2 years

Two years ago right now our buddy was in open heart surgery. He had to go on bipass not once but twice, and his risk of further brain bleeds was huge. He came out with a mended heart and no further brain bleeds 8 (or was it 9?) hours later. We're so thankful to God for our incredible surgeon, and for this precious life.

Lil buddy

Thank you again to all who prayed for Jackson this past week! He did unbelievably well with his overnight stay in the hospital. His only real complaint was that his hand was definitely "stuck" with all the IV tubing, tape, gauze, and IV protector on it. It was a really precious time of enjoying his life and snuggling with our buddy, as well as meeting up with several very special doctors and nurses. They hold such a place in our hearts! He has recovered wonderfully. He had an aversion to diaper changes for a couple of days (SO much pulling on and off of electrodes, dressings, IVs, etc), but has already moved on from that as well. If his little body continues to follow the same course we shouldn't have to do this again until he's four or five...wow! God is good.

(FaceTime with two of his favorite people)

(Running in the rooftop garden waiting on discharge papers. Guess he's not sore!)

(Headed home)

Done!

Jackson is all done! Buddy had an awful time before the cath with a bad reaction to the Versed they gave to help him relax. He was delirious and inconsolable. We were grateful to see him fall asleep from the anesthesia. The cath showed that though there is narrowing (in the pulmonic artery) it wasn't as advanced as the echocardiograms had estimated. They did attempt to balloon it, but it didn't accomplish much. They were able to successfully balloon his previously stented area (the inominant artery) allowing for much better blood flow in that area. The plan is to continue to monitor with external testing and repeat the cath in 2-3 years if all continues to be stable. Thank you so much for every prayer! We haven't seen him yet but should soon. He'll spend the night on the cardiac floor. Our cardiologist from Columbia was here and so kind and attentive. So grateful for every mercy. 

Cardiac cath

J had a full morning of pre-testing for his cardiac cath tomorrow. He made it through all the tests, but had a pretty rough time. We're praying for a great night of rest tonight, and for the Lord's help tomorrow in every detail! Thank you so much for any prayers...this is so minor compared to all he's been through, but we don't want to take anything for granted. It was so FUN to see a few of our doctors and nurses today! We couldn't be more grateful for them. 

We go in around eight in the morning, and they'll probably take him back about an hour or two later. It should take around 3 hours. 

Yes, ok...

After almost four straight hours of interaction at doctor visits yesterday afternoon, I was worn to a pulp and wondering how Jackson must feel. I told God through tears that this isn't the life I would've chosen for Jackson. He gently reminded me it actually WAS chosen for him...by God. A God who is all-knowing, all-seeing, and all-wise. Could there be a more comforting reality? To be able to rest in the fact that these hard circumstances (as easy as they are compared to what we once thought we were facing!) were hand picked for Jackson and for us with purpose and with limitless love. Yes, ok...even I would choose that.

Happy 2nd birthday!

Precious, precious boy...what can we even say? We are humbled by God's grace in sparing your life. We love you more than words can say. We celebrate your life today with overflowing joy. Happy birthday, Jackson Samuel!

"Oh give thanks to the Lord, call upon His name; make known His deeds among the peoples. Sing to Him, sing praises to Him; speak of all His wonders." Psalm 105:1-2

(Photos taken at a seconds' notice by the talented Alyssa Parr. Thank you!!)

"Wook, wook, wook!" (Translation: "Look, look, look!")

We often wondered, in those first days and weeks, if Jackson would ever be able to feel or respond to our affection. Now he is fiercely affectionate. To have this little face peering out the window at me when I get home from the grocery store is...beyond words. So sweet of Mase to capture this!

Cardiac Cath

Jackson is scheduled for his cardiac cath September 13. We're so thankful for advanced medical technology and great doctors and nurses. And there are several necks we're really ready to hug! We will have to be there Sunday for several hours of testing early Monday. Then procedure Tuesday the 13th with a probable overnight stay.

We learned that the reason J's procedure took so long to schedule was because his cardiologist from Columbia asked if he could be there for it. Wow--we are SO blessed.

