12 years ago

Twelve years ago on October 24, 2000, our 5 day old Kirsten had open heart surgery.  I remember the surgeon telling us that her heart was the size of a walnut. I still marvel at God's grace in giving men like Dr. Leonard the ability and stillness of hand to operate on such a tiny, life sustaining organ.

Kirsten was diagnosed in utero with Truncus Arteriosus.  Her heart looked like this: 

She had one artery (a "trunk") and a hole between the ventricles, a ventricular septal defect (or VSD).  In basic terms, her oxygenated and unoxygenated blood mixed and traveled to the rest of her body providing insufficient oxygen to function properly.  You can see a cool animated diagram here.  The surgeon sectioned off the "trunk" into one ventricle and inserted another one to create two arteries.   He also patched up the hole with Dacron.

I can think of nothing more difficult in my life than handing our newborn to a nurse and watching them walk down a hallway to the operating room not knowing if I'd see our baby alive again.  Wondering if she would live through surgery and if it would be a success. Wondering if the Lord would chose to take her or if it was His will for her to live.

Brad and I had nothing to hold onto but Jesus Christ.  We prayed over and over for His will to be done and we prayed over and over that His will would be for her to live.

Kirsten immediately after heart surgery 

Kirsten in May this year 

Today I look at Kirsten and I'm amazed by her.  The Lord clearly wants her alive.  At every cardiology and pulmonology appointment we are reminded that the Lord has His sustaining hand on Kirsten's life.  According to medical tests, she should not be walking around with a healthy pink glow.  Her cardiologist even warns the technician before he starts her echo cardiograms that he doesn't need to be concerned.  The first man she didn't warn ran into her office to tell her how bad was the condition of Kirsten's heart. We've even been told no cardio surgeon would choose to operate on her heart in this condition. They would be very concerned about her successfully coming off the heart/lung bypass machine. 

Her quarterly pulmonary function tests reveal very low air flow from her lungs and yet she's running around and riding her bike and acting like a regular kid.

There is no other explanation than Jesus Christ's life-sustaining hand on our Kirsten.  She truly is a miracle.   The doctors don't understand.  We know it's because so many pray for our sweet daughter, and have for years, and the Lord, in his graciousness, allows her to stay with us.

We obviously don't know how long Kirsten will live.  None of us know how long we have.  But we give all the glory to God for his goodness to us.  For his grace and mercy and love that he so lavishly bestows upon us. 

May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.  

Romans 15:13

The Lord is my rock and my fortress and my deliverer,
my God, my rock, in whom I take refuge,
my shield, and the horn of my salvation, my stronghold. 

 Psalm 18:2

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

Fractured Elbow!

Get ready for some solid parenting!!!

Back in the middle of November, our elementary school hosted a fun Buckaroo Bash.  All went well... face painting, milk a pretend cow, and ride a mechanical bull.  Sounds harmless enough, doesn't it?

Katelyn and her cowgirl friends waiting to have their faces painted

Katelyn rode the mechanical bull and had a wonderful time.  Josh and Kirsten came later and waited in line for over an hour to ride the bull. Kirsten went first and fell off within a few seconds.  She started crying and said her elbow hurt.  Daddy stepped in and carried her to a table in the back of the room to soothe her with a cookie. She continued to complain that it hurt but there was no swelling or bruising or other indication of injury so we thought she was just being dramatic.  Needless to say, Josh wanted no part of the bull after that. He was very upset that he "waited in line for so long for NUFFING!"

Over the next few days she continued to tell us that it hurt but we paid little attention to her complaints since there was no indication of injury.  We even went down to Waco for Baylor Homecoming.  Kirsten wanted to wear her sling from a previous elbow fracture so we appeased her. Brad and I were getting a little annoyed at all the drama from this apparently sore elbow.

Here she is at the game with her sling on.

Then two weeks after the Buckaroo Bash, Kirsten came to me and said she couldn't touch her shoulder with her left arm - I looked and, indeed, she couldn't.  The next day I took her for an x-ray and, LO AND BEHOLD, her elbow was indeed fractured!!!  And the Parents of the Year Award goes to ....

A couple of days later we headed to Children's Medical Center for her cast. 

 Fortunately her elbow was healing well so she only had to wear her cast for 2 weeks.  Brad and I felt HORRIBLE!!!  I'm sure we will pay better attention to our children's complaints of pain from here on out!

