Friday, May 31, 2013

Hurry Up and Wait

Friends and Family,

Although not much has changed recently, the love and support we receive from all of you constantly lifts our spirits and brings us joy.  Certainly, there are times when our thoughts lull and our bodies are subconsciously going thru the motions, BUT that is when your prayers intercede and deliver us from mental/physical/emotional complacency. You all serve as a pillar of our strength; a cornerstone of our life, and we are grateful.  Thank you for helping us keep our cup full!

Latest Updates:

-Our doctors' consensus is for Kacee to stay here at the hospital for the remainder of her pregnancy.  Because her cervix is effaced, it is too risky for her to go home.  So, in other words, we are here for the long haul.

-Today marks the 36th week of pregnancy!  Praise the Lord, we've reached another milestone!

-Landry could arrive any day, but our doctors have agreed on delivering no later than 38 weeks.    

-We were given a tour of the NICU.  It was good for us to finally see it with our eyes and meet the lead physician.  He assured us that his team has discussed Landry's conditions and are prepared for her arrival.

-Kacee has been given permission to be up on her feet and move around more often.  She has gladly accepted and embraced this freedom!

-Downton Abbey has proven to be an effective way to pass time.  Kacee is all caught up and anxiously awaiting Season Four.

-Kyle continues to indulge himself in the abundant supply of tasty snacks and sweet treats provided by our thoughtful visitors.  He consumes immeasurable amounts and never allows any to go to waste.  And although he has maintained a workout schedule of a few days a week, he's somehow managed to gain 5lbs (give or take 5lbs).  He has always been a "good little eater".  

Again, we thank you for your love.  Please continue praying for us.

Graciously,

Kacee & Kyle

1 Thessalonians 5:16-18 - "Be joyful always; pray continuously; give thanks in all circumstances, for this is God’s will for you in Christ Jesus."



   

Saturday, May 25, 2013

Personal Milestones

In the midst of our seemingly never ending hospital stay, Kacee and I continue to recognize the countless blessings we've experienced.  It is important that we never lose sight of all the personal milestones we've attained over the last few weeks.  In a light-hearted effort, we would like to share a few of them with all of you...

35 Weeks!
Today marks not only the start of the fourth week since our admission into the hospital, but Kacee's 35th week of pregnancy!  Many of you remember the first email we sent.  Kacee had just reached 32 weeks** and was having contractions every 3 minutes.  The doctors hinted that we might need to stay at the hospital a few hours, or possibly overnight, but would soon return home.  At that time, we were completely ill-prepared for an overnight stay.  Nonetheless, we had hopes of returning home by the end of the weekend.  Little did we know!  It's hard to believe that we've stayed/lived in this facility for three weeks.  

I'm so proud of Kacee and her ability to obey the doctors' orders restricting her to bedrest.  God bless her, she's only seen/felt the sun one time in the last 22 days!  BUT, she has surpassed all the doctors' goals and expectations. I am amazed with her discipline and selflessness.  With each passing day, her maternal nature continues to emerge.  It is beautiful to watch, and I am honored to have her mother my child.

**We quickly picked up on the significance of 32 weeks.  Our doctors and nurses affirmed us that 32 weeks is somewhat of a milestone in terms of NICU babies.  We were given a plausible goal of 34 weeks, but told that every additional day in the womb was crucial.

Blood Draw -- Does anyone else get squeamish around needles? 

Let's just say....you're probably not gonna find me at a blood donation station.  I have a history with needles.  Many of you have heard the multiple stories about me passing out.  Well, I am happy to announce that I conquered faced my fears at my blood draw last week.  I did it!  It was quick and easy!  Shortly after, Kacee told me how proud she was of me...which always makes me feel good.

