(Original appeared May 8, 2016)

I am by no means as good at writing in this as Rob (BTW – thank you Rob for providing the status updates and your humor!). However, I (Deb) wanted to wish all of you mothers a blessed Mother’s Day! In my devotions this morning I was reminded that even Jesus took care of his own mother. I know he will continue hold and care for each of us mothers – even in our most trying of moments! If we keep our eyes fixed on Him we will make it through those valleys and hills of life! -D

(Original appeared May 8, 2016)

If you have been able to follow along with us and read even a few of these journal entries, you know by now that things have been quite the roller coaster ride for us. Deb put it another way: Hills & Valleys. And that’s perhaps more true that the amusement park ride analogy.

This weekend was not the best for our little pal. His blood pressure dropped to a pretty dangerous level. They were able to control it and raise it using a few different methods. One of those things includes increasing his dopamine, which has been used to help his kidneys function, but also helps with blood pressure. This it’s good that he was already hooked up with this, and it was merely tweaking a setting on his IV, the fact that he’s still on this med and will be for a while stalls his progress toward restarting his feedings and getting into Deb’s arms. This pressure drop comes after he had several full diapers (indicating his kidneys were functioning again). Perhaps he lost some fluid volume causing a drop in blood pressure. Perhaps it’s any one of 100 different other things.
His most recent weight is 1lb 15oz (almost 2 pounds!). He seems to be growing some, but we think much of this weight gain is simply fluid retention. His brain scan came back and suggests that the blood clots are still resolving and no further bleeds exist. His hydrocephalus (water-on-the-brain) hasn’t grown much if any either, which is good news. But the bad news is that he still has these issues, and likely damage is being done as we sit here. It pains us a parents that there isn’t a darn thing we can do about it. His recent heart echo showed that the PDA still exists. That could be contributing to his ups and downs with oxygen. We still wait to see if it will seal up on its own. It’s worrisome that it hasn’t yet, however. His chest x-ray this morning was still cloudy, so whatever is in his lungs isn’t resolving. Yet he’s done pretty well overall with oxygen levels. It’s just that he has more frequent dips and rises than before.

Monday, will be a big day for Jacob. They will re-scan his heart and brain, and will also view his liver. He has needed several platelet transfusions and a few blood transfusions lately. Not long after the transfusions take place, his blood tests come back low on both, and they just aren’t sure where all of that is going. It’s possible that it’s pooling in areas that it shouldn’t, hence the need for various scans. They may also try to place the PIC line one more time on Monday. It’s failed 3 times, and it is crucial to get that in. The doctor suggested that the remaining line into his umbilical cord may be the source of a recent infection. He would like it removed to 1) reduce that possible source and 2) test the line to confirm it either is or isn’t the source. However, removing that umbilical line requires some other line into his body to give meds, feedings, etc. We would also like to see him “graduate” to a PIC line since it is a longer term solution, and will allow Deb to hold him when the time is right.

These are simply more examples of the hills and valleys we endure every day. While we may be somewhat familiar with Isaiah’s famous words that were later proclaimed by John the Baptist, I admit I never looked beyond them. Follow me on this. Isaiah 40:3 says “A voice cries: ‘In the wilderness prepare the way of the Lord; make straight in the desert a highway for our God.” Deb and I kept reading through to verse 4 to find such comfort: “Every valley shall be lifted up, and every mountain and hill be made low; the uneven ground shall become level, and the rough places a plain.” Using my armchair, Monday morning theology, it certainly was easy to apply this verse to our situation. The thought of God our Father, through Christ, leveling our steep hills, and lifting up our valleys to help us through this rough time brings such comfort.

(Original appeared May 6, 2016)

I was able to get a photo of the moment I held a pacifier for Jacob the other night, which helped him with his poor oxygen levels. I thought I’d share that with you here. He loved it and wouldn’t let it go. Although I already mentioned this in my earlier post, I’m saying it again for posterity’s sake that my arm went numb holding that for so long. Jacob, if you ever get to read this in the future, remember. Arm. Numb. #FathersDayGift   -R

(Original appeared May 6, 2016)