Kirsten's Appointment Today

You can read about Kirsten's appointment today with cardiology here.

Trust in the Lord with all your heart

"Trust in the LORD with all your heart

and lean not on your own understanding;

in all your ways acknowledge him,

and he will make your paths straight."

Proverbs 3:5-6

Tomorrow is another big day in Kirsten's medical world; she begins a new heart medication. This will be medicine #10 in her daily routine not including the supplements from the natural doctor.

The new medicine, Carvedilol, is commonly used in adults but is fairly new in treating children.  The goal is to decrease the swelling in Kirsten's left ventricle. 1 side effect is low blood pressure.  The first dose will be taken at the cardiology office.  She will be given a low dose and then her blood pressure will be monitored every 30 minutes for 2 hours. We return 2 weeks later to increase the dose and monitor her blood pressure for 2 hours.  Repeat 2 weeks later. Repeat. Repeat until she's taking the highest dose her body can handle.  Another side effect is increased respiratory distress in asthmatic patients.  And Kirsten has asthma and poor functioning lungs.  So we will see the pulminologist 1 week after each increased dose of Carvedilol.

So here I am again.... scared, nervous, trying desparately to trust the Lord's sovereignty, trusting some moments and not trusting other moments, knowing in my heart that he is in control and loves Kirsten more than we possibly could but my head questions why he doesn't just heal her.  He could. I know that. I never doubt that. But he chooses not to and I don't know why.  I could go back to asking "why?" but I know that solves nothing.  My part in this is to trust my heavenly Father and pray and love my daughter.

Earlier in the week, I ran across something I wrote on her Caringbridge site.  It was Kirsten's 7th birthday... now 4 years ago.  It reminded me of what Jesus Christ has done in our lives since Kirsten's birth.  It reminded me that I can trust him because he's proved himself over and over.  I have no idea what my future holds.  If his will is to take Kirsten before I die, I know that he will be right by my side.  He promises to never leave us or forsake us (Deuteronomy 31:6).   And he promises that his grace is sufficient for us (2 Corinthians 12:9).

Here's what I wrote:

October 18, 2007

As I lay in bed last night, I wondered what to write on Kirsten's journal today. This is truly a special day. 7 years ago, I was still in labor and the future was filled with many unknowns... What would our precious baby look like? Would she appear to be healthy or sickly? How big would she be? Big enough for surgery? Will she breathe on her own? Would our baby live? How would we handle it if she died? Would we honor God? Would he be proud of us? Would he be glad he chose this journey for our family?

This week at Bible Study I studied the sovereignty and providence of God. As we look back, we can see the sovereignty and providence of God in Kirsten's life and in the life of our family. His sovereignty refers to his absolute right to do all things according to his good pleasure and purpose. His providence is his "unseen" work on behalf of people/an individual.

Brad and I have been convinced from Kirsten's first diagnosis with her heart condition in September 2000, that God did not make a mistake. Kirsten's heart problem did not slip by him unnoticed...No! In fact, he purposefully created her that way. Psalm 139:14 says, "I praise you for I am fearfully and WONDERFULLY made. Your works are WONDERFUL, I know that full well." By man's standard, she is not wonderfully made; in fact she has lots of problems by man's standard. But by God's standard, she is perfect the way he created her.

One week after Kirsten's birth, she was diagnosed with DiGeorge Syndrome, a condition that presents a seemingly endless list of symptoms. Once again, Brad and I had the opportunity to decide if we believed in God's sovereignty. Acts 17:24-25 says, "The God who made the world and everything in it is the Lord of heaven and earth .... He himself gives all men life and breath and everything else." We were still convinced that the God who created the universe created our daughter with a chromosome deletion - on purpose. It was not a fluke thing - something random that just happened. It was his divine purpose for her life and ours. But we kept asking "Why?"

And how have we seen God's providence over the last 7 years? Sometimes God's providence is not evident. Many times it's unknown, but throughout Scripture is woven God's mighty and loving acts on behalf of his children. So we know that he intervenes for us too!

When Kirsten was diagnosed in utero with her heart condition, I was anointed with oil and prayed over twice. James 5:14-15 says, "Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up." We won't know until we get to heaven if the Lord answered "No" or if he partially healed her. Perhaps Kirsten's heart and symptoms of DiGeorge were much worse than they were at birth or are today. Perhaps he improved her condition on behalf of the many who prayed for her. We've known and heard of DiGeorge kids who are significantly worse off. But perhaps he simply said, "No."

