(Original appeared April 25, 2016)

Sorry, I couldn’t resist a good pun. And since I “ghostwrite” under Deb’s user name, I did actually get her permission for that journal title.
We rejoice that Jacob woke up this morning and we were able to visit with him. We do not take anything for granted anymore. He had a good night, particularly due to some serious urine output. We hope that he continues to release fluids because the fluid build up over the last few days caused such swelling. I think he looked better this morning already. I had mentioned earlier that these health issues tend to be like pendulum swings; any adjustment could cause an overreaction. Or it may be like the game “whack-a-mole”; just as you fix one thing, another problem could arise. Now that his kidneys are finally kicking in again, we need to be concerned that they will over-produce that that they will flush his system of the good stuff. So far, things look good though.
His liver is still struggling to process things, and so they will continue the meds for that.His blood sugar is low again, so they give him “sugar shots” (we thought he might prefer one of grandma’s cookies instead). We should have an update on his lungs again later today. He tolerated his blood transfusion well yesterday, along with the addition of the new I-V lines. While I hated to see those lines go in, I know that he’ll be much more comfortable going forward each time they need to draw blood for a test, or add this or that. They can simply access those lines and so the less pokes and sticks, the better.
Deb, Addison and I took some time last night to have a wonderful dinner with Deb’s family. Deb’s sister is getting married, and we are so happy for her and her soon-to-be husband. It was nice to take a bit of a break and share some good times.
We have also been so very blessed by the outpouring of love, gifts, prayers, encouragement, hugs, and shared tears from all of you. We may sound like a broken record (for the youngsters in the audience, ask your folks what that means), but all of that gives us such a boost. We couldn’t do all of this without each of you. We also give thanks in particular to our parents for being such rocks for us. They have steadied the boat for us at home, and with arranging food, visits, care, and so much more.
Finally, I’ve attached an older photo of the moment I was able to put both hands on J-dub for a while. What an enjoyable experience. He was pretty fidgety (notice the heart rate of 207), and I hope that I was able to calm him down a bit. You’ll notice that the lights in the room are off, they have the curtain drawn to limit light from the hallway, and they have a blanket (from ProjectLinus.org) over top to give some shade. All of this helps minimize the light and stimulation. Again, so many small touches that we’re thankful for. -R

(Original appeared April 24, 2016)

Jacob was visited by a respiratory therapist who performed an interesting chest therapy in which a small vibrating pad is placed on his chest and oscillates at a high rate. It is supposed to help break up the gunk in his lungs. Apparently when he received this treatment yesterday he did not like it. So she asked if I would hold his hand this time. I jumped at the chance. He not only endured it but seemed to remain calm and comforted. Let’s just say we had a moment.

Also, I don’t want to make a habit of talking publicly about my children’s bathroom habits but I will mentioned that… his kidneys showed some evidence of regaining their function. We are very thankful for that and hope that continues and that the fluid build up will drain over night. -R

(Original appeared April 24, 2016)

Jacob needed yet another blood transfusion today. Not desired but necessary. Also his kidneys are not producing urine. They tried to gently push the process by giving him extra fluids, but all that has done is caused retention. His neck is quite swollen now. They’ve cut down on fluids a bit and instead are trying to kick start things with meds. Hopefully he will wet a diaper sometime very soon.
We are concerned that his brain clotting may cause some hyrdroencephalus (water on the brain) and that there are already some indications of that. They will be taking measurements of his head circumference to detect swelling plus take images each Friday. Unfortunately he is too small to do anything surgical to relieve or fix the issue if the issue persists.
His chest xray (lungs) again looked decent. They’ve been able to wean him a bit on the ventilator and he tolerates it well. He did have a few low O2 moments which could be associated with either his fluid retention or feedings. His blood pressure also dropped and so they’ve run an arterial line (a needle into his calf/ankle) that allows easier blood pressure testing. He took it like a champ.
So many issues and so many challenges and so many solutions to manage. I am amazed at the God-given skills of these nurses and doctors and pray for them constantly.
We took time to join our friends at worship service this morning. What an invigorating thing. Today’s message was “Made for just such a time as this”, using the story of Esther as the illustration (Esther 4:14). The message certainly applied to our situation, and hit home. I recommend reading that story and considering how it applies to your situation. What are we going to do with our opportunity?

(Original appeared April 23, 2016)

The good news: His chest xray showed much improvement in his lungs. Things are clearing due to the treatments. The odd thing is that his oxygen levels are not the best and so we are still trying to find that sweet spot with the vent.

The pretty good news: his heart echo showed improvement with his PDA (the “hole” in his heart) and that it’s closing up, but not yet closed. We will continue to monitor it. They seem optimistic that it will close the rest of the way over time.

The bad news: While his head ultrasound did not indicate any new bleeding in his brain, it did show that the existing blood is not being reabsorbed as we would like. They will scan him again next week and if it does not improve they may have do some procedures. The longer it fails to be reabsorbed the more likely the clots and more likely brain tissue damage could occur.

Deb and I are taken aback by the public prayers for our family AND by stories of your private prayers too. Thank you!

(Original appeared April 23, 2016)

I have heard that a common thread among happy and successful people (as far as careers go) is that they find something that causes them to bound out of bed early in the morning. Enjoyment feeds passion, and that passion inspires one to do extraordinary things, such as leap up in the morning ready to go!
I felt that way this morning. My alarm, set at 5:30 am didn’t even ring off. I was already up 10 minutes before that, yes on a Saturday morning, excited to see my little guy in NICU and to then carry on to a family ministry seminar for the day. These two things are intertwined, and touch my heart.
As I sit here in the dark hospital room, I gaze at Jacob fully at rest, receiving his morning feeding. This is an indescribable blessing – regardless of the early hour.

