost 7 weeks old and is continuing to grow and gain weight.  She is around 20 inches long and 7.7lbs.  We continue to fall more in love with this little girl every day.  She is darling!

On Tuesday, only one day after her swallow test, she was bottle-fed approximately 30ccs and did well (from what we could see). Upon further discussion with several of our doctors, we all agreed that it would be best to take it slow.  Although she performed much better than her first swallow test, we're still not sure if she's ready for prescribed oral feedings every three hours.  She did not prove herself in feeding without aspirating, which convinces us to error on the side of caution.  We appreciate our doctors' conservative suggestion of "less is more".  We DO NOT want to accelerate her feedings and cause any negative ramifications.

Knowing that the preservation of her lungs is a priority, most feel as though Landry would benefit from a g-tube.  In addition, to mitigate her issues with reflux, they will sumultaneously perform a Nissen Fundoplication.  

Benefits of a g-tube include:
- She will benefit from a full belly with each feeding
- They will do a Nissen procedure that will help reduce her reflux.  This will be wonderful and could have a positive effect on her oxygen saturation levels (which would speed up the removal of the cannula).
- Lastly, this procedure will allow Landry to come home sooner.  We can't wait to bring our little bug home.  She will continue to work on feeding with a speech therapist and our hope is that the g-tube will not be needed for long.  The goal is for Landry to get bigger, stronger and more efficient with her feeding.

As of now, the procedure is scheduled for August 9th.  That's right, surgery.  We are not looking forward to her having another surgery, but (thankfully) this one is less invasive and yields a much easier recovery.

Please pray with us....
- Pray for a successful surgery that goes smoothly.
- Ask for a speedy recovery and that she can get back to her feeding schedule in a timely manner.
- We hope that this procedure will help her oxygen satuturation levels and that she will come off of oxygen altogether!  We know she is sick of having tape on ther face and we can't wait for her to be independent of any wires or tubes.

Thank you for all of the love and support.  We continue to be amazed and humbled by all of you walking this journey with us!
Kacee & Kyle



Tuesday, July 23, 2013

Swallow Test


Thank you for all the prayers and thoughts as our little bug had her second swallow test at 9:00 this morning.  We are pleased to report that she did MUCH better this time around!  They fed her with the thickest formula they can make (which can be a better consistency for babies when they tend to aspirate).  She did well until she eventually wore out and did aspirate.  At that point we stopped the test.  In total, she had about 35ccs.  Because of the progress, the NICU doctor approved for Landry to have one feeding a day, by mouth, given by the speech therapist.  This will allow her to practice on safely eating while also working to be more efficient.  Unfortunately when Landry does aspirate, she doesn't always cough as an indicator.  The concern is that we aren't able to know for sure whether or not she is aspirating when we can't watch it on screen.  We will proceed with caution.  The last thing we want to do is compromise her breathing or lungs by pushing it to far.  We will give a more in depth report when we learn more about what the plan will be from this point forward.  In the meantime please pray for wisdom and discernment for the doctors and staff that will be making difficult decisions in the days to come. 

We love you all!
Kacee & Kyle



Friday, July 19, 2013

Quick Update:

After an impressive streak of strong performances and personal milestones, Landry has run into a speedbump.  Her oral feedings have seemingly gone well, but our doctors were wanting to make sure everything was functioning as it should.  So, they administered a swallowing analysis in which Landry was orally fed a Barium solution.  We were quite certain she was doing just fine and never expected any problems.  Often times, while being bottle fed, she would literally guzzle it down so quickly that we had to slow her down and give her a chance to breathe.  On other occasions, we would have to give her a short break from feeding because she would cough, or get a little choked up.  Altogether, we thought she was doing a pretty good job handling the transition to being bottle fed for the first time in her short 5 weeks of life.

The swallow test results were not what we had hoped for.  They confirmed that she was aspirating, and any attempt to adjust the thickness of the milk/formula solution never made a difference.

