Zeke on the way home after getting removed from Oxygen

Okay – finally some news, but first some tougher news. 

We met the hearing specialist at Swedish on Sunday morning to go through the next round of tests.  That morning wasn’t any different than any of his other tests; he failed the two different types that they gave him, and his scores were pretty low.  We’re still reading up on all the details, but in a nutshell, there are three types of problems that can lead to hearing loss; blockage, nerve damage and brain interpretation.  At this point, we’re pretty much ruling out blockage, such as fluid in his inner ear, since he hasn’t improved in four weeks.

That leaves nerve damage and brain interpretation issues.  These tests were still somewhat on the screening end – it’s actually good news that he failed both of the tests.  In a brain interpretation scenario, the signal is leaving the ear and traveling up the nerves to the brain, but the brain isn’t translating the impulses correctly.  This is the worst situation, since there is nothing they can do if the brain won’t translate.  If there is nerve damage, the brain will interpret, but the sounds don’t travel up the paths to the brain so it’s irrelevant.  The good news with nerve damage is that you can have partial nerve damage, and they can work with the nerves that you DO have.  Which is why hearing aids work – they can boost volume, etc to translate other sounds into the spectrum that you can process.

So he failed both tests, which is actually good – if the nerves aren’t sending the proper signals, then the brain won’t appear to be processing, causing a failed test.  If the nerves are functioning correctly and the brain is failing, that’s obviously bad.  But, all things considered, it appears that he has nerve damage.  This also explains the situations where we’ve seen him startle, etc.

The next round of tests will come hopefully later this week.  The tests he’s undergone so far have not ventured into the ranges of volume, pitch, etc, so that’s the next step.  If we can see that there is a certain range or volume level that he can operate in, that’s going to help determine the next steps.  They want to get this done as soon as possible, because if there is something that we can put in place to help him hear, they want to do it quickly due to his age.  The next three years are critical to his language development, and he needs to be able to hear as much as possible to help him out with that.  We’re still reading the ramifications if he’s mostly deaf through early childhood, so I can’t comment on all the details yet.

Interestingly, it seems that the nerve damage, if indeed that is the problem, stems from his cord knot and not the anginomas or the bleeding he experienced.  They say that the blood oxygen loss from the knot before and through the birth process almost certainly contributed directly to the nerve damage that we’re seeing now.  It does open up another door – are there other areas of damage from the knotted cord that we haven’t seen manifested yet?

On a more positive note, we had his follow-follow-follow-follow-up doctors visit today.  We were pretty concered with his levels of weight gain at the previous visit and really needed to see 4 to 5 ounces put on.  Turns out he took his challenge seriously and threw on 8 ounces in five days – serious weight training!  So that’s very exciting, he’s starting to fill out a bit and not look quite so emaciated. 

But the really good news came as quite a shock – they took him off the oxygen for about 30 minutes and his O2 levels didn’t change at all.  So rather than the three more weeks that we expected before he was done with the oxygen, they took him off today!  Apparently his lungs did quite a bit of work over the last few weeks and they’re comfortable pulling him off altogether!  We’ve still got all the equipment and we’ll keep it for a while in case he seems to be having trouble, etc, but he’s been off since around 1pm and is doing quite well.

It’s bizarre to carry him around without tubes trailing around and it seems to have made a big difference in his grumpiness levels.  Apparently having those tubes sticking up your nose IS as uncomfortable as it looks when you’re a few weeks old.  It’s obviously a tremendous relief not to have tubes trailing all over the house as well…

So it’s been a good day – hopefully he’ll sleep better with the oxygen gone as well – we could all use a good nights sleep.  Thanks for the prayers on the weight gain, they clearly helped – and what a blessing to have the oxygen off so unexpectedly.  It’s like getting a new baby!  We don’t have another standard appointment with the pediatrician for two weeks, rather than every three days as we’ve become used to.  The next thing on the radar is the next hearing test – please pray!

Ariana & Zeke

Thanks to everyone for your patience on the update here; we’ve fielded quite a few phone calls this week, which we certainly appreciate.  I’ve been trying to get this post done for a few days now, but things have been crazy between a full work schedule, full doctors schedule and getting into a rhythm with Zeke.  Starting the week off sharing at Church was tough too; it was wonderful, but sucked about a weeks worth of emotional life out of me.  I should have it posted tomorrow, hopefully – no later than Sunday afternoon for everyone who wasn’t there…

We’ve had two big appointments this week – the hearing test was put off until Sunday due to some equipment problems; it will be at 9am on Sunday AM if you’d like to be praying at that time…

The pediatrician visit was somewhat discouraging; over the course of a week, Zeke only put on one ounce of weight.  They were expecting more like 5 to 6 ounces, so there is some concern there – he’s eating and pooping as he ought to be, so we’re not sure what’s going on.  We’re scheduled to return for a weight check on Monday – we’ve also put him on a three hour feeding regimen, which will hopefully do the trick.  If he hasn’t put any more weight on by Monday, step two involves moving him back to bottles.  We can live with that, although we’ve obviously been working hard for two weeks now to get him off the bottles.  Step three involves a feeding tube, which is obviously a horrible thought at this point.  So, pray that he puts the fat on his little bones.  We’re not sure what the issues is, it shouldn’t be related to his condition or prior injuries.