(Original appeared April 22, 2016)

The chest xray this morning was not the best (they said it’s his worst xray thus far). It showed more and more junk (looks like fog, and indicates fluid or possibly some scar tissue). So they are trying another treatment to help open his airways. So far, his oxygen levels have been better today than yesterday which is good news. He has also settled down and has been sleeping well this afternoon. This is very welcomed due to his restlessness yesterday coupled with the battery of tests he went through this morning.

We don’t have results back on the head and heart scans but I’ll report as soon as we do. However, he isn’t showing signs of swelling in his head, and the heart murmur hasn’t been heard for two days – both good things. And his heart rate has dropped to a more tolerable level (from over 200 bpm to about 180 bpm).

He’s tolerating the NAVA ventilator fairly well. I think they’ve got it dialed in better lately so he’s not fighting with it as much. He’s taking most of the breaths himself. The least amount of ventilator assistance, the better it is for his lungs. The problem is that his lungs just can’t do it all themselves yet so it’s quite the Catch 22.

He seems to like being laid on his side now. He quiets right down and gets comfy. Tonight should be a good restful sleepy night for him.

(Original appeared April 21, 2016)

Jacob received several meds to help.clear up his lungs and to help liver function today. We hope those work well. For now, they’ve had to increase his oxygen quite a bit. All day he’s been very restless, twitching often. We are not sure why. We’ve tried rolling him to his side for comfort, placing our hands on him to calm him down, withheld his regular dose of caffeine, changing diapers, and several other adjustments. Nothing works. We hope it’s just his immature central nervous system developing. The twitches we see are normal in utero, but perhaps not this frequent and steady.
Also, due to the blood transfusion, he couldn’t be fed all day. I’m sure he was starving which doesn’t help.
He will be run through a bunch of tests tomorrow. But his feedings will resume at least.
They took his weight tonight: 1lb 4 oz, down 3 oz. This is expected due to his loss of fluid shortly after birth. He’s actually recovered pretty nicely and we hope to have him at birth weight next week. Yet with his meds and the fact that his gut isn’t fully formed, we need to keep the amount of food to a minimum. He won’t belly up to the Golden Corral anytime soon.
During his bath, the nurse noticed that he had opened one of his eyes for the first time. She gently rubbed the other one and it opened too! We can’t wait to see him open them ourselves.

Our prayer for him tonight is that he gets good rest. He will need it for his big day of testing tomorrow.

I’ll leave you with this. I found myself taking a break and staring out the hospital lobby window. Just staring and trying to think. Or not think. Wondering why we had to be here. What’s the plan. What’s the purpose. What’s the next step. My distant gaze came to a fountain in a pond across the campus. The fountain spewed a large stream of water high into the air. Powerful, the fountain pushes several gallons upward 30 feet into the air, only to be caught by the wind. The wind disapated the water in a finer mist and carried each drop a long distance from the fountain. I watched as the mist slowly sank to the pond below.

I likened our situation to this scene. A water drop is drawn up fast from one part of the pond, launched into the air, to land gently elsewhere yet in the same pond. We didn’t ask to ask to be shot into this position. It’s been uncomfortable and we would have very much preferred to stay in our little quiet corner of the pond. Now, we drift at the mercy of the wind, to fall gently down to another life. We are meant for this, despite the discomfort and stress. We take solace in the fact that the wind, God’s providence, will guide us through. I’m not sure where we will land, but we know that it’ll still be in His pond. And that’s good enough for us.

(Original appeared April 21, 2016)

No, not the Matlock version of trials. The trials that we face which lead us to fully rely on God’s grace and love for us.
Yesterday, this passage was front and center on my phone app “widget”:
“Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. (1 Peter 1:3-7)
I noted words like guarded, tested, precious, and praise. Why do we suffer these trials? Because ultimately, they bring praise and honor to God. Think of what He has done through Jacob already. How many of us may have slacked in our prayer life until the last 10 days happened? Have you hugged and loved on your own children more in the last 10 days than you did before? I’ll add that we’ve never felt love and friendship like we have in the last 10 days! We praise him for all of this even during these rough times.
Jacob has been struggling a tad but remains stable. He will need a 3rd blood transfusion today. His lungs were a bit more cloudy this morning and he’s not been able to stay real steady on oxygen. But overall things remain stable and we are glad for that. Tomorrow he gets follow up head and heart ultrasounds. We pray that both show positive progress. -R

(Original appeared April 20, 2016)

Rounds are over and it was all “good” news (at least under all of the circumstances). Kidney function numbers are back in line which was a relief. And soon they will increase his feeding frequency.

He is still so restless so Deb is changing his diaper and placed her calming hand across his legs. Nothing like a mom’s touch and a dry bum.

(Original appeared April 20, 2016)

I’ll try to move through this quickly and fill in details later.

1. His heart PDA is still there but it is mild to moderate. In fact, it apparently closes most of the time so it’s not detected. He will have another round of meds that should seal the deal.
2. His chest x-rays continue to show that his lungs are struggling. We hope with time, and when the PDA is fixed, that this will get better. The doc said that his clinical signs are all solid despite the lung issue.
3. Daddy got to swab his mouth with milk! W00t! What a rush. He clamped down on that swab like it was his job. I hated for the experience to end.
4. He tried his first pacifier. Yes they make them that small. He seemed to like it so we may try it later. The nurse even sent us home with a 2nd pacifier so big sis could see how small it is.

We should know more after the afternoon rounds.