But depending on who you talk to, you may hear a different story.  There may be other versions out there that have a few more details.  So, before you hear it from someone else, just know...
...my mom may or may not have been with me, by my side.
...I may or may not have asked the nurse if I could lay down flat before she stuck me with a needle.
...I may or may not have removed the gum from my mouth for fear of choking IF I should pass out.
...I may or may not have lifted my feet and pedaled them (like a bike) towards the ceiling as the nurse was withdrawing my blood.
...I may or may not have sweated through the back of my shirt, and had to wipe the moisture off the examination table I was laying on.
And afterward, in the shower, I may or may not have had a 2-second uneasy feeling as I washed over the dot on my arm where the needle left its mark.  
Regardless, it was a personal milestone.  I made it thru my blood withdrawal! WoooHooo!

DiGeorge Carriers?

Kacee and I found out we are NOT carriers of DiGeorge Syndrome.  Although it doesn't change anything for Landry's circumstances, it does confirm that hers was a random occurrence.  It is just the way God designed her!
Furthermore, if Kacee and I are blessed with more children, these test results tell us they will NOT have an increased risk of having the syndrome.  Thank you, Jesus.


In theory, every day Landry stays in the womb, is two less days she will stay in the NICU.  We are hoping she will stay put another week or two.  Please continue praying for her heart, her lungs, and for her branch arteries to a) reduce in size, and b) not restrict her oxygen passageways.

Thank you for your continued support. We love y'all!

For His Glory,

Kacee & Kyle








Thursday, May 23, 2013

Amnio Reduction, Round 2 cont...

The amnio reduction was again a success!  Thank you so much for your encouraging words and prayers!  Our doctor withdrew 2 liters of fluid, thus relieving much pressure.  As expected, immediately following the procedure, Kacee was having contractions every few minutes.  But once the meds kicked in, the contractions slowly subsided.

Today, we are hoping for a low-key, uneventful 24 hours.  We look forward to laying low, reading our books, listening to a couple sermons, and maybe throwing in a movie.

We continue to feel an abundant peace with our circumstances.  We feel close to each other and to our loving God!  In addition, all of your support means so much to us.  Thank you for your prayers...please keep them coming!      

Wednesday, May 22, 2013

Amnio Reduction, Round 2

Dear Friends & Family,

This evening Kacee will have another amnio reduction.  Again, this is a risky procedure, but at this point, must be done.  It is estimated to take about an hour.  Please pray for strength, courage, and no complications.  The reduction will likely cause her to have contractions, so please pray for comfort and for them to subside.

I intend to keep you all updated later this evening, or tomorrow morning.

For His Glory,

Kyle

Saturday, May 18, 2013

World Turned Upside Down, Part II


Friends and Family,

I know it has been a while since the previous update.  Kacee and I have spent the last few days processing all the new information regarding Landry.  Today's update comes from the depths of our heavy hearts.  Although I may fail in my attempt to find the words that express all our thoughts and emotions, I'll do my best to deliver an accurate synopsis of our most recent events.  I'll give you first the facts, then the feelings.

Facts:   

You may remember that two weeks ago, Kacee underwent an amniocentesis to help us (and our doctors) gather information about Landry.  The purpose was to identify any/all chromosomal issues.  Well, our specialist received the results, and delivered them to us late Wednesday evening.  

Landry has a rare condition called DiGeorge Syndrome.  I doubt many of you have heard of it, judging by the fact that not one of our nurses has ever heard of it.  It occurs in 1 out of every 3000-4000 babies.  There are over 100 symptoms associated with this syndrome.  For us, it is nearly impossible to determine which symptoms Landry may have.  We must wait until she's born before we have conclusive evidence.  Even still, she may have symptoms that won't surface until later on down the road.

As is the case with any syndrome linked to a chromosomal defect, there is a very large spectrum to which her symptoms will be evaluated.  In other words, her symptoms could fall anywhere between very mild and very severe.  DiGeorge's is most commonly associated with heart defects (which we already know is the case with Landry), a calcium deficiency, poor immune system, learning disabilities, and a cleft palate.  There are many other possible symptoms (again, over 100), but these are the most common.

