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If you can believe it, Henry is 5 months old. Of course, developmentally (i.e. “corrected age”) he is a little over 2 months. But we don’t like to skimp – he has very much lived all 5 months. We are proud of this kid.
Jude next to him, is turning 2 in August. He is a good brother – day by day he gets more acclimated to the fact that he is not the center of orbit. He loves “baby” (thankfully baby and Henry rhyme… so the transition should be a smooth one). We are proud of him too.
Henry is growing well. He continues to get check check-ups and so far all have been positive. He smiles a ton. He has a very gentle and happy spirit. It is almost as if he is resting for the first time in his short little life.
Your continued prayer is very much appreciated and needed. It has been a challenging season, but through it, Christ has been our comfort, our treasure, our hope, our stay. Henry’s health is not our savior. Jesus is. And so we are receiving God’s mercy to Henry as it is — a gift. We are thankful.
We will keep you posted,
Joe & Josie
Here is a capture of Henry’s joy – rarely are we able to capture him mid-guffaw. We actually get a ton of smiles from him (and they are not “gas smiles”).
Henry is now over 10 pounds, and the clinicians and doctors are pleased with his development. He is off of oxygen. He is not taking any medicine. He is sleeping really well. We are thankful.
We are still very cautious, per doctors orders, to take him to public places. He can’t really be around people. Though he looks vigorous on the outside – he is still quite fragile inside. A big cold or RSV would be terrible. Please pray against this.
Thank you for your prayers and support. We will continue to update this blog. If there is a span of silence, don’t think the worst… it means that we are caught up in “normal” new-baby craziness. Again – grateful for your prayers.
Joe & Josie
Josie and I are returning to the closest semblance of normalcy we can muster. Jude is home-home, dinners are not defrosted or on-the-run (for the most part), and Henry is starting to show (favorable) sleeping patterns. We just recently remembered that we are church planting. We are going on walks. Jude is saying “ma-ma” & “da-da” with reckless abandon.
I thought I would share the latest on Henry’s health – so you can praise God in your prayers, and continue to ask his protection over Henry. Henry recently had a cardiology follow-up (see sci-fi photo above). Some of you know that Henry was diagnosed very early with two congenital heart defects: a moderate Ventricular Septal Defect (VSD), and a *slight* coarctation of the aorta. Doctors said surgery was a sure thing – but monitored heart growth while he was in the NICU.
Back to his cardiology check-up. The cardiologist was very pleased to renege on his promise of surgery. It appears the VSD has become so very minor, that surgery will not be required. And the coarctation is no longer a concern. There is a slight murmur still – but it is not a major concern. We don’t need to describe to you how humbling and relieving this is to us. God’s abundant mercy to Henry feels awkward – no other way to describe it. We are thanking Jesus.
Henry’s next check-up (in a week) relates to his lung disease, BPD – and it is then that he could be released from his oxygen. Please pray for this. What a relief this would be to us (and Henry!).
Also, please pray that Henry would develop well: sight, muscle control, alertness. We are so far pleased with his development, but we still need to be in vigilant prayer about this.
Love you all,
Today we took Henry to the BPD clinic (for his lung disease), and they decided to stop his medications, including his diuretic. That means that Henry is only receiving oxygen. This is good progress, but please be in prayer that his body withstands the transition. Also, we are only to use the apnea monitor for night time. Less cords during the day. Such a relief.
Henry weighs 8lb 7oz at the moment, which is rather amazing (Jude was born around this weight full term). We are thankful that he is growing and feeding well. Please continue to pray.
We will keep you all updated.
Joe & Josie
Thanks for the prayers!
Our homecare nurse came by today as well, and she weighed Henry at 7 lbs 6 oz. Shocking to her as much as us. He is gaining weight really well. In some ways, gaining weight like this is not ideal – we hope that the weight is not fluid, but is “real” gain.
We will keep you posted so you know how to pray.
Yes – that is natural sunlight on his face. For Henry, the first of its kind. On Saturday around 2pm, Henry left his NICU corner to finally come home; 75 days later. It was a quiet affair.
Now that Henry is home, we have met a different baby. The hospital does a great job keeping preemies alive – but lacks the positive care that only a home can provide. Henry is soaking in his crib, his parents’ touch, the quiet, the soft light. He does not apparently miss the beeps, alarms, crying neighbors, & rounding doctors. So Henry is much more alive. Much more alert. And much happier.
His parents are relieved. Though we are entering a challenging new chapter in Henry’s life, it is a new chapter. So we are thankful. You can still pray for us. God seems to give new parents a reserve of adrenaline when they have new-borns. If I remember Jude’s birth correctly, this reserve lasts about 3 months. However, as you can well imagine, this reserve has already been well depleted! So we are tired. But, as one pastor says before he preaches: with the help of the Holy Spirit and Red Bull we will get through this.
We have met many dear people during our NICU stay. We cry when we think about our primary nurses. They took to our boy, when their job understandably demands hard emotional boundaries against this. We are thankful to Jesus for them. We met dear friends with a baby of their own in the NICU – our shared experiences have kept us sane & given us hope, as well as the freedom to be sad.
As I shared months ago, I have been particularly comforted by the truth of Psalm 41. God is our divine doctor – yes. But he is also our divine nurse who changes our bed & cares for us when weak. 75 days later I can say that Josie and I were as much recipients of this divine care as Henry.
Many of you have mentioned that our faith has been inspirational to you during this trying season. We are thankful for this, and can relate. I know that part of me crumbles when I see others crumble. But I would also like to make clear that it was not our faith that made us strong – it was the object of our faith: Jesus. I strongly believe that faith itself is a gift of God (“For by grace you have been saved through faith. And this is not your own doing; it is the gift of God” – Eph 2:8); and I can honestly say that we have made it through this NICU experience because of God’s relentless mercy to us; not our relentless grip on Him, but His relentless grip on us. In this way, God is the hero in Henry’s story.
The promise of resurrection and God’s final restoration of all things. The conviction that Jesus alone is the happy ending to our hopes, dreams, aspirations, and goals for Henry. The truth that Jesus weeps with the hurting. The promise that suffering is not for naught. The integrity of these truths are proven in trials like this. Yes, our faith in these things have been strengthened these past few months – but this too was a gift to us from God. Again, God is the hero.
We will continue to post updates on this blog so you can continue to take part in Henry’s story through prayer. He has a long road ahead of checkups and therapy. But he is home. Thank you Jesus, he is home.
Thank you everyone for your encouragement and prayer. This too was a gift from God.
Joe & Josie
It is hard to believe that Henry was born on January 30th. It is already raining like Spring outside.
Thanks for your prayers concerning Henry’s feeding struggles. Since I have last posted, Henry has been back and forth. He had one great day of 9 full feeds in a row, then slipped back in fatigue. But the following day he jumped back into full feeds. We were braced for a back and forth until his full gestation (April 25).
However, it appears that Henry is doing really well with his feeds for the past few days. They took the feeding tube out – to “test” him. So far it appears he is passing the test. (!) – that is the symbol of cautious joy. There is talk of discharge… dangerous talk of discharge.
Henry is still on small oxygen, but tomorrow they give him a day to test without it. This could be a specific prayer of yours – we covet your prayers.
We will keep you posted in these days. We are eager, but cautious; energized at the thought of his trip home; but fatigued. You know how Paul put it: those brittle and cracked, but not destroyed, vessels of clay. That’s us.
We will keep you posted.
Joe & Josie