April 2019

How can it be you are that same little boy?

You’ve grown so much since Christmas.

Your pants are too short now--like you’re ready to wade into the future.

Sometimes I imagine your little newborn self lying next to the boy that you are now.

Your chest was whole without a single scar, but the scars are what made you able to live.

You’ve started to ask me about those scars now. So far you care about the little ones,

But not the biggest.

“You have to give me medicine here?”

“Yes, buddy, I gave you some

Medicine there to help you be all better.” 

I wasn’t the first or main one, but it helps you to know 

I was involved. Just as it does in every area. Like this morning when I walked you to the table

Full of “friends” eating breakfast at school. Most of them are strangers, and your whole body knows it. But you smile through your fear, and only your hands twisting your shirt to death give you away. You’re just glad I’m standing there too...if only for a moment.

This week has been so sweet--so normal. Only the second such week we’ve had since you were that smaller boy at Christmas. I cherish every moment. Sometimes I feel like a fool to believe these moments will only increase as you grow older. But you opened your eyes that first morning when I stood by your crib and said your name, and the hope that began then has not and never will die.

-R.Vann

4/3/19

Update-- our pal Jackson

After having behavioral testing with a (wonderful) neuropsychologist, Jackson was formally diagnosed in May of this year with ADHD and Anxiety Disorder. His doctor firmly believes these problems are secondary to the things he suffered at and after birth, rather than genetic or some such other cause. Many who are reading this probably already know these things about Jackson, but I thought it could be helpful to post a general update for those friends of ours who haven't heard...just because we know you love him, and we so appreciate your prayers for our family. ADHD is, obviously, way over-diagnosed in our culture. It is shocking (after all we went through to get a diagnosis) how easily many children are diagnosed with this disorder, and I hope that it will be apparent we weren't just looking for a diagnosis to make us feel better about our unruly child. Jackson struggles in a very real way. He deals with almost constant regressions (think: potty trained one day and not at all the next; sleeping through the night one day and not the next, etc etc), difficulty concentrating (his attention span used to generally be about 30 seconds, but has improved sooo much over the last year), major inability to regulate his body--especially with anger and frustration, inability to deescalate after over-stimulation (often takes days to "recover"), difficulty with relationships, acting on impulse etc. On top of this he experiences real, life-limiting fear in many areas...but especially with separation from his mama. He already has trouble making sense of his thoughts and feelings, and adding fear on top is a volatile combination. By God's grace, we are surrounded with a host of family and friends (near and far) who have borne our burden in literally countless ways. Creative, considerate, self-sacrificing ways. Giving of themselves to give help to Jackson and our family. We are truly blessed. Jackson made incredible progress in the school year last year while attending the Early Learning Center. His speech improved exponentially. And he had the opportunity (though never easy for him) to separate from Mommy and Daddy four mornings every week. The neuropsychologist said he is "a poster child for early intervention." Praise the Lord, because we almost didn't put him in school last year. But these things are an ongoing battle for us, and one that we are still figuring out how to fight.

We are all weak, as human beings, but God has given Mason and I (and our whole extended family) the privilege of caring for one who is weaker than many and who, in turn, makes us weaker than many. But we are learning it is a gift to be weak. Because His grace is truly sufficient, and His power has never been more evident in carrying us where we can't walk, and bringing us on one day at a time. One fall morning when I dropped Jackson off at school, I literally fled the building as fast as I could without making a scene. His screams from my leaving were audible until I got through the last door, and my heart felt like 10,000 broken pieces. I cried to God in the car as I drove away--"God, my heart, my heart!" But He had already given me the answer I needed in my reading that morning, and it felt then like a firm, warm embrace. "As one whom his mother comforts, so I will comfort you." Isaiah 66:13 That has been the verse of the last year. Jackson needs me more than most children need their mother, and I adore him and want only to comfort and help him. And God is like that for me. I praise His name!

Our pal

For all of you who have stood with us through your love and prayers, I thought I might post a general update about our little friend...since it's been SO long! Overall, Jackson is thriving. God has given him three and a half years of life, and every day is a gift. He had a cardiology appointment in St. Louis a couple weeks back, and his little heart is holding strong. The pulmonary artery (one of the two switched at birth) continues to have narrowing, but is not severe enough to require intervention at this point. He also has a "leaky" pulmonary valve, so his doctor doesn't want to stretch the artery prematurely and cause further "leaking." He continues to take aspirin every day to help prevent clots in the stented area of his heart. His pacemaker is still working well, and we continue our monthly at-home pacemaker checks. J is a pro at these, and if he has a tummy ache asks me to "check his heart." Life is confusing for a little buddy! His pacemaker will have to be replaced probably in about 3 years when the battery begins to get low. Because of his previous pacemaker infection, and their inability to follow protocol in replacing the entire pacemaker (for various physical reasons), Jackson continues on preventative antibiotics twice daily. These have done a real number on his stomach, and his little GI system has been pretty miserable the last few months. I had tried unsuccessfully in the past to get him to take probiotic gummies, but recently found some packets that dissolve in liquid. These have helped a lot, but we look forward to when the new pacemaker can go in and the antibiotics can stop. Jackson wore custom made orthotics in his shoes for close to two years (a huge pain and nightmare...extremely difficult to get tweaked just so--to support his feet and ankles in proper alignment without causing blisters on his big toes), then a second opinion from an orthopedic surgeon caused us to ditch the orthotics last October. However, his foot alignment is very off, he doesn't seem to be developing arches, and a new recommendation from a new neurologist was to retry...so those are ordered and on their way, and we shall see how it goes. We pray they can be hugely successful and just what his little feet need.