This entry could go in several different directions with a title such as “Footprints”. You may be familiar with the famous poem about how God not only walks with us in life, but during the tough times actually carries us through.
Rather than get all mushy gushy with you, I’d like to present to you the photo here which shows Jacob’s foot prints placed upon his baptismal banner. Now, Deb and i consider this banner to be something just shy of sacred, especially under the circumstances of Jacob’s early days. This banner is lovingly and painstaking made by a member or members of our church for each and every individual baptized there. The banner Addison received on her baptismal birthday hangs in her room to this day. So, we hesitated doing anything that might soil Jacob’s banner in any way. Since the day it was given to us, we hung it in our room as a reminder that while we cannot be with him at the hospital 24/7, he is still in our hearts.
Today, the nurse contacted Deb and informed her of the good news that we’d get to take Jacob’s foot prints and asked if we had something special to put them on. Sure, a card or paper would work. But we wanted something of good solid material and something lasting – a reminder of where he’s been and where he’s going. Boom: baptismal banner. So while this is quite unconventional, the fact that Jacob has completely bucked “convention” his whole life just seemed to fit the situation. I will add that each of the letters on the banner are no more than 2 inches long so that may help give you perspective of how tiny his feet still are.

Update: Jacob’s chest x-rays have been very cloudy recently, indicating inflammation, congestion, or scaring. Yet, his O2 levels have been getting better. It’s almost comical now to see how test after test suggests one thing, but the reality presents something opposite, good or bad. So, we just roll with it and continue to fully rely on God and His plan.

(Original appeared May 5, 2016)

“For you, O Lord , have made me glad by your work; at the works of your hands I sing for joy.” Psalms 92:4
No offense to the psalmist, but today I would like to add an exclamation point to that verse! Jacob’s kidney output has been wonderful last night and this morning – so much so that they may have to consider reducing the meds so he doesn’t loose too many electrolytes. We can’t pinpoint the exact cause of the sudden output (could be a host of factors since we’ve changed so many variables lately). Suffice to say that we are grateful for the prayers and the nursing care. I am trying hard to temper the excitement simply because this is only the beginning of a long course. We saw this kind of urine output before – before it stopped about 10 days ago. So we are cautiously optimistic.
He will undergo a heart echo (ultrasound) to check on his PDA. We expect it to still be there since they continue to hear a murmur but we hope it has not enlarged and instead shows signs of closing up.
Tomorrow he will receive his weekly brain ultrasound to check for swelling and whether the blood clots are being resolved. Currently we are in “wait and see” mode with that. He will not be ready for a surgical fix to the swelling u til he is much bigger. We continue to pray that the blood clots have not caused significant brain damage and only time will tell if Jacob will struggle with any developmental issues.
Yet, we rejoice in the moment and always. -R
PS: I have chosen not to mention any individual gifts and acts of kindness in this blog so far, simply because to do justice to ALL the gifts, etc, would require me to write a separate blog just on that topic! But I do want to make special mention about the 3rd grade class at Addison’s school. I should mention that Addison is in 4th grade. Yet her younger peers, led by their caring teacher, prepared the most wonderful individual handmade cards for our family. The artwork was beautiful but the messages of goodwill, prayers, and thoughtfulness invoked emotion like you wouldn’t believe. The hopes and dreams of little ones are the most precious. Thank you, Third Graders! These cards follow the equally wonderful cards made recently by Addison’s friends in her own 4th grade. Very uplifting to her, and Deb and I.

(Original appeared on May 4, 2016)

As much as I hesitate talking about my child’s bodily functions in public, I still want to report that his urine output has been rather decent just since my last journal entry. Now we just hope for consistency/frequency.
Also, he is doing better with his oxygen levels now. They’ve been able to back off the O2 concentration quite a bit which is greally news. As I sit here at his bedside, he is currently still “too high” for once. Its possible they may have to wean him down a bit more. Prayers answered?

(Original appeared May 4, 2016)