For months, we asked the Lord "WHY?" Why did you let this happen to our daughter? Why our family? What good can come out of this? How can you let this precious baby suffer? How can you let us as parents watch our baby suffer when we can do nothing but pray? I admire Paul for asking the Lord only 3 times to remove his thorn! I'm sure I asked thousands ....maybe millions of times! And one day, on June 8, 2002 (Kirsten was almost 20 months old), I felt the Lord's nudge (Actually it was more like a kick!) to stop asking him to heal her of DiGeorge and to stop asking "why". Now please understand that he did not tell me to stop asking him to heal her heart, developmental delays, other illnesses, etc. It was only to heal her of her genetic disorder.

He directed me to 2 Corinthians 12:7-9. Verses 8-10 say, 'Three times I pleaded with the Lord to take it away from me. 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. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties, [in DiGeorge Syndrome]. For when I am weak, then I am strong.'

The answer to "why" is: TO SHOW GOD'S POWER. It's a difficult lesson to learn that God's glory is much more important than our comfort and happiness and ease in life. We have our weaknesses - whether they be a physical ailment or disability, or whatever - to bring glory to God. My teaching leader at Bible Study said something beautiful! "Don't waste your suffering!" Let the Lord be glorified so that your suffering is not in vain. Don't become bitter and angry and continue to question God. The "why's" don't matter. Proverbs 20:24 even says that: "A man's steps are directed by the LORD. How then can anyone understand his own way?"

Romans 11:33-36 begs the question, "Who do you think you are questioning God?"

"O, the depth of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out! Who has known the mind of the Lord? Or who has been his counselor? Who has ever given to God, that God should repay him? For from him and through him and to him are all things. To him be the glory forever! Amen."

Through my daughter's 7 years of life, I have learned that God's purpose will prevail ("Many are the plans in a man's heart, but it is the LORD's purpose that prevails." Proverbs 19:21). I can either go along with it or stand in the way. And do I really want to stand in the way of God?

Our prayer for you, our precious Kirsten, is that this will be the best day of your life so far! We are so proud of you. We are thrilled to be your parents. What a huge blessing you are to us.

Happy Birthday, Kirsten!

Tubes

Yesterday Kirsten had surgery to have tubes put in her ears AGAIN.  This is her 5th or 6th set... honestly,we can't remember how many she's had. I have it written down on her medical history report but I'd have to look it up.

She was scheduled to be at Children's Medical Center at 3pm and surgery was scheduled for 4:55pm.  She wasn't allowed to eat after midnight the night before and only clear liquids until 12 Noon.  I put up quite a stink with the scheduler and nurse!  How can a 10 year old not eat for 15 hours???  And why does the 7am patient have the same cut off as the 5pm patient???  I was not happy! 

We asked lots of people to pray for sweet Kirsten and the Lord made the morning run smoothly.  I bought her her own box of popsicles and gatorade and told her that everytime she felt hungry, she could eat a popsicle. I kept her home from school so the temptation to eat wouldn't be worse and she played on her DS as much as she liked (we usually limit time on video related games) and we rode bikes to the park and explored the ditch on 4th Army Road (gross, I know).

She was really hungry on the ride home so I suggested a long bath.  Around 11:15, the hospital called and said Dr. Lee was ahead of schedule so could we go in NOW!  I was shocked!  We were so excited!!! Kirsten was whooping (NO, not Aggie style)!  We were praising the Lord.  Josh even sang his own version of the Hallelujah Chorus "Ha lay lu la!"  We packed her bag and met Daddy at the hospital at 12:30pm.

Surgery went well and she had a good night sleep.  She's in no pain today and even had a friend over to play.

Please pray that this surgery makes her hearing normal and reduces or eliminates ear infections.

Thank you SO much to those who prayed for us!  I still can't believe the Lord worked things around so that she was able to go in earlier!  What a tremendous blessing. And I didn't even think to pray that!  What an awesome God we serve!

Kirsten and Katelyn playing on Kirsten's DS after surgery

Kirsten's Medical Update

You can read Kirsten's Caring Bridge page here to find out the latest news about her health.

Praising the Lord!!

Please read Kirsten's ENT update here!  We are so excited!

Please continue to pray for Kirsten's Ears

Her appointment with the ENT was yesterday.  You  can read the update here.

