Saturday, April 27, 2013

Great day at the soccer field!

We have always loved watching Abigail and Andrew in their various extracurricular activities (gymnastics, dancing, t-ball, etc), but this soccer season has been an extra special treat for our family!  For starters, the weather is still comfortable (it's not sweaty hot at 9:30 in the morning, yet), but most importantly we get to watch both kiddos play on the same team and they are at an age where they understand the game better, so it's awesome to see them improve each week.  Highlight from today's game is that Abby scored a great goal and came so close a couple of other times too.  The look on her face after scoring the goal was priceless because she worked so hard for it!  She got the award for player of the game this week too!  Andrew also impressed us with how well he played defense, always knew where the ball was, and hustled.  His highlight of the game... he loves when the parents make a tunnel for them to run through at the end of the game :-).

We are so proud of these two...

Anytime they would come off the field they wanted to kiss the mascot and make sure that she was watching them play...  Here is the soccer ball mascot (thank you Auntie Danie for the precious onesie) with her taggies blanket on her head, shading her from the light rain...
Grace is always such a trooper during soccer games because despite my best effort to keep quiet, I can't help but cheer for the kids, so she is forever being woken up or startled by her crazy cheer leader mom :-)

Monday, April 22, 2013

Blessed weekend and Monday...

What a blessed weekend and start to the week...  About a week and a half ago I got a call from one of my very best friend's (Vanessa) husband asking if there was anyway that he could fly me out to California to surprise my friend for her birthday.  There was obviously a whole lot of uncertainty about Grace at that time because we were waiting to see how Grace was tolerating the high pressure in her mitral valve and if they would have to act quickly to intervene.  Her husband was so sweet that he said "even if you can only come for a couple of hours it will mean a lot to her."  Thanks to all of your prayers and God's favor, Grace seemed to improve and we felt that it was safe for me to go (I really appreciated David's encouragement to go as well!).  I left early Saturday morning and arrived in Orange County at 10:30 am.  My friend, Danie picked me up at the airport, we then picked Tiffany up, and headed to Vanessa's house to surprise her.  When we got there, Danie and Tiff went to the front door, while I went around to the back of the house and her husband let me in the back door where I waited in the kitchen for Vanessa to walk in.  Danie, Tiff, and Vanessa were walking towards the kitchen when I walked out to surprise her...  let's just say it was one of the sweetest moments ever to see the look on her face!  We shared a big hug and lots of tears... then it was on to figuring out what we were going to do with our short time together.

We ended up hanging out at her house for hours telling stories, crying, laughing really hard, and I got to bond with my new best friend "Zo Zo" (Vanessa's 4 month old daughter).

We ate at all my favorite places that we don't have in Texas...  starting with Juice it Up, then...

One of the highlights of my trip was getting to attend church with some of my best friends.  I couldn't help but marvel at the fact just 12-15 years ago we spent time together bar hopping, etc, and now the thing that sounds like the most fun is worshiping the Lord together, listening to a sermon together, and then talking about what we learned and how we can apply it to our lives.  We went to Saddleback Church (it is down the street from Vanessa's house) because Greg Laurie was preaching for Pastor Rick Warren (he is taking a sabbatical to focus on the Lord and shepherd his family through the healing process of losing their son to suicide).  Pastor Greg is special to me because it was at his church that David and I truly began to take our walk with Christ seriously (this was when we were "friends" in college :-).  It has been over a decade since I heard him preach and to do so sitting next to the girls that have seen me through SO many ups and downs in life was a gift that can't be put into words.  After a ton of fun, lots of eating, and little to no sleep, I boarded a plane to come home at 8:00 the next morning.  What a blessed 20 hours that trip was and returning home to my little people and Huzby topped off a phenomenal weekend!