I’m going to start with today’s Bible verse. “Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths.” Prov 3:5-6. And then I’m going to double down with another powerful passage. “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 1:6-7.
I began with those two verses because they are getting us through the latest news about Jacob’s condition. We had a lengthy conversation with the nurse practitioner and the doctor to get the latest scoop. They put it bluntly that Jacob is “sick”. They don’t know exactly why. But all indications is that he has some sort of inflammation somewhere. The likely cause is infection and the likely location is the lungs. The latest blood cultures did not reveal any infection, and they will try to get a culture from some of the gunk they clear out regularly from his airway tube. If they can pinpoint and infection, and what is causing it, they can prescribe antibiotics specific to that. For now, he will go back on the broad spectrum antibiotic. They’d also like to rule out pneumonia. One of the issues, however, is that the more powerful antibiotics negatively impact the kidneys, and so he won’t be able to take those.
Whatever is ailing him is likely causing the issues with both his lungs and kidneys. We spoke at length with the doctor about his kidney function. He mentioned that they should be working, at least enough to produce urine flow on a more regular basis. For now, they just aren’t. He was encouraged by the fact that at least a little bit of pee is being produced, and that we’re not seeing zero output. If we saw no output, that would be very serious in a just a few days. As it is now, the minimal output gives us a bit of hope.
His oxygen levels continue to be stable, but not at a good level (if that makes sense). He’s at about 86% oxygen (normal air is 21%) and that is sustaining him so far. If his lung condition deteriorates, they may try a different vent altogether called an “oscillator”. This differs from his current ventilator in that while the vent will inflate and deflate his lungs, simulating breathing, the oscillator will “vibrate” the oxygen at a very high pace. Apparently, this allows for gasses in the airway to be diffused rapidly and efficiently. The staff mentioned, however, that this is uncomfortable and if they went this route, they’d have to sedate Jacob.
Last Thursday, you read about the process through which Deb and I had to have our perceptions, selfish hopes, plans, and stubbornness wrenched from us, and replaced with peace, understanding, true hope, and faith. This process apparently was not complete (it’s never “complete”, right?) back then, and I found this out today while listening to the report. I discovered that I had once again begun to lean on my own understanding, and hope for what I wanted. Despite having just 6 days ago went through a “refinement”, I found myself still clinging on to things that get in my way of putting my utmost faith in Him. I can almost hear Him now, saying to Deb and I: “Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9. And so, back into the fire we go. Our hope is that, by the end of this, He will have shaped us (and you?) into shining, pure examples of His love and Grace. For now, though, we pray that the inflammation subsides, that nothing serious comes of it, and that his brain, lungs, liver and kidney functions are strong and see him through to tomorrow, and then his 4 week birthday on Saturday, and then the day he is released to us to go home. – R

(Original appeared May 3, 2016)

We hope you all don’t get too bored with all the technical jargon and medical updates. We are learning much more about neonatal medicine than we ever would have expected!
Jacob’s urine output is still low. They ran a catheter and nothing really happened. This suggests to me that the issue is at the kidney level, and not on down the “line” so to speak. They’ve decided to keep the meds going, but at a different dosage rate. They will actually ramp it back up. While this means he won’t go back to breast milk any time soon, we’re not yet giving up on kick-starting those kidneys. We really hope this new approach works, because he doesn’t appear that he can hold any more fluids. It’s difficult to describe just how puffy he looks now. Even his little fingers are so swollen that he can’t grip very well at the moment.
His recent blood work suggested an inflammation of some kind. They are running a follow up blood test to try to pinpoint why, but the initial thought is some sort of infection. They will resume antibiotics and are trying to figure out which one to use.
They also tried to reconfigure his vent settings a bit to work with the air leak around the tube in his throat. Right now, he has the smallest tube available. But he’s growing and his throat is expanding a bit, which causes leaks around the tube. They could insert a new, larger tube. However, the next size up is quite large – probably still too large for him. If they insert the larger tube, they risk puncturing his airway, etc. So we’ve tried to stick with this smaller tube for as long as we can. Yet, the leak is bad enough that he’s not getting all of the air/oxygen that’s being pumped in. In my last post, I mentioned that we tried a pacifier which had the positive side effect of helping to seal off that leak a bit which then caused his O2 levels to rise. This is an indication that a larger tube would work if they could safely insert it.
Other than those things, all seems to be as well as can be expected. It’s so nice to see nurses from down the hallway peek in on Jacob from time to time even though they don’t have him as their patient that day. I think he’s made a few girlfriends over these last 3 weeks. Stud muffin.