Cause? In over 90% of the cases, the disorder occurs randomly in the father's sperm or mother's egg.  Occasionally, the disorder derives from one of the parents being a carrier.  To the best of our knowledge, Kacee and I are not carriers.  BUT, in order to find out, we had our blood drawn and sent off to the lab.  It is important for us to know, because if one of us is in fact a carrier, then every future child will have a 50% chance of having DiGeorge Syndrome. 

........(deep breath, sigh).......

Feelings:

Overwhelmed, sad, worried, scared, angry, confused, upset, weak, shocked, guilty, bitter, devastated, and helpless.

Our world was once again turned upside down.  There we were, just shy of two weeks from our very first dose of bad news.  Two weeks in which we had stayed strong, took it in stride, lifted our prayers, and found peace with our circumstances.  And suddenly, our strength was gone.  We somehow were able to hold it together in front of the doctor.  We soon finished our sonogram, and retreated to our room.  

It didn't take long for the tears to arrive.  We cancelled all our plans, and just spent time together.  We verbally shared our emotions with each other.  It was tough to pour out, but necessary.  

What would I do without Kacee?  My best friend. My soul mate. Some of you may have heard me say this before, and I will continue to say it until my time on this Earth is over...my wife is God's second greatest gift to me.  Second only to my salvation. With her, I am ready to take on life's journey.  

We pray together. Praying with your spouse opens each of your souls to one another, in the presence of the Lord Almighty.  If you haven't prayed with your spouse, you are missing out on happiness, peace, and abundant life.  God delights in marriages that seek Him.  Try it and see for yourself.  

Through tears we finished our lengthy prayer and immediately felt better.  Perhaps not completely regenerated, but definitely better.  My hardened heart was once again soft.                    

Now, we feel more peace with each passing day; with each prayer. Yes, we are still battling our emotions, but our attitudes are good and positive, and spirits are climbing.  

I would like to close with a passage from a book called 'Battlefield of the Mind' by Joyce Meyer :

"Enough can never be said about the power of being positive. God is positive, and if you and I want to flow with Him, we must get on the same wave length and begin to think positively.  I am not talking about exercising mind control, but simply about being an all-around, positive person.
Have a positive outlook and attitude.  Maintain positive thoughts and expectations. Engage in positive conversation.  
Jesus certainly displayed a positive outlook and attitude.  He endured many difficulties including personal attacks--being lied about, being deserted by His disciples when He needed them most, being made fun of, being lonely, misunderstood, and a host of other discouraging things.  Yet in the midst of all these negatives He remained positive.  He always had an uplifting comment, and encouraging word; He always gave hope to all those He came near.
The mind of Christ in us is positive; therefore, any time we get negative, we are not operating with the mind of Christ."
   
"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand." Isaiah 41:10

Thank you all for keeping up with our updates.  All the prayers, texts, emails, meals, etc, lift our hearts and make us feel so loved.  God has blessed us with each of you in our lives.

Wednesday, May 15, 2013

Prognosis: Surgery & Honor

May 9, 2013
Praise the Lord for the last 48 hours.  The contractions have subsided!  In an effort to provide a quick/concise recap, allow me to refer to bullet points:

- We are still at the hospital.  We have made ourselves at home in the "Antepartum" unit, Room 141.  We occupy a suite, specifically designed for extended stayers, such as ourselves.
- Kacee will remain on bedrest which will give Landry the greatest chance of staying put.
- The only opportunities Kacee has to get out of bed is to use the restroom and shower.  As you all know, Kacee is an active individual (to say the least), so this has been quite a challenge.  She even brushes her hair and teeth while lying in bed.
- We have a sonogram scheduled today to further assess Landry's current condition.  It could also help the doctors determine if we will stay here or return home.

As I've previously stated, our reality is that our sweet baby Landry has a heart condition.  Short of a miracle, this will not change.  The doctors have done an excellent job speaking in layman's terms, explaining the details of her condition, and answering all our questions.