Then, I got a phone call today from Grace's Texas cardiologist...  she talked to our Boston cardiologist and he said he would like to just keep an eye on Grace, instead of doing any sort of intervention at this time. She said that "he (Boston cardiologist) was excited to hear that her gradient number had gone down some and that she looked so good in clinic last week.  He was also pleased that the function of the right side of her heart was good, pulmonary band was tight, etc and that she didn't have any other symptoms of the high mitral valve pressure."  This is a huge answer to prayer and we ask that you will join us in PRAISING the Lord!  We are so grateful!  The next step is another echo on May 10th to check the mitral valve pressure again; however, they are going to try and do it without sedation (Lord help us keep our little wiggle worm still long enough for them to get a good look at her heart- way easier said than done :-).  Will you pray that the pressure in Grace's mitral valve will continue to go down, that she will remain symptom free, and that all other parts of her heart are functioning well?

Thank you our sweet village!  

Thursday, April 18, 2013

Good Evening, Everyone!  We are praising the Lord for a great report from Grace's cardiac echo today.  At our last appointment, the gradient on Grace's mitral valve was 18, which was considered severe.  We are grateful to report that her gradient today had gone down to 14-15, which is now moderate-to-severe.  While these numbers are still not ideal, we are praising God for any type of improvement at this point.  Now, we are just waiting on the feedback from our cardiologist in Boston.  Our Texas cardiologist stated that there is a 50/50 chance that Grace's valve will just continue to be monitored and we will not need to do anything at this time.  The other option is that we will still need to go to Boston in order to relieve some of the pressure on the valve (again, this could be either a heart catheter or open heart surgery).  Even though her gradient is lower, part of the reason something might still need to be done to Grace's valve is due to the damage that can be done to her lungs with prolonged high pressure (high pressure across the mitral calve can put stress on the lungs, causing long term lung damage).  If we knew 100% that she would be a candidate for a full bi-ventricular repair, then the damage to the lungs wouldn't be as big of a concern.  However, in the event that she needed to be a single ventricle (her Boston Dr's have made this possibility seem less likely), it is imperative that they don't compromise any lung function because high pressures in the lungs make a single ventricle impossible (and then you add to that the fact that high lung pressure is very often associated with Up's anyway).  Grace's chest x-ray showed some mild fluid in the lungs, but it has remained the same over the past 3 weeks (which is a praise that there hasn't been any worsening).  Her oxygen levels were good and her Dr said she sounded "great" when listening to her heart and lungs.  In our opinion, the appointment today is most certainly praise worthy!  Thank you for your prayers and please keep the prayers coming because we are nowhere close to being out of the woods (although I'm pretty sure that the rest of our earthly lives will be spent in the woods :-).  Please pray that Grace continues to eat more and more (leading to some good weight gain) and that her mitral valve pressure continues to go down and that God would get ALL the glory.  We are thankful that we can trust God and know that His plan and will are perfect; therefore, we can be at peace with the uncertainty of the situation, since it is not uncertain to Him.

I keep feeling like it is inappropriate that I haven't even mentioned the tragedy that transpired in Boston on Monday... To be honest I can't even put my feelings into words right now.  All I can say is that we LOVE Boston, it has become SUCH a special city to our family over the past 3-4 months.  God has birthed a deep, deep love for the people of this great city, we will continue to do the most powerful thing that we know how, praying fervently for God's peace, comfort, and healing to wash over them.

Wednesday, April 17, 2013

Weekend full of "hugs"...

10 years of wedded bliss is what David and I celebrated on April 12th!!! 
We celebrated with a date night that included a sushi dinner and just walking around Town Center and talking.  It is such a treat to have each others undivided attention because we have a house full of very talkative, theatrical, and funny little and big people that are always "on," so we don't get to finish a thought or sentence very often.  Abigail and Andrew had a sleep over with my parents and Grace blessed us by sleeping through the night for the first time since her surgery 6 weeks ago! 

Here is a picture of David's wedding present from me... 

Yep, getting old is the pits even for dogs... he is wearing Andrew's old underwear because we were trying to figure out if he was having an incontinence problem.  The good news is that we don't think he does or maybe he just learned to control his bladder in a hurry because we have more old undies of Abby's than Andrew, so he felt like we were taking away his doggie man card by putting him in her princess panties :-)

We enjoyed another soccer game on Saturday where both Abigail and Andrew did a great job and thought it was SO cool that David is now their assistant coach!  They actually got to play on the field at the same time and for some reason it just blessed me so much to watch them really trying their hardest and showing good sportsmanship (helping even the other teams players up with they fell down, encouraging their teammates, etc). 

