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!

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."

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

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

      

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

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!        

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
    

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.

10 Things You Must Know When Spending 5 Weeks Antepartum Room #141

10. You MUST bring your own pillow. Otherwise you might be stuck sleeping with this pancake.

9.  Hang up all the sweet pictures that your loving nieces send to cheer you up!

 

8.  Flowers always make you feel better.  

                                          

7.  Make sure you have wonderful friends and family to bring you meals.  Hospital food gets very old. (If you are one of the ones who brought us yummy food.....THANK YOU!)

6.  Have friends who will always keep you "in spirit" and save your spot when you can't be with them.

5.  Have sweet little ones come and visit! They are good for the soul.

 

4. When you are on bed-rest, don't get up long enough to lose your bed.

3.  Make sure you have plenty of activities to keep you busy.  Coloring books are fun (even if you are almost 30 years old).   And remember to always do your best to neatly color in between the lines, especially when a doctor unexpectantly pops into your room while making his rounds (if possbile, it's good to have a niece or two help you color the picture....that way the doctor won't give you a strange look and think to himself, "bless her heart.")

 

2.  Take joy in personal milestones.  Especially when you have made it through enough sonograms to not pass out!

1.  Make sure you have someone goofy around to bring you comic relief.

             

             

Lessons from God

Quick Update:

- Kacee had a sonogram Wednesday evening.  Her fluids measured great!  Landry weighed in at just over 6lbs, and was in picture perfect head-down position.  

- Kacee's contractions have been consistent (but not intense) and few and far between.

- Overall, it was a very good checkup.  In fact, it was so good that the doctors all agreed that Kacee was clear to go home!!!  With her amnio levels in check, and Landry in perfect position, we were given the option to leave the hospital. (Which caught us completely by surprise!)

- All our doctors are amazed at Kacee/Landry's progress, and admitted that they didn't expect us to make to this far (37 weeks!)   

- After giving it some thought and taking one night to sleep on it, we decided to pack up our stuff and return home.  Now she is enjoying bedrest from the comfort of our own couch and king sized bed!

- The doctors have scheduled a planned c-section for Tuesday, June 11th.

It sure feels good to be home for a few days.  We look forward to laying low until Landry's Birthday. Tomorrow will begin the last weekend of our lives as a family of two!  We hope to just enjoy our time together, watching movies, hanging out, reflecting on all the blessings in our life. 

Now for the lesson.... 

This is common knowledge for many of you, but Kacee and I have known each other for quite some time.  In fact, our story dates back to 6th grade.  It's fair to say that God began to lay a foundation long ago, allowing our paths to constantly cross, as we journeyed through Bradley Middle School and MacArthur High School, sharing many classes along the way.  But mere proximity is not the matter here.  As years passed, we not only tackled the same homework assignments, but spawned a friendship that would stand the test of time.  Even during our college years at Baylor and TCU, we always kept in touch and maintained a level of companionship that extended far beyond any typical friendship.  My point is that Kacee and I grew to know and love each other in ways that only true friends can comprehend.  Through the years, our late night conversations not only deepened our relationship, but enabled us to expose the depths of our hearts.  

Today, as life partners, we continue to nurture our friendship and share our thoughts with one another through collaborative discussions and intimate prayer.  As we draw from the many years we've shared, our minds and hearts uninhibitedly open up to lengthy discussions and heartfelt petitions.  

In light of our recent undertaking as expectant parents, Kacee and I ask ourselves the question: What is God teaching us right now?  Our practice is that of seeking counsel from our Lord, rather than dwelling on the seemingly "imperfect" circumstances.  We do not ignore the fact that our doctors have diagnosed our baby Landry with a heart defect and DiGeorge Syndrome, but instead, focus on how He is working in our lives and what He is trying to teach us.  Rather than focusing on why this is happening to us, we are trying to understand how we are to handle this through Him.

Our conversation led to many conclusions.  We would like to share, perhaps, our two greatest takeaways....

1.) Realizing that we know nothing.  Our intuition can sometimes lead us down a path to disappointment, or confusion.  Forgive me; I don't mean to sound melancholy.  Let me word it this way: just when we think we know what will happen, God proves to have a different plan.  For instance, a few weeks ago, we trusted our own disposition and knew that Landry was clear of all issues and free from any complications---until our 32 week sonogram revealed otherwise.  Then, we trusted our gut feeling (often mistaken as a conviction) and knew that there was no syndrome associated with our baby--until our amnio results indicated otherwise.  Then, we knew our hospital stay would last the entire length of Kacee's pregnancy--until our doctors all agreed to release us from the hospital and send us home for a few days.  Get the idea??  It's quite obvious that God is teaching us a lesson in submission.  Not in submitting to this fallen world and the tribulations associated with it, but to His sovereign plan for our lives. 

James 4:7 - "Submit yourselves therefore to God.  Resist the devil, and he will flee from you." 

Romans 8:28 - " And we know that in all things God works for the good of those who love him, who have been called according to his purpose." 

But we still feel heavy sometimes.  And many times our eyes can't help but well up with tears when we  think about what Landry might be up against.  Kacee and I pray for strength, but at times still feel weak.  Overall, we are winning the mental war, but must admit that we've lost a few battles along the way.  But we do our best to take it all in stride...the good days with the bad.  We continue to battle against fear, worry, and anxiety.  It brings us comfort to remind ourselves that Landry's condition is no  surprise to our God.  Long before we were pregnant, He knew that at 32 weeks we would be blindsided by this storm and Kacee would be restricted to bedrest.  He knew we'd be fighting our emotions.  It brings us peace that He knows what lies ahead of us.  He knows how to equip us.  We are learning to submit to the Lord and accept that we don't know the plan (which is especially difficult for Polly the Planner, aka: Kacee).   

Kacee and I have never surrendered our lives to the Lord as much as we have in the last five weeks.  It is a spiritual discipline that we are improving each day, and each time, it yields such a wonderful feeling!  To surrender to the Lord is the essence of Christianity.  In doing so, we are empowered with the Holy Spirit and able to claim victory.  It is a gift from the Lord; our soul's freedom from fear and anxiety.  It is just one of the many promises He makes to us in Scripture:

Phil 4:6-7 - "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

2.) Our hearts have grown!  Not only are we more in love with our savior, Jesus Christ, who willingly suffered for our sake, so that we could have salvation and live in eternal peace and unity with the Father, but we are also more in love with this child He's given us, Landry Kate.  We cannot wait to meet her, to hold her, to love her, and to raise her in such a way that she will know her name, and her purpose, and find her identity in Christ.  

Kacee told me a story from her childhood.  She was just a little girl, living near their ranch in New Mexico.  At school, her classroom assignment was to fill out a questionnaire about what she wanted to be when she grew up.  Without hesitation, she filled it out and told her school teacher that she couldn't wait to be a mommy!  

I believe God sovereignly laid that desire on her heart long ago.  Needless to say, Kacee has looked forward to beginning this chapter of her life.  And personally, with all due respect to all of you reading this blog entry, I cannot think of a woman more equipped to embrace the role of a loving, Godly mother.  

Kacee and I get excited when talking about Landry!  Long ago, before we had even given her a name, we prayed over our baby and agreed that she was destined to do great things.  Now, months later, we've already seen evidence of the Holy Spirit working through her as a witness to others.  

God has taught us that our heart's capacity to love increases as we grow closer to Him.  Coincidentally, that love multiplied when He blessed us with a child.  His child.  What an honor it is to parent a child of Christ!  In His perfect ways, He has prepared Landry for this life...and we are ready to embrace her!

What is God teaching you right now??