Cardiac Follow-up Appointment

Hard to believe, but Koal is 7 weeks old today! WOW…as much as we’ve been through in the past 7 weeks, time sure has flown!  Our little man is doing well is growing and changing daily.  He’s up to 11 lbs now and is getting longer (though I can’t remember the exact measurement from this morning’s appointment!) and growing like he should. We had our first follow up visit with our cardiologist, Dr. shah, at Children’s Mercy today.  They preformed an echocardiogram and the doc says things look good with Koal’s shunt and they don’t see anything unusual or different from before.  His oxygen levels are great and he said he was pleased with his growth and status thus far. What a huge praise that everything looks great following his surgery last month and that he’s growing and doing well as they expected!

We spent a very long time with Dr. shah this morning discussing the options for Koal’s future surgeries and heart “repair” possibilities.  It is amazing what surgeons can do to help ‘fix’ little hearts in our day and age!  Listening to the options was a bit overwhelming, however, and brought back the not-so-far removed familiar feelings of concern, apprehension and questions about the unknowns of our future. At this point there are 3 options for surgical repair on Koal’s little heart.  Two are considered 4 chamber repairs, more complicated and difficult series of surgeries to make Koal’s heart return to a 4 chambered organ. The 3^rd option is a simpler 3 chamber repair with more long-term surgeries needed.  All three options have long lists of pros and cons and at this point there is no clear direction for what would be best for our little guy.  Our cardiologist plans to send Koalton’s information to a number of hospitals and surgeons around the country for consultation, as well as discussing the options with the surgical team at Children’s Mercy before we move forward in any way on decision making.  The reality is, Koal’s condition is so unusual and complex that it, and therefore some of the surgical options, are out of the realm of expertise for even the doctors at Children’s Mercy.  There is a good chance we will have to travel to another part of the country to have more surgeries, depending on what everyone thinks is best. AND, Unfortunately, even if the decided upon future surgeries are initially HUGE successes, the long-term effects and life expectancies are unknown.

Please pray for the doctors and surgeons involved in the process of working with us to determine the best options for Koalton’s future. Pray for guidance and wisdom, for clarity and understanding as they weigh pros and cons, discuss possible options and come to conclusions about what they think is best.  Please pray for our family as well, as we walk through this process with Koal’s team of doctors: that we would trust that God continually goes before us and that He will guide and protect us, that we would remember always that He is the Great Physician and Healer who is in control and knows our future well, and that we would also have clarity and peace about each decision made. Pray the God would give us a clear and obvious direction and answers to questions and unknowns, so that we would feel Him showing us the way and know He is leading us through His desired plan for this part of Koal’s life.  Please continue to pray for the little guy himself, as well! Pray that Koal would continue to do well as he grows, that there would be no complications or outside issues before the next surgeries, and that God would continue to receive the abundant glory He deserves in this.

Your continued prayers, concern, encouragement and support mean the world to us.  Please know we are so thankful for each of you and your love for our little Koal.

Wanted to share a quick video from a blog I follow. This family, the Hammits, have a young boy with a heart defect also. While the defects are a bit different, their story is much like ours.  Little Bowen has been through a number of open heart surgeries at a very young age like Koal, and the emotions, hopes, struggles and faith of his parents are so familiar to us. Matt Hammit, Bowen’s father, is the lead singer for the band Sanctus Real, and this is a video of him sharing about a new song they have just released.  If you like what you hear, buy the song! Proceeds go to “Whole Hearts,” a Congential Heart Defects foundation.

http://bowensheart.com/2011/05/31/all-of-me-now-available/

Five weeks!

Can’t believe our little one is over a month old already! What a crazy five weeks it has been…and what a long way we have come.  We continue to praise God daily for all He’s done and continues to do, as Koal heals and grows and we learn all about him and fall more in love with him (as well as adjust to life as a family of five)!

Koal’s one month well visit last week went very well.  He was up to 10 pounds 6 ounces, and everything looked good health wise.  Today he went back to the pediatrician to be circumcised, and that also went well.  He’s up to 10 lbs, 9 oz, and doing great.  Please pray that he heals quickly from today’s procedure, and that there are no issues with excessive bleeding or trouble clotting due to his blood thinners.  I just received a call from his doctor a few minutes ago…she just wanted to check on him and make sure he was doing fine, and make sure Adam and I didn’t have any questions for her.  WHAT A BLESSING to have such great people like her to care for and check on the little man!

Here are a few pictures I took of Koalton with Kade and Adry a couple days ago to mark one month of his amazing life.

Our prayer as we settle into "normal" life is this:

Ascribe to the LORD the glory due His name; worship the LORD in the splendor of His holiness.

Psalm 29:2

We long for God to be glorified in our lives daily...that we would continually seek Him and His holiness as we press on through this time.  What an amazing, loving God we serve. We are so blessed!

6.1.11

I apologize that it’s been a bit since I’ve updated.  Things are actually going VERY well for little Koalton, and we are getting adjusted to life at home with THREE kiddos THREE and under!

Koal had a follow-up blood draw last week that looked great, and a quick visit to the pediatrician for a weight check and some quality time in the basement stairwell of the medical office (nothin’ like getting caught in a tornado warning on your first car ride excluding the trip home from the hospital! HA!). Koal’s weight was back up to 10 lbs, and we’re headed back for his ONE MONTH well check and weigh-in on Friday.  He’ll also have one more blood draw to check his bilirubin levels again, just to make sure they’re still trending in a positive direction.

Kade and Adry, especially, had a rough few days when we first arrived home.  No jealousy or ill-will toward the babe, but confusion for Ads about if we were REALLY staying (even going upstairs to run to the restroom could cause a bit of sadness!) and some “clingy-ness” due to so much time away. Within about two days they were both back to their normal, crazy selves, however, and have adjusted beautifully to having little Koal home.  Adry is the QUEEN of kisses – constantly wanting to kiss him on the head or cheek. Kade gives his fair share of kisses as well, but has much more fun rubbing Koal’s little head and saying, “I love you, baby Koalton!”  They are both so very sweet and seem to be adjusting VERY well. 

The little man himself seems to be enjoying home life also.  He’s still nursing and sleeping well.  We get up only once at night for half hour to 45 minutes and generally he goes right back to sleep! WHAT A BLESSING! He’s a champ at sleeping through the craziness (and noisiness!) of life with 2 toddlers as siblings as well, and we continue to be so thankful that he is finally home with us.

Grandma Katie (Kerry’s mom) is heading home to South Dakota tomorrow. We will miss her SO much, as it’s been such an AMAZING blessing to have her here to help in so many ways!  Koal will have to learn to nap in his pack’n’play or swing more, and poor Kade and Adry may be bored beyond belief!  Grammy Katie will probably sleep for a WEEK straight once she gets home! THANK YOU for everything, Mom…you are such a blessing to us.  We love you more than we can tell you!  

Please continue to pray for Koal’s health.  He seems to be doing so well, and we want him to stay healthy in general, as well as continue to thrive with his shunt in place.  We will see his cardiologist again in a couple weeks, and from there we will start the process of deciding what the next steps are for Koal and future surgeries.  When I think about the year ahead, I’m occasionally overwhelmed with what I know is in store (AND by what we DON’T yet know or understand!), but God is constantly reminding me of His goodness and showing me His love and grace in so many ways.  We’ve had a whirl-wind month since Koal was born, and we’ve seen God do so many AMAZING and INCREDIBLE things in our lives.  We are comforted and encouraged to know His plans for the next year of Koal’s life are just as amazing and incredible, no matter what’s to come.