I wasn't able to take pictures of the soccer game because David was helping coach and I had Grace, so here is an early morning picture of the two best snugglers ever...

Grace has her next Cardiology appointment this Thursday where they will do a sedated echo and if her mitral valve gradient is still high then we will be heading to Boston again...  The uncertainty isn't very fun, but David and I have really tried to be intentional about praising the Lord for ALL of the "hugs" that He has bestowed on us the past couple of weeks.  For instance, Grace's gradient is actually really high and yet she has continued to look and act like a healthy happy little angel.  We have heard about a number of other kiddos like Grace that have a gradient of 12-15 and they are super sick (vomiting, not eating, cranky, no energy, etc) and require immediate surgery.  We are keenly aware that the life of a heart baby is such that their heart has a tipping point and they can get very sick, very quickly.  We pray that doesn't happen of course, but for right now we have nothing but praise that Grace is doing well in a circumstance that can only be attributed to God.  She has also blessed us with the biggest and sweetest smiles that truly melt your heart and make the worst of days seem insignificant.  Some of you know how overwhelmed and overcome I have felt in the past when Grace would hardly eat, so David ended up doing the majority of the feedings because, well...  he's the best and doesn't get worried and sad about it like I do.  He would just continue to persevere with a smile on his face and confidence that it will all work out.  Today Grace polished off two bottles that I gave her (one of which was the most that she has eaten since her surgery) and I actually enjoyed feeding her!  Don't get me wrong it's not like you just give her the bottle, she pounds it and you are done.  Instead you have you have to be strategic about how and when you introduce the bottle, give her frequent breaks, and continue to distract her while feeding her (so she doesn't even know that she's eating :-).

Miss happy pants...

Will you please pray that if it's the Lord's will that her gradient pressure will be normal on Thursday's echo and if not that she will need the most minimal intervention?  We trust that if God says "no" to these requests that it is not for the purpose of being mean, but because He has a different plan in mind.  We trust that if He sends us back to Boston next week it's for a reason (whether it is because someone there needs some encouragement, there are lessons for us to learn that can only been done through that situation, etc).  We know that God is good all of the time (even when it hurts) and He calls us to make our requests known to Him.  So, please join us in praying for a miracle on Thursday and if not the miracle that we have in mind, for peace that surpasses all understanding as we trust in His plan.

Thank you for your support and we love you!!!

Wednesday, April 10, 2013

Update on Cardiologist appointment...

Thank you prayer warriors for sticking with us on this journey!  Your prayers are invaluable to us and we need them more now than ever as there is a lot of uncertainty on this journey and there are days like today where I feel emotionally drained...

We certainly have praises to share from our cardiologist appointment today...

1) Grace gained weight :-)

2) Her chest x-ray looked the same as last week (not any worse :-)

3) Her oxygen levels were on the lower side of her normal, but her Dr wasn't too concerned about that

Prayer requests..

1) We have a sedated echo again next week and if the gradient (pressure) across her mitral valve is the same as last week or worse we will be headed back to Boston for one of two interventions:  A heart catheter (which is an invasive procedure, but NOT open heart surgery) where they would put a small pin-hole in between the two top chambers of her heart to act as a pop off valve to relieve some of the pressure; the other (much less desirable) option is that Grace would have another open heart surgery to repair the valve.

2) Please pray that Grace continues to eat better and gain weight, the fluid in her lungs would get better, and if it is the Lord's will that the gradient in her mitral valve would be significantly decreased.

3) We would love to hear that there isn't any intervention needed, but it seems as though that will not be a likely scenario, so will you please pray for wisdom for her Dr's as to what Grace needs and that we can have peace in what ever decision they make?

It is easy to begin thinking about all of the details that would go back into another and unexpected trip to Boston, so I'm trying to focus on the Philippians 4:6 - "do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."  And Isaiah 40:28-29 - "Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth.  He will not grow tired or weary, and his understanding no one can fathom.  He gives strength to the weary and increases the power of the weak."