Her appointment with Dr. Lee who will do the surgery is on Monday afternoon.

Please pray for Kirsten's Ears

http://www.caringbridge.org/visit/kirsten

Kirsten's Heart

I haven't updated in ages.  We are having a busy and fun summer!  I'll write more about that another time but wanted to let you know about Kirsten's cardiology appointment this past Thursday.  You may have read it on Caringbridge but just in case...

The EKG and physical exam were the same as a yr ago. The echocardiog​ram revealed that her leakage in the homograft (the artery of another baby that they put in during her heart surgery when she was 6 days old) is the same. That is a huge praise. Originally we were told that the homograft would have to be replaced when she was 5-6 yrs old. She would outgrow it and/or it would calcify not allowing blood to flow through it. She hasn't needed that yet.

The echo also revealed that the obstruction of blood flow through the homograft is the same (you may remember the wonderful miracle in January 2009 in which the drs determined she needed a stint but during the heart cath, the pressures revealed she didn't), the ventricles are squeezing the same but the left ventricle is bigger. This is of concern to the dr.

Kirsten's liver is fine and there is no other reason that she can see that would make the ventricle bigger. That is good news.

This all means that Kirsten's heart doesn't look good but due to her high level of activity, the dr isn't too concerned. She did add a 4th heart medicine to Kirsten's daily meds. This is Lasix, a diuretic, to see if the removal of fluid from her body will decrease the size of the ventricle. She also gave Kirsten the restiction of no prolonged running bc of the strain on her heart.

She returns in 6 months for a repeated echo.

We were sad to learn that at this point no one would be willing to operate on Kirsten's heart. She would have trouble coming off the bypass machine. Th​at means her heart and lungs couldn't handle being bypassed to perform the surgery. So that means no surgery unles it's a transplant.​ She will likely be a transplant candidate at some point. Probably years down the road. Fortunately she doesn't need any surgery at the moment. Increased leakage in the homograft would mean she needed surgery.

Tha​t's hard even to type. I spent the first few years of Kirsten's life waking up wonderin​g if she had died in the night. I don't want to go back to living that way.

We are grateful for the almost 10 years of her life. What joy she brings us. Please pray for the Lord's healing hand on Kirsten but most importantly we want his will whatever it is and for him to be glorified through it. Please pray for comfort and strength for Brad and me. It would be so much easier if we could do something to fix this. Both of us are "fixers" which I suppose is one reason we are going through this trial.

May Job's words be true of each of our family members: "But he knows the way that I take; when he has tested me, I will come forth as gold." Job 23:10

christina

For a long, long time we've asked the Lord to provide help for our family in regards to Kirsten.  She requires constant supervision and direction while doing homework daily and is easily distracted. Concentration is virtually impossible with a 3 year old little brother running around. And Katelyn gets lost in the mix because she is pretty self-sufficient. 

About a year ago, a friend told me about the state funded Medically Dependent Children's Program that provides families with special needs children an attendant or nurse to help the child.  We applied and after a long process, we qualified.  I posted an ad at Collin County Community College's career center and long story short,  Christina began working for us yesterday.

Let me just say it was a dream!!  She works for us through a home health agency. Her duties are to help with anything pertaining to Kirsten including homework, bathing, preparing food, laundry, etc.  Yesterday she folded laundry, played with the kids while I cooked dinner with no interruptions (imagine!), helped bathe the kids and changed the sheets on Kirsten's bed.  She is a sweet girl who has a bachelors degree in Speech pathology from Univ of Lousiana and is working on her Associates in American Sign Language at Collin County Comm College.  She will come over MWF afternoons and some weekends as needed. 

This truly is a blessing from the Lord.  We have felt overwhelmed for years and because of the Lord's graciousness we have some relief.  Thank you so so much to each of you who have prayed for our family for years.

Updates for Now

http://www.caringbridge.org/visit/kirsten/journal

Meds

This is what UPS left at my front door this afternoon:

2 boxes of meds for Kirsten. This is a 90 day supply of 3 of her medications.  She takes 8 daily when she's well.  When she's sick, we stop 1 of them and add 2 other inhaled medications. Such has been our life since her birth due to her heart condition and allergies/asthma.

Our 2 medicine cabinets are full so I think these will go until needed in my closet.  Why is it that the Mother's closet is the catch all for everything else too?  I've started creeping over onto Brad's side and my highly organized man patiently tolerates it without a word.  The Lord is good to me.