As of now, our NICU neonatologist has opted to give her another chance on Monday to see if she shows signs of progress.  We appreciate her conservative approach in giving Landry an opportunity to improve.

WE NEED YOUR PRAYERS!!  Please pray that Landry could miraculously pass her test on Monday.  And not just "pass" the test, but instead leave no doubt in our doctors' minds that she is capable to safely continue feeding by bottle.  Because of her lungs being compromised prior to surgery, it is imperative that we proceed with caution in regards to aspiration and the negative effects it would have on her.  We would never want to set her up for failure.

If she does not pass her upcoming test, she might require a "G-tube" for safe feedings until her swallowing reflexes are more fully developed.  Regardless of what happens, please pray that we could continue to fully trust God's will and sovereign control over all the details of Landry's life.

Thank you for your continued support and love for Landry.

Kacee & Kyle



 

Sunday, July 14, 2013

Progress Report

Here is glance at Landry's first ever, official, progress report:

Behavior:  A-
Comments: Though Landry may be fussy at times, it is never without a cause.  She does a great job communicating with us when something needs to change (ie- dirty diaper, she has lost her paci, or she is hungry).  

Academic Performance:  A+
Comments:  In the same way that the annoying kid sitting in the front row of your 6th grade Pre-Algebra class receives constant recognition from the teacher, Landry continues to impress her doctors and nurses.  They have been so impressed with her progress and delight in bragging on their little "student".  Landry has had a HUGE week! She has been extubated, she is 1 month old, her oxygen flow is slowly being weaned, her picc line is removed, chest drains are removed, she is now sleeping in a crib (not the isolate), feedings have increased in volume and frequency, she is wearing onesies, she loves her swing (well, her best friends that she hasn't even met yet, Jacob and Claire's swing), and she is working hard to reduce her oxygen concentration down from 25% to 21%.

Attendance:  A++
Comments:  Landry's attendance is flawless!  She hasn't missed a day in the hospital since 5 weeks prior to birth.  Not only is she present physically, but mentally as well. In between short snoozes our little bright-eyed bug loves to look around and observe her surroundings.  She likes to gaze and make eye contact with all her "visitors" in the NICU.  She has even been called "nosy" by one of the nurses who felt like Landry was watching her every move and wanted to know what she was up to. 

Participation:  A++
Comments:  Landry has been a good sport with all of her less than desirable treatments. Like it or not, she continues to participate.  She has breathing treatments 3 times a day, which really work her up, but consequently lead to some of her best naps.  She also has blood gas assessments taken twice a day. This is when they prick her heel to draw blood and check her levels.  On more than one occasion a nurse has asked Kyle if he is ok to stay and watch this procedure :)  Overall, these treatments are not Landry's favorite part of the day, but she perseveres. She is truly an inspiration.  We are so proud of her!

Additional Comments:  In Landry's 4 weeks of life she has already out performed her father in terms of outstanding progress reports.  Specifically in Behavior and Participation.  His reports may or may not have referenced his class disruption and sleeping habits, respectively.  
Landry already has more of her "teachers" rooting for her than Kyle ever did.  A worthy note...contrary to popular belief, and your subjective assumption, Kyle was twice named to the Dean's list at the TCU College of Communication...an accomplishment that marked the turning point in his academic attitude...the very last two semesters of his educational career.








Monday, July 8, 2013

BIG day

Today was a BIG day for Landry Kate (well, for all of us).

Here are some of the changes...
-Landry was extubated and has done great! She has a cannula that is providing some oxygen and flow.  As she becomes more comfortable and is able to tolerate this change, we will then work on weaning that down.  We continue to pray over this transition.  As her flow gets lower, she will be able to be bottle fed instead of tube fed.  We look forward to the day she can enjoy eating.

-She had the remaining two chest drains (that were still in from surgery) removed.  This was exciting because the drains can be uncomfortable for Landry and it also confirms that the triglyceride numbers have remained low enough for her to continue to receive breast milk instead of formula.