(Original appeared May 2, 2016)

I arrived at the hospital this evening to find that Jacob had his ventilator set at 90% O2 – his highest setting so far. Even at this level, his blood oxygen saturation (called “Sats” in the medical biz) was all over the place and mostly on the low end. The nurse turned him over and checked him, and tried a few things. As she was suctioning his mouth, she noticed that he latched on to the suction tube and wouldn’t let go. We discussed that he seemed to like his pacifier the other day. So, she gave it a shot tonight. He took right to it, and immediately his oxygen levels went up. They rose so much and stayed steady that we dropped the vent setting by 2%. So, either he really REALLY liked the pacifier, or the pacifier helped block some of the air leakage that is taking place lately around his ventilation tube. Either way, we liked the result. And hey, I have to say I enjoyed the experience of holding that pacifier in his mouth for 30 minutes straight (my arm went numb but I didn’t care). The bummer is that he still had no kidney output. His ultrasound results came back fine, so there’s no blockage. They just haven’t started up yet. And so we wait. The really sad thing is that the fluid retention has him blown up like a little water balloon. We know it has to be uncomfortable for him. They will be weaning him off the kidney meds soon which means he may be able to go back on breast milk sooner than later. Perhaps that will spur things on.
I also wanted to let all of you know that Deb and I read each and every one of the comments, and even check out the “likes”. We love the feedback, and hearing about how J-Dub’s journey has touched you and your family.  We especially are touched by the stories of how your families are praying more consistently and fervently together. I think that somehow the prayers of a child touch God’s heart just *that* much more. We hope that this experience as a family together is as profound for you as it is for us. Thank you. -R

(Original appeared May 2, 2016)

I believe that Deb and I now have a new appreciation for all sorts of things compared to how we viewed things before April 9. Some highlights might be: discussions about Right-to-Life; running the race and fighting the fight; being a parent/spouse; time management; life priorities; and so on. For me (Rob), I used to look at these things as various plates I had to keep spinning, like you might see in a talent show. Perhaps another way to look at it would be bags that I would carry. Small priority items were small bags, that might fit into a pocket. Higher priorities would be reflected in a larger, heavier bag slung over a shoulder. As more things came at me in life, the baggage added up. Heavier, and more difficult to handle, this baggage would hinder my walk with God and my ability to do His will for me. I confess (and I don’t speak for Deb on this one, just so you know) that my initial gut feeling from my selfish nature looked at Jacob’s arrival as about the largest suitcase ever handled by an airline worker thrust upon my shoulders at the expense of every other bag I was holding. I carried that heavy bag, along with the rest of them, for some time. Then it dawned on me: I’m looking at this all wrong. I had forgotten the petition in the prayer I’ve said 10,000 times during my life: “Give me (us) this day my (our) daily bread…”.
This new situation wasn’t an added burden at all. Neither was all of the other stuff I was dealing with – that I thought was accumulating on my back. Instead, I began to look at life as a conveyor belt. (I still think this is all a Steeplechase, but go with me here for a second). God has equipped me, and continues to train me, to handle the widgets coming down the belt. Sometimes the widgets need fixing. Other times they are absolute gems as is. My prayer is not to release the baggage – He has already done that for me. In fact, He’s already ordered me to let it all drop.

(Matt 11:28-30: “Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.”; Ps 55:22: “Cast your burden on the Lord, and he will sustain you; he will never permit the righteous to be moved.”)

Instead, my prayer is that the belt moves only as fast as I can handle, and that He gives me the ability to handle the widgets as they come down the line. I am to concentrate on each moment at a time, and let Him take care of the rest. Upon my fervent prayers, my hope then is that things don’t turn into that famous scene at the chocolate factory from I Love Lucy.
The current update with Jacob is that he had quite an episode yesterday that brought his heart rate very low, and they had to bag him again. He slowly got back to “normal”. His kidney output is still very little. They’ve been changing up the meds to help, but that hasn’t worked well. Today they plan to do an ultrasound on his kidneys to detect any blockage that might have occurred. Overall, the staff seems to be rather encouraged that he’s acting normal, which still scares us to death on most occasions as we watch him ride his roller coaster during this journey. We are tolerating that ride better now, and joke that we’re old veterans compared to what we were that first week. They will try the PIC line again sometime this week and we really hope that is a success. Time is getting crucial on that. He underwent another blood transfusion yesterday – his first in quite a while. We’re thankful that his blood results seemed to have made some progress. The focus now seems to be his kidneys. The fluid retention is pretty severe at this point and all of his limbs are swollen. I don’t think I’ve ever prayed this much for pee. We’re going to discuss with the staff the idea of getting rid of some or all of the kidney meds, and getting him back on straight breast milk to see if that squares things away. It could be risky, but nothing else seems to work at the moment. We’ll deal with that when it comes down the belt. -R