But the biggest, most difficult obstacles in Jackson's life have related to behaviors. Almost as soon as he began to really be alert and interactive we noticed some behaviors that seemed not quite right. Hurting himself when frustrated, inability to de-escalate when upset even after a prolonged time, extreme agitation when small things go wrong, extremely picky eating, inability to tolerate certain sounds or places, inability to sleep through the night....etc, etc, etc We have asked other parents, asked our pediatrician, asked his developmental doctor, googled, prayed, and cried, and cried, and struggled, and prayed some more. By God's grace it seems we are finally where we need to be. At Jackson's last cardiology appointment I vaguely told our doctor about some of these symptoms, when she asked "how is he doing otherwise?" She mentioned a cardiac neurodevelopmental team at Children's Hospital, and asked if we would be interested. YES. I think I counted seven healthcare professionals who came in the room at various times when we went for his appointment last week. They were all caring, compassionate, and competent. Somehow---how???--we met with a neurologist for the FIRST time since Jackson's birth/hospitalization. He listened to my descriptions and explained that Jackson's cerebellum had significant damage at birth, and that behaviors are very closely tied in with the cerebellum. He said these behaviors are not all surprising and even to be expected in light of this. I suppose to a parent who has never thought in these terms that would be very alarming, but if I hadn't had three kids on my lap I think I could've hugged him. To have someone else--a doctor--affirm that what you have thought and felt is right on track... To know you haven't just been wimping out (all kids are hard in one way or another, right?). To finally feel heard. It's indescribable. He feels that diagnoses would benefit Jackson at this point in time. This would give us, his teachers at preschool, his other doctors all the ability to move forward in getting him the help he needs. So, God-willing, in the next weeks Jackson will have in depth testing with two different doctors as well as with an occupational therapist (to specifically look for sensory issues). We're not sure what they'll find, but appreciate your prayers that God would give them wisdom. We know diagnoses doesn't equal fact--behaviors, in particular, can fluctuate and doctors are only human. But we wholeheartedly want any and all help we can get for our buddy, and feel confident that God will give so much grace for him to lead a very full and happy life. I feel extremely humbled by the resources God has put in our lives. To even be able to have him be seen at Children's. It's just pure grace.

So in closing...Jackson IS thriving. We love him so much it makes our hearts hurt. He is going to preschool four mornings a week, learning tons of new words and phrases, and as Bethan says, "Getting way too grown up!" But if you think of us, would pray for us? We want to be good, God-honoring parents to our children. We want to give them the best chances at success in life, and strong foundations for the future. These have been extremely trying days. Long and lonely in many ways--simply by nature of the difficulties Jackson faces. But God. God made him exactly as he is, spared his life in a miraculous way, and spared him from "severe cerebral palsy." Because of who He is we are full of hope for the future.

THANK YOU for loving us so well,
Rachel for the Vanns

(After Jackson's appointments last week, we headed to the zoo. Another way Jackson has been blessed is in having the sweetest and most patient older siblings. What would I do without these two??)

Congenital Heart Disease Awareness Week 2018

Congenital Heart Disease Awareness Week 2018 #mypaljacks #miraclebaby #mightyoakesheartfoundation #bemighty #CHDawareness #1in100

Gratitude is key

The days shortly after Jackson's open heart surgery were some of the hardest of our lives. As I understand it, he had fluid collecting around his lungs, but not enough to be detected yet. He was also fighting addiction to one drug, and continuing to heal from major surgery. Up to this point he had had moments or hours of discomfort with procedures and what not, but his little body was fighting so hard and he was generally sleepy or sedated. Now suddenly he was awake and visibly suffering. He had regained enough strength to breathe without a ventilator, and his shrill cry was like a distress signal ringing in our heads and hearts. From what I remember Mason and I didn't talk very much during this time. The pain was too great. Words were empty and inadequate, and the tension was silencing. Shortly after Jackson was born I had remembered a "thankfulness board" made by someone who was suffering. I decided to implement something similar and had hung a string in his window that we pinned little cards onto listing things we were thankful for. It had hung silently during this trying time until one afternoon I stepped back in to our room and noticed a card had been added. I remember walking over to read it and breaking down when I saw what it said. Mason had written, "I am thankful Jackson is strong enough to cry." As soon as I read it I could see it was true. Jackson shouldn't have even been alive to cry. And before this time he had been so weak he couldn't cry. That torturing, heart breaking cry was the sound of grace.
Are you hurting today? Whether it be in a big or small way? Life-altering devastation or just daily annoyances and trials? Oh dear hurting heart--we do understand. But I would encourage you to trust God enough to thank Him. Even for the things you don't understand. Especially for the things you don't understand. I think you will find it to be an outstretched hand pulling you back from the black edge of despair.

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.