If everything goes as planned, best case scenario, Landry will face at least two open heart surgeries in her lifetime.  We anticipate the first surgery taking place between 4-6 months old.  If all goes well, her next operation won't take place until her mid-late teens, when her heart is fully grown.

Although these circumstances are far from what we could have ever imagined for our daughter, our faith reminds us that God planned them long ago.  Jeremiah 29:11  Kacee and I invite you all to join us in taking shelter in the Lord (Ps 18:2).  Let your heart find peace in His promises.  Landry is God's child, and He has graciously called upon us, as stewards, to lead her, love her, protect her, and raise her in His glory.  In His sovereign ways, our Heavenly Father has been preparing our hearts and minds to patiently and lovingly take care of Landry.  She is a precious gift and we are truly HONORED to receive such a blessing.

How can you help?  Continue to pray for all of us!  Specifically, pray for Landry's lungs and air passageways to develop.  Pray for God to miraculously heal her heart condition!  It is good to be direct and bold with our Lord.  He delights in hearing our requests. Phil 4:4-7 Pray for our doctors' wisdom.  Pray for physical and spiritual strength for all of us.  Pray that our will conforms to His.

Thank you for your continued support!  Your prayers lift us up and your words strengthen our spirit.  Each day, we constantly give thanks to God for each of you.  You warm our hearts.  We are forever grateful for your thoughts and prayers.  We love you!


For His Glory,

Kyle & Kacee
Hebrews 4:16 - "Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need."

Jesus: Our On-Call Specialist

May 5, 2013
We feel all of your prayers and continue to sense an overwhelming peace from our Heavenly Father!  This morning, Kacee and I discussed the "supernatural" peace we have experienced over the last couple days.  It has truly been amazing!!

Kacee is asleep right now.  It has been a long day.  But before I get into all the details, you all need to know something....

My wife is AMAZING!  Through the years, I have been around many wonderful people, and have witnessed incredible things.  But I've never seen someone so clearly demonstrate his/her faith the way Kacee has these last few days.  She is STRONG!  She is FAITHFUL!  And her Godly spirit has been a light to everyone.  It has been an honor to stand next to her through all of this.  She has faced some of the most difficult conversations of her life; the most difficult decisions of her life.  It has been quite a rollercoaster ride.

But Kacee's demonstrations of faith and courage are derived from the grace of our Almighty God.  He is the master and Creator of ALL things.  He is SOVEREIGN!  We are reminded of His promises.  And it brings us peace and joy to submit to Him and surrender our own will to His.

Update:

General:
-We have been moved from Labor & Delivery to the "Antepartum" Unit.
-We are still being closely monitored.
-We will be here at least a couple more days.  No end in sight.  Just one day at a time.

Specific:
-Kacee slept well last night and felt much more rested this morning.
-The amount of amniotic fluid in her belly has become an issue.  The on-call specialist and on-call OB came in to evaluate and quickly decided that she needed to have an "Amnio Reduction" to withdraw fluid, thus relieving the pressure on her cervix (which could cause pre-term labor).  It was the first time I let FEAR creep in.  We were both very nervous and once again, felt like one minute we were doing fine, and the next we had to decide to put our baby at risk.
-Kacee and I had some alone time to talk it over and PRAY.  Ultimately, we felt like this was our chance to trust the doctors whom we had been praying for for months.  We prayed that we could completely surrender our thoughts and concerns.  It was perhaps my most memorable moment of submitting to GOD.
-Kacee was wheeled down the hall, where our earthly on-call specialist withdrew 2.7L of fluid (over 6 lbs!!!).
-Since the procedure, she has been having contractions every few minutes.  It is getting better, but we have a ways to go.  We are hoping and praying for them go away completely!
-Kacee is not in pain, but has mild discomfort.
-One day at a time.

We are humbled by your love!  We hope to soon give each of you a big hug around the neck.  We love you!