-We finally got to hold our little bug! This was unexpected (we assumed we would have to wait until tomorrow).  When Dr. Kupferschmidt asked if I had been able to hold Landry, I told him that we hadn't held her since the day of surgery.  After he finished removing her drain tubes, he asked the nurse if she would "let this momma hold her baby". Of course Megan (one of our regular nurses, whom we love) agreed.  This was the highlight of the day coupled with her transition from the ventilator she'd been on the previous 19 days.


-Landry's Sassue (Kyle's mom) got to hold her for the first time!  After many long hours at her bedside, it was a long awaited union between the two.  I'm sure Landry could feel the unconditional love that only a grandmother can provide.

We have rejoiced all day long in the strides Landry made.  PRAISE THE LORD!  Thank you for all of the prayers and please continue to pray that she will keep fighting and progressing.  Each stride brings her one step closer to finally coming home.

Kacee and Kyle
James 1:2-4






Saturday, July 6, 2013

A few things...

For those of you following closely...
- Her rash did go away after a day and a half! We were pretty sure that it had to do with the formula they had put her on, but as of today we aren't too sure.  This evening it came back.  This time it was more mild and she got Benadryl right off the bat.  Our hope and prayer is that we can find what is causing the breakout. 
- Her triglyceride count has been low enough to continue with breastmilk.  We will continue to monitor this number to make sure that she doesn't have an issue as we increase feeds, but for now we are happy!
- Thus far she has continued to go down on her ventilator setting letting us know that she is tolerating the transition to breathing more on her own.  We are still shooting for Monday or Tuesday for extubation.
- Her water weight is nearly completely gone and she looks like the baby she was before surgery.  We say that she is back to her "fighting weight".

Thank you for the prayers and we will keep you posted. 
Love you all!

Like Father like daughter?
Landry's artwork (a few days late)




Friday, July 5, 2013

NICU = Home Sweet Home

After an extended stay in the PICU, the doctors and nurses have finally moved Landry back down to the NICU.  Some of you have asked "What's the difference between PICU and NICU?"  Don't feel bad, we're learning all this with you (along with countless other hospital acronyms).  Here's a quick comparison:
PICU (Pediatric Intensive Care Unit) - cares for infants and children up to 17 yrs old (in certain instances even older)
NICU (Neonatal Intensive Care Unit) - specializes solely in the treatment of newborn infants

A worthy note, any child who has invasive surgery (like Landry) is taken to the PICU for post-op recovery.  In Landry's case, like any infant, they work to stabilize and return the child back to the NICU as soon as possible.  Our surgeon was hopeful that Landry would return within 3 days after surgery.

Well, let's just say it didn't really go as planned.  The NICU experienced a "baby boom" toward the end of June.  The unit has a 75 patient capacity, but was housing 90+ babies!!  There wasn't a spot for Landry!   For SEVERAL days we were told that Landry would "be taken down to the NICU tomorrow".  Well, "Tomorrow" turned out to be 4 days later.  Each passing day our patience was being tested.  As Landry's biggest advocates, we voiced our opinion to the doctors and nurses.  We even discussed our situation with the hospital administrator.  Although we were toiling with our frustrations, our hearts were reminded each day of the promises from God.  Instead of bearing what seemed to be such a burden, we relinquished our parental desires and trusted our Father.  We knew Landry was right where she needed to be.  Soon, we were taken down to the NICU...home sweet home!

Each unit is staffed with outstanding healthcare professionals.  And each unit "has its own way of doing things".  Landry has continuously received great care, BUT, with all due respect, the NICU provides a level of care that exceeds all other units.  Granted, she is an infant, so the NICU is where she belongs!    

Landry likes the NICU.  She thrives here.  Perhaps it's because the doctors and nurses make a concerted effort to challenge her body by reducing the dosage of medicines, and challenge her lungs by weening her oxygen flow on the ventilator.  This forces her to work a little harder...and she keeps rising to the occasion.  We are so proud of the way she fights!  And her performance doesn't go unrecognized by the hospital staff...she is acquiring quite a reputation as a feisty little girl!  Praise the Lord!