4) Please pray for peace and strength for David and I as God's will is revealed.

And Grace smiles on...  LOVE this little honey!!!

Tuesday, April 9, 2013

Cardiologist appointment tomorrow...

We have an appointment with Grace's Cardiologist tomorrow morning.  Will you PLEASE pray that Grace has gained weight (Praise the Lord she has continued to eat better than she was a week and a half ago, thanks to your prayers), that her chest x-ray looks significantly better than last week (we will be grateful for just better or even the same, but why not pray for significantly better :-), and that her oxygen levels look good?

Thank you village!!!  We will keep you posted on how the appointment goes...

Saturday, April 6, 2013

Power of prayer...

I've been meaning to post a quick update all week...  Since my last post, Grace has been doing a little better on her eating and sleeping.  We still have a ways to go, but we are SO grateful for any improvement!  This week I would constantly find myself, crunching numbers in my head (if we increase Grace's calories by this much and feed her this often, then...); wondering if the pressure in her valve could be attributed to low fluid volume intake; questioning if she was having low potassium because she's on Lasiks and not eating much, etc...; just trying to "figure out" what was going on with Grace and how to fix it.  God, in His mercy, would gently remind me that there is nothing I can do in my own strength to "help" Grace (which I totally know, but I guess I need to be reminded of that time and time again :-).  These reminders came in many forms, beginning with the first Facebook post I saw in the morning...

Then, on the way to work, one of my favorite pastors, Tony Evans, was on the radio preaching about the same exact topic...

Then, I called David on my drive home from work and after he gave me an update on how Grace had been eating that day (which was better), I again asked my "trying to figure it out" question.  I asked him "what do you think it is that has caused her to eat more?" I was thinking maybe a different feeding strategy, technique, etc, and David responded in full confidence and very matter of fact, "it is everyones prayers." He was and is exactly right!  There is no question that your prayers have been heard and felt! The point of this post is to thank you and ask that you PLEASE continue to pray for us.  Will you please pray that Grace continues to eat more, she gains weight, and her chest x-ray looks great on Wednesday at her Cardiology appointment?

On another note...  Abigail and Andrew had their first soccer game of the season today and they both did GREAT!  David and I can't stop talking about how much fun we had watching them!  They are on the same team and their coach is a friend from church (he and his sweet wife teach Andrew's class in children's church and they also taught Abigail when she was in the 4 year old class, so both kids know and love their coach).  What a treat!!!  I'm bummed that I didn't take more pictures or video, but I will do better next week...

This was during practice...

Abby scored a goal, had an assist, and hustled the whole time!  Andrew surprised us with his hustle and drive to get in the middle of all the chaos to try to get the ball.  They both took a couple of good spills and got right back up to keep playing!  We were so proud of them!

Grace and Papa hanging out during the game...

Tuesday, April 2, 2013

Grace's Cardiology appointment update...

Thank you for checking on us to see how Grace's cardiologist appointment went today!  We love her new cardiologist!!!  She has spent equal time at Boston Children's Hospital and Texas Children's Hospital, so she fully understands the philosophical differences between the institutions and can therefore help us navigate between the two.  Not to mention, (besides being extremely knowledgable) she is super sweet, humble, and truly a pleasure to work with.  We can't praise the Lord enough for leading us to her!

In regards to Grace's echo, overall her heart looks good, however she has a lot of mitral stenosis (which is to be expected, but her numbers are definitely on the high/severe side).  This issue may be the contributing factor to Grace's decreased ability or desire to eat as much (it could also be linked to her constipation and just overall recovering from surgery).  To ensure that Grace doesn't run into any trouble, we will need to see her cardiologist weekly for a while to get a chest x-ray (they are looking for fluid build up in her lungs) and weight measurement.  We need the left side of her heart to grow and the only way that can happen is for her to be consistently gaining weight.  The plan is to make sure that she gains weight by next week's appointment and if she doesn't we will have to find a way to increase her calorie intake, but if that doesn't work, she may need a feeding tube through her nose (trusting in God's provision on that one :-).  If the stenosis in her mitral valve doesn't stabilize, and better yet come down, then she may need a procedure done in the cath lab where they make a small hole between the upper chambers of the heart to act as a pop off valve.  Will you PLEASE continue to pray that Grace starts to EAT MORE and GAINS WEIGHT?!?!  Please also pray that the stenosis in her mitral valve would not just stabilize, but significantly decrease (and that God would get all the glory!).  THANK YOU sweet village!