He also didn’t make any progress with his oxygen – he didn’t regress, which is good, but they didn’t drop him anymore.  We’d like to get him off, obviously.

We also had the visit with the neurologist on Thursday.  Again, we were affirmed in how good he looks compared to his MRI; the doctor told us he had been looking back over the scans before we came and was impressed not only by his condition but also by his lack of seizures so far.  There are still somewhat even odds that he’s had some seizures but they’ve been so subtle that we haven’t noticed.  He did tell us that if they were serious at all we most likely would have picked up on it.  His reflexes were good and he appears to have use in both of his sides equally.

He did brace us for the fact that even though we could have already been seeing evidence of physical problems related to the bleeding, we probably won’t begin seeing signs until five to six months when he begins some more serious motor skill development.  We’re already getting set up with a physical therapist so that we can keep his muscles toned and limber for when/if the day comes when they can begin specific muscle/brain retraining.  That process will be much more difficult if he has had muscle atrophy between now and then.  So, we’ve got a four week old getting ready for physical therapy.

So it’s been a long week.  It’s tough because he does seem normal most days, once you get past the lump on his head and the oxygen.  Then we have these flashes of reality that are tough to swallow… and we had three or four of those this week.

We’ll know more about the next steps after we meet with the neurosurgeon in early July.  She’ll sit down with the neurologist and compare notes and we’ll all discuss the way forward.  In the meantime, it’s a waiting game for him to manifest symptoms.  We can’t do much to treat him until we see exactly how he’s going to respond.  Apparently the brain is still a major mystery to the medical community.

I’m getting a better understanding of James as we go on… the testing of our faith perfects our patience which matures us as Christians… I clearly have miles to go on the path of patience.

Blessed is the man who endures trial; for when he has been approved, he will receive the crown of life which the Lord has promised to those who love Him.  James 1:12

Finally, some good news today!  Jesi took Zeke back to the pediatrician for his follow-ups on the blood oxygen and platelet counts.  His blood oxygen was up to 98, the highest we’ve seen yet.  He’s ordered over 90%, but even in the NICU he stuck solidly around 91% – 93%.  So, 98 is fantastic and it means we can drop him from 1/8 (liters per something) down to 1/16.  They did this at the doctors for ~15 minutes and he stayed at 95% saturation.  This means he only has 1/32 to go and then he’s off oxygen!  It will probably be another week or two, but this progress is very encouraging to us – getting him off the oxygen will be a large step towards normality.

They called us later this afternoon with the results of the platelet counts – you may remember that within a few days of entering the NICU, his platelet count was at 21,000.  Below 20,000 you begin to spontaneously bleed through your veins, so they gave him a transfusion which boosted him up to 172,000.  You may further remember that when we were getting ready to go home, his count had dropped to 69,000, not a terrible number but much lower than the transfusion.  We were slightly concerned that he wasn’t producing the platelets correctly, but all doubt left when the results came back today – 375,000!  Which is tremendous – it’s right where it should be long term (between 140 and 415,000) and he did it all by himself.  They also did blood work, all of which came back normal.  Again, just like the oxygen, it was to be expected, but expecting it and having it come through are two different things.

His weight was lower than we wanted it to be – he lost about 2 ounces since our first visit last Wednesday.  There isn’t any concern yet, but they’re keeping an eye on it and have scheduled us for a follow up weight check on Thursday.  Pray that he’ll put on a few pounds between now and then (okay, ounces).  They suspect that his diaper may have something to do with it, as well as the timing of when he’s eaten.  At his weight, lots of things are variables, but we’d love to see him put the weight on in the next few days.

Also, yesterday Jesi decided to vacuum the house and noticed that she could vacuum within about a foot of a sleeping Zeke without waking him up.  Let’s just say that we couldn’t get away with that with our other kids.

I found out today that my company added a new manufacturer last week that can provide us with AEDs – so its very possible that I can purchase one at close to cost through my own company.  That would be slick.  I’ve also applied with a group that does nothing but grants to provide AEDs to business and families that need them… plus we have an aunt who spend years working with the local FPD and may be able to get one or