Landry's latests:

-Her weight has fluctuated (specifically water weight).  She is retaining fluid mostly in her head and upper torso.  It will slowly reduce as she continues to recover and her lungs work a little harder.  We are so proud of her and tell her daily, but we don't want her getting a "big head" ;-)

-For the last few days, Landry at times will "clamp down" and basically hold her breath.  She tends to do this when she gets mad and has gunk in her airway or chest.  As a helpless bystander this is terrifying to watch.  Her heartrate and oxygen levels plummet, causing her to turn different shades of colors (from bright red to purple, then to blue).  We hate when this happens, but love the strong willed spirit that she possesses.  We are told these "episodes" will lessen/stop once she's extubated.

-We are days away from extubation and continue to pray for her to have a successful transition.  Please continue joining us in this prayer.  We hope to soon give an update praising the Lord for this answered prayer.

- The last few days have been some of the most difficult for our sweet Landry.  The staff identified the presence of triglycerides leaking from her chest tube.  This forced her to transition from breastmilk (yes, Kacee is still pumping) to a low-fat formula, in hopes of eliminating the issue.  In turn, she has suffered a full body rash, which we first thought was a reaction to an antibiotic, but now are finding that it might be a milk/protein allergy.  Our doctors and nurses have consulted dietitians and are trying to get to the bottom of this.  Inevitably, these variables have added stress on our little punkins body.

Lastly, we haven't held Landry since before her surgery.  We often times feel helpless as we watch our baby endure her struggles.  But through these difficult times, we find peace and mercy in knowing our God is watching over her.  The Holy Spirit is providing her with the strength she needs.  And Lord Jesus is holding her close to His mighty chest!  Amen.

Love Yall,

Kacee & Kyle  

Friday, June 28, 2013

Slow and Steady

When did Friday get here?  This week has flown by!  It started on Monday with surgery to close Landry's chest, and now we're already heading into the weekend.

We are still in the PICU.  Same room, same boom box in the corner rockin' K-LOVE 24/7.  Perhaps the reason we haven't given an update these past four days is because not much has changed.  Her swelling has slowly improved each day, but she still has 500-600 mL to flush.  Most of the extra fluid has gathered around her torso and back of her head. The doctors and nurses are not concerned...it's just a matter of time.  Other than that, her vitals are good, her wound is healing, and she's just getting cuter and cuter by the minute!

We continue to pray for no infections, continued healing, and strong lungs.  Her true test (extubation) will come soon...please pray that she will seamlessly transition from breathing thru the ventilator to breathing on her own.

We will soon get to hold our baby once again!  Praise the Lord!!  Thank you for your prayers!

Monday, June 24, 2013

Road to Recovery

Over the last few weeks, Kacee and I have learned that at the hospital things happen rather quickly.  Take, for instance, last week when the doctors told us Tuesday evening that Landry would undergo open heart surgery the next morning (in hindsight, perhaps we were better off not having even 24 hours to dwell on it).  We knew it was going to happen sooner than later, but when the moment arrived, it was difficult to swallow (literally and figuratively).

Only a few days later, we faced a similar scenario.  The doctors were closely monitoring Landry's vitals and hoping to see her little body flush all the excess fluids that had accumulated from the invasive operation.  So, we prayed for pee....and we got it!!!  We were so happy to see the swelling go away and her body return to its normal weight.  Consequently, the doctors decided that she was ready for surgery, and to finally close her chest.  There it was....that moment when we realized the circumstances would once again change....our baby would once again be taken back to the OR, out of our sight, out of our hands....and we didn't have time to dwell on it.  We didn't have time to worry.

Soon, we were signing consent forms (which I don't suggest actually reading the content), meeting new nurses and new doctors.  And in that moment, our parental guards were UP..."These people haven't even met Landry!" "Do they even know what her circumstances are?" Even silly questions, like "Have they even done this kind of operation before?" "How long has this nurse/doctor been in practice?" "Do they know our little angel is only 13 days old!?"