In case you could use the same reminder as me today :-)

We are praying that God's love, peace, and favor wash over you and that you know how special you are to us!

Monday, April 1, 2013

I almost forgot to tell you...

I almost forgot to tell you...  We officially (finally) have a new cardiologist (here in Texas)!  We meet her for the first time tomorrow morning, after Grace has a sedated echo.  Will you please, please, please pray that Grace's heart exceeds the Dr's expectations with how good and strong it looks on the echo and that we love her new cardiologist?

Thank you everyone that has been praying for Grace's eating... we have certainly seen an improvement in her eating today compared to the past week, but we still have a ways to go.  So, we praise the Lord for even the smallest improvement and we ask that you PLEASE keep the prayers coming!

With David's approval, I'm going to share something even more personal and special than normal.  David's most recent school assignment was to write a personal psalm of lament and a psalm of praise (for those of you who are newer to the blog, David is currently working towards a Master's degree at Dallas Theological Seminary).  Ummmmm...  could the assignment come at a more perfect time?  After all, we are overflowing with both lament and praise :-).  Reading David's assignment in the context of all that we are going through right now makes it both precious and priceless.  I hope that you enjoy them as much as I did...

 Psalm of Lament
A Psalm of David, in the hospital after his daughter’s heart surgery

O Lord, our deliverer and redeemer,
I cry out to You as my daughter struggles,

Please, incline Your ear to my plea for relief,
Grant me an audience to oblige my request,

My daughter’s eyes race in confusion,
Her little body writhes in torment,

Why should such struggle grasp someone so young?
Why should this be her pain and not my own?

My attempts to comfort her are worthless,
I am helpless and can bear it no longer,

But You, O Lord, are not helpless,
You are not constrained to what this world can offer,

Please, Lord, come to her aid,
Do not remain silent any longer!

Lord, we proclaim Your glorious name to all who know and see us,
Many are watching to see how we respond in these trials,

Let not Your name be dishonored,
Keep doubt in You far from their minds,

The doctors work to heal our daughter, 
Nurses spend hours attending to her care,

But their effort is in vain if You do not act,
For You alone can heal and You alone can bring our daughter peace,

I will proclaim Your name even in this trial,
Regardless of the situation, You will be glorified,

For You created our daughter for Your glory and we will rejoice in Your creation,
In Your lovingkindness our daughter’s health will be restored!

Psalm of Praise
A Psalm of David, in reuniting with his family

Bless the Lord, O my soul,
All that is within me, bless His holy name,

When I step back and look at the wonder of Your creation,
I am in awe and bewildered at the truth of Your complexity,

I have not words to measure You,
I am humbled even at the attempt to try,

And yet, O Lord, You know me and love me,
Who am I, that I should be worthy of Your attention,

You know the hairs on my head and the thoughts within,
My character and abilities were fashioned by You,

Thank You, Lord, for Your providential hand in this world,
Thank You, Lord, for bringing my wife and I together into one flesh,

You knew, O Lord, how greatly she was needed in my life,
Your love and care for me is most evident through the wife You have blessed me with,

And Your blessing me did not stop with my wife,
Thank You, my Lord, for rewarding me with three children as well,

Each day spent with my family is a blessing from You,
Thank You for bringing us back together after much time apart at the hospital,

The beauty and responsibility of raising my children provides greater insight into the magnitude of
     Your love for me, 
Discipling my children in their sin, sheds light onto the reason why You discipline
     Your children,

Thank You, Lord, for Your loyal love,
Thank You, Lord, for loving me and disciplining me,

You alone are worthy of honor and glory and praise,
I shall give my heart to no other,

I will give thanks to the Lord everywhere I go,
My children will know who You are and what You have done!