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.

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

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

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



 

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.

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

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)

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