And moments later, we were next to her, riding the elevator up to the 5th floor.  We each gave her a quick kiss on the head, and told her to "do good" and "we love you so much"!  We then retreated to the waiting room where we would sit waiting with all of Landry's grandparents for an update. It all happened so fast.

A couple hours later, Landry was out of surgery.  The doctors ended up giving her an aortopexy.  Big word, I know, (I had to Google it) but essentially it serves as a type of suspension which helps to remove the weighted pressure of the pulmonary arteries away from her airways.  Her chest was then fully closed and bandaged.

Currently, Landry is doing well.  We will pray for a speedy recovery, pray against infection, and hope she is released from PICU and returned to the NICU.  Once in the NICU, they will promptly attempt to extubate her.  This will be the moment of truth!  The doctor has warned us that this will be her next big hurdle.  If she cannot breath on her own, she will require a tracheostomy.  Our hope is that she will get to show the world how well she can breath on her own!  Please pray for her strength.  Pray for her lungs.  Pray that upon extubation, she will breath independently, on her own.  Pray that she can continue to thrive one day at a time, one milestone at a time.

Kacee and I are often asked how we're doing.  And sometimes I have a difficult time explaining my feelings.  So, my question to you is: How would you define God's grace?  How do you explain an overwhelming peace in moments when you should be terrified?

We feel loved.  By our families, our friends, but above all, WE FEEL THE LOVE OF OUR SAVIOR, JESUS CHRIST.  We finally understand Phil 4:7....His peace surpasses our understanding.

WE ARE SO PROUD OF OUR LITTLE JUNE BUG!  OUR HEARTS ARE FULL OF LOVE FOR THIS PRECIOUS BABY!  THANK YOU, THANK YOU, THANK YOU, FOR YOUR PRAYERS AND SUPPORT!  IT MEANS MORE TO US THAN YOU WILL EVER KNOW.

FOR HIS GLORY,

Kacee & Kyle              

Micah 7:7 - "But as for me, I watch in hope for the Lord, I wait for God my savior, my God will hear me."

Saturday, June 22, 2013

Brief Post Surgery Update

Our sweet girl is a trooper (to say the least)!  She is doing a great job and we are forever indebted to the wonderful nurse's caring for Landry. Overall, she is doing very well in recovery.  She has had some ups and downs, but for the most part our days have been rather calm (and we thank the Lord for that).  Landry is still swollen from the procedure and some of the medications that she has been taking so we are thinking that her chest will be closed on Monday.  As for now she needs to continue peeing to get the extra fluid off.  As we receive more conclusive information tomorrow, we will be sure to post an update.  We are grateful for all of the love and encouragement that all of you have provided. Thank you!

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness."  Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
-2 Corinthians 12:9

Wednesday, June 19, 2013

Surgery Update

Friends and Family,

It has been a long day.  We promise to send more details soon, but here is the quick version for now...

At roughly 10:30am Landry was wheeled away so they could start prepping her for surgery.  Close to 11:30 they started surgery and about every hour we received a call from the OR nurse letting us know that they were still working.  It wasn't until around 4:30pm when she called to tell us they were finally finishing up.  We saw Landry for a quick 10-15 seconds around 5:30, as they were wheeling her down the hall to the PICU.

We intend to add more details later, but in regards to the surgery...

- The surgeon was pleased with the outcome.  He successfully repaired both her Pulmonary Arteries AND heart defect (Tetralogy of Fallot w/ Absent Pulmonary Valve).  Praise the Lord!

- Upon closing her chest, the surgeon and his team agreed on leaving her chest cavity open.  In other words, he did not fully close her sternum.  This may sound terrible, but history has proven this strategy to be most effective in allowing the internal swelling to properly reduce.  Now, I know what y'all are thinking....and NO, she's not laying on her bed with her chest wide open.  He secured a chest patch which will cover and protect her wound until the swelling goes down.  Our doctor expects to come back and fully close her in 2-3 days.