23 months

Only a few more weeks till our miracle baby turns 2! We are still overwhelmed and overjoyed by this precious little life.
Just a quick update--we had a cardiology appointment a couple of weeks ago, and it was agreed upon by our current cardiologist and one of our previous docs from St. Louis that Jackson would benefit from a cardiac catheterization. This "going from the inside" will allow them to see what's actually going on in his heart, and is a much more accurate test versus the external "estimates" that the echocardiogram gives. We don't have a date yet, and this procedure has only minimal risks (especially compared to all he's already been through!), but nevertheless we would sure appreciate your prayers. For the first time in a long time the words "possible second open heart surgery" were mentioned at our last appointment. Though they've been mentioned before, he's doing SO well that it felt a bit like a punch in the stomach. They plan to attempt to treat his current pulmonic stenosis problem during the cath procedure. If it works, it could delay or prevent open heart surgery. So our prayer right now--that this procedure would be wildly successful. However, we won't despair if it doesn't turn out that way. It would just mean God has a bigger and better plan.

22 months

Where do the months go?? Love you, buddy! Your 2nd birthday will be here before we know it!

21 months

I'm a couple of weeks behind, but this little guy is now 21 months. I thought I would write a brief update since I haven't for a while. Overall Jackson is doing very, very well. He doesn't usually walk from room to room--he runs. :) He continues to be seen by a physical therapist once a month in our home. He seems to enjoy her visits, and she gives us lots of ideas of ways we can work with him throughout the month. A few weeks ago he was evaluated by a speech therapist and scored several months behind on his speech. She will begin seeing him next week on a biweekly schedule. He seems to us to occasionally be frustrated by his inability to communicate, so we're hoping and praying his speech will develop and "catch up". (I'll probably be eating my words on that last sentence before I know it!) He continues to take only two medications a day--aspirin and antibiotics. Jackson has had increased pressure in his pulmonary artery since his corrective heart surgery. This is considered normal after this procedure, because by nature of the surgery the artery must be stretched (we're talking really small vessel and really small stretch :)). The stretch leads to a narrowed vessel...which leads to increased pressure required to pass blood through. However, his pressures have always been higher than the new "high" following surgery. They were staying the same for about year following the surgery, but at our last visit had risen slightly. Our cardiologist said they are not at a critical level (as of February), but that he suggested cardiac catheterization (viewing the vessel from the inside) when Jackson is two to see what's causing this increased narrowing and how best to correct it. We will return to see him in August, and plan for this procedure to be scheduled shortly after at St. Louis Children's. I will update closer to the time, but we would sure appreciate your prayers for this. And really just your prayers that God would preserve and strengthen his body in every way. We continue to do monthly pacemaker checks on him at home and he tolerates these very well. His pacemaker continues to work wonderfully. He is 20 something pounds of concentrated personality and vivaciousness. Always on the move, always exploring, always in trouble, and just as cute as the day is long. Maybe cuter! Also, the funniest thing he's ever seen is me going down his baby slide as a joke. He laughed so hard he fell over. Haha!
 Thank you for praying for us! Aunt Lauren and cousin Madi took several of the pictures below...and I love them! I put the last picture in to show his sweet, fluffy growing hair. Another miracle! ;)

Nurse's Week

It didn't take us long, in our stay at St. Louis Children's Hospital, to realize the vital role of the nursing staff. In fact, when I was still in Columbia and Mason and Jackson were in St. Louis, one of the very first things I remember him telling me was, "He has a really great nurse." Truly--I think I could gush for an entire post about our nurses and not even slightly exaggerate. Dear nurses...I want you to know how much you helped us. You were quiet, calm, and confident. You were optimistic though realistic. You were knowledgeable without being pushy. You were a constant presence but let us feel like we were alone with Jackson. You pushed the doctors to let me hold him that first time. You were shocked at our tears when we were told Jackson would be severely disabled, saying, "You never know! He may do so well." You came in after you saw us pray with him one night and said, "I just want you to know I'm praying for him also." You made me chocolate candy for my birthday. You shared your hurt and your heart with us in the form of a little onesie passed on from a child who lost their fight. In short--you loved our son. What more could you do for us than that? I just want you to know this...we love you too. Thank you. Your sacrifices are recognized, appreciated, and accomplishing a world of good. Forgive us for not remembering all of your names! We will never forget your faces and your kindness.

20 months

Jackson is 20 months! And I'm wishing time would slow down...

19 months