Romans 8:28

For His Glory,

Kyle

Trying to get R&R in L&D

May 3, 2013
First off, we can't thank you enough for all the warm emails/texts/words we have already received from all of you. Each time we periodically check our phone is a constant reminder of how blessed we are for the people in our lives. Your prayers for Landry and her circumstances mean so much to us. Again, thank you for your love.

So, just a quick update:

The amniocentesis ("amnio") was administered this morning. The doc said we won't get our results for "1-2 weeks". We are praying to get our results in 1 week!

Unfortunately, the amnio triggered contractions (which is not abnormal). So the doctor ordered us to get admitted to Labor & Delivery (L&D), which is where we've been since 9am.

Kacee has received medicine to slow her contractions, and it seems to be working. They also gave her a steroid injection that will help both Kacee and Landry all around.

Our doctors/nurses have been in & out, which we appreciate. Kacee/Landry are being monitored closely, and we're hoping to see the contractions go away.

We will be staying the night here at the hospital. Our progress will determine when we'll get to come home. We pray that we can return home this weekend.

Kacee/Landry are now considered a high risk pregnancy. She will be on bed rest for a while. According to the doctor, the best thing for her is rest/relaxation. They have suggested that we do not have many visitors. We have been humbled by all of your concerns and willingness to help in any way, BUT in respect to the doctors' orders, we are asking for no visitors. We love you all so much, and ask for your continued prayers.

Right now, Kacee is laying on her side with her eyes closed. The contractions are lessening. In spite of the last 24 hour whirlwind, our current state is quiet and tranquil. I will do my best to keep yall posted.

Phil 4:6-7
Prov 3:5


For His Glory,

Kyle & Kacee

ps- for those wanting a specific prayer, ask the Lord for Landry to stay put for two more weeks. This will help her lungs more fully develop. She will need strong lungs so the doctors can focus on her heart condition.

Tuesday, May 14, 2013

World Turned Upside Down


May 2, 2013
Friends and Family, 

Tonight, we turn to you asking for prayers.

This might catch you by surprise, as it did us, but we need prayers for our sweet Landry.    Today we had an ultrasound to better understand why Kacee was measuring big.  It was an exciting time to see the baby again, and we even snuck a peak at her in 3D.  Everything looked good, but they determined Kacee’s belly contained an extra amount of amniotic fluid.  They also noticed a little fluid around Landry’s heart.  Consequently, the Dr. referred her to a specialist that was able to see her this afternoon.  The specialist was kind, but curt, concise, and to the point.  He shared with us three concerns.  Each concern needs to be further examined, which is why we’re headed back there tomorrow.  

There is a lot we DON’T know, but here’s what we DO know, so far:

1.) Landry has a heart condition.  Her heart rate is strong, and beating at a normal rate.  The issue stems from one of her valves.  Pray that our specialists can detect the true extent of her condition, and furthermore, have a treatment plan.  

2.) Kacee has extra amniotic fluid in her belly.  Historically, this could lead to pre-term labor.  We are praying against this, specifically to allow time for Landry to further develop and gain strength.

3.) Our specialist is recommending an amniocentesis tomorrow.  This will provide insight into Landry’s overall condition, thus helping us determine how we can proactively care for her prior to delivery. 

So, we turn to you with heavy hearts.  After what has been, so far, a flawless pregnancy, it was difficult to process all of this new information and terminology.  It completely caught us off guard.  

Our faith continues to bring us strength and peace.  Landry is God’s child, and we feel extremely blessed to call her our own.  Our Heavenly Father knows not only the number of hairs on her little head, but how strong her little heart needs to be.  Our comfort comes from knowing that He is in control of ALL things, and He is holding Landry close to His own heart.  

Pray for our baby girl.  Pray for our doctors.  And pray for us as we seek to learn more about these circumstances.  Our appointment is at 7:15am tomorrow morning.  

Thank yall so much!  We are grateful for the way you love us.  

Kacee & Kyle