- The next 12-24 hours will be full of ups-n-downs.  The PICU team will be diligently monitoring her vitals and adjusting her fluid levels.  The doctor urged us to mentally prepare ourselves for an emotional rollercoaster.

We love you all so much!  And though we may not get the chance to respond to all texts, emails, and phone calls, PLEASE KNOW THAT YOUR SUPPORT MEANS EVERYTHING TO US!!!  We embrace your love and truly feel your prayers.  Honestly, with what has happened over the last 6 weeks, Kacee and I admit to being spiritually exhausted.  We feel like our own prayers lack enthusiasm and perhaps fall flat.  That's when we recognize all of your prayers interceding in our life and carrying us through each day.  Thank you for providing an uplifting spirit!  We thank the Lord you are in our life.

All Our Love to You,

Kacee & Kyle

      

Tuesday, June 18, 2013

Surgery Tomorrow

Just a quick update to share that as of 5:00 today we found out that Landry will have surgery tomorrow.  She is the second case so we think she it will be around 10:00.

We will be relying on our Heavenly Father to get us through this.  Join us in prayer:

  • Pray for our sweet girl.  She has a big day ahead of her.
  • Pray for the Holy Spirit to fill her operating room.
  • Pray that God, the Great Physician, would guide the skilled hands of Dr. Kupferschmid while granting him wisdom as he works to heal Landry.
  • Pray for the nurses and staff who will be caring for Landry during and after surgery.
  • Pray for us to find peace and comfort knowing that this is the best thing for Landry.  Help us to be strong, faithful and courageous as we face the day.
Thank you, 
Kacee and Kyle

Monday, June 17, 2013

Praises!

Quick Update:

God's grace has been poured all over us!  We're happy to share a few praises...

 - Landry's GI tract is functioning properly!  We were pleased when the doctors determined there was no need for further testing.  Praise the Lord for dirty diapers!


- The doctors have extubated Landry, and her little lungs have been doing so well!  She still uses a nasal cannula, which provides positive oxygen thru her nostrils, but overall we are so happy with her breathing performance.  Ultimately, the cannula has allowed her many new milestones:

1.) The nurses can finally feed her via a feeding tube.  She now can benefit from Momma's milk!
2.) She has taken to her pacifier.  We were excited to see her natural reflexes seemlessly take effect.
3.) We can now hear her cry.  Although this may seem sad, we feel like we are able to take better care of her by simply listening for her cries.


- Our team of cardiologists have agreed that Landry will undergo surgery sooner than later.  They will operate on her arteries to reduce them from 13mm to normal size (5-7mm).  If all goes well, they are hoping to also operate on her heart to correct her heart's defect (Tetralogy of Fallot w/ Absent Pulmonary Valve).  We are praying that they will be able to perform both surgeries...in essence, a two for one deal.

- Her surgery date is yet to be determined.  The doctors are trying to get her on the surgery schedule this week (possibly as early as Wednesday).


- Our hearts are full each time we get to hold our little June Bug!

- Kacee is recovering flawlessly from surgery!  She's been up and moving around with very little pain.  She feels great, looks great, and you'd never think she just spent the last 5 weeks on bedrest!

- We LOVE our little Landry Kate!!  Our hearts continue to grow for this little angel.  Thank you so much for the prayers!  Please keep them coming!        

Friday, June 14, 2013


Update:

Landry has a cozy home in the NICU.  We cannot determine the length of her stay in the hospital, but her circumstances lead us into thinking we will most likely be here, at the very least, a few weeks.  Here's an abbreviated attempt at filling you in:

- Her pulmonary arteries are enlarged.  Normal arteries are 5-7 mm in diameter.  Her's are measuring around 13mm.  Essentially, what is happening is, these arteries are squeezing her air ways, pinching (for lack of a better term) them down to 1mm clearance.  Without getting too technical, this means she will need to have surgery to reduce the size of the arteries, thus releiving the restriction on her airways, which will allow her lungs to suffiiciently operate.  The surgery date is contingent upon other factors, including, but not limited to...

- Her intestines.  The doctors are monitoring her intestinal tract, making sure they are adequately processing.  She has undergone a barium test, in which a dye was used to radiographically track her intestinal digestion rate.  We were pleased overjoyed to see a dirty diaper!!  This confirmed that her intestines were clear of any blockage.  Further testing may take place, but all in all, this was encouraging.

- Landry is anemic.  Her red blood cells were lacking oxygen, so a blood tranfusion was administered yesterday.  This was the first of perhaps many blood transfusions yet to come.

- Two days after birth, we were finally given the
opportunity to hold her!  "Kangaroo Care", as they call it, has become one of our favorite times of the day.


- Because of her GI (Gastro-Intestinal) issue, she has not yet been fed.  For now, her IV is providing sufficient nutrients/electrolytes.  Hopefully soon, she will be cleared to receive nutrient-rich milk from Momma.

- Kacee has been consistently producing milk, which has been safely kept in a designated milk bank.  She will continue to pump, stocking up for when Landry can finally receive oral feeding.

- Kacee has recovered well from her c-section.  She is up on her feet, walking around seemlessly.  Her wound is healing properly and her pain is easily remedied with ibuprofen.

- Kacee and I have been cleared to go home.  We look forward to sleeping in our comfy bed!  We will work towards gettting into a routine of a healthy balance of time spent at home and time spent with Landry in the NICU.  It is difficult to be away from our little June Bug, but we feel she is in good hands, and fully trust our nurses/doctors.

Thank you for your support!  We will be posting additional pictures as the days pass by.  Continue praying for us.  Overall, Landry is doing well.  Please pray for her continued strength and resilience.  Also pray for Kacee to fully recover from surgery and for us to courageously surrender our will to His.

Much Love,

Kacee & Kyle

"Now may the Lord of peace himself give you peace at all times and in every way.  The Lord be with all of you."
- 2 Thessalonians 3:16
    


Wednesday, June 12, 2013

The Latest


We are so proud of our sweet baby girl!  Landry continues to steal the hearts of those around her. She has already been labeled "feisty" by the NICU staff (which we love). Thank you so much for all of the texts, calls, emails and prayers over the last few days.  Her birthday was wonderful and spirit filled.  We lack conclusive information, but our little June Bug has already been through many diagnostic evaluations.  We will receive more feedback in the near future and will promptly inform all of you.  

Couple of things we do know and can pray about :
- Landry does have some obstruction in her lungs, derived from the oversized pulmonary arteries. This can make it difficult for her to breath on her own.  The doctors were forced to intubate her shortly after she was born.  Although on a breathing tube, she has consistently been working hard to get into a breathing pattern of her own.  This is encouraging to us all.  Our prayer is that her lungs will fully function despite her enlarged arteries.  Tomorrow her doctors will look into a plan of action to see what is best for Landry and determine the available options.

-The general pediatric surgeon may do an assessment tomorrow to determine whether or not Landry has intestinal obstruction.  We have no clear evidence of this being an issue, although several factors have indicated the need to do further testing.  We pray that the doctors come to a clear conclusion and find no such issue.

LKD




 LANDRY KATE IS HERE!
5LBS 10 OZ
18 INCHES

Out the door and headed to the hospital.  We will meet our baby girl in a matter of hours.
Cousins came to give us hugs and kisses! Look at these troopers.
Pappa D, Sassue, and Grammy
Daddy is waiting outside OR to go with Landry to NICU
Grammy is suited up and ready!


The dedicated NICU team that took care of Landry immediately after she was born to help her get acclimated to life outside the womb.
A kiss from her momma before heading to NICU! 


She has already captured his heart.
First Family Photo
Landry's first sponge bath.
Look at her hair!  Kyle is already trying to teach her how to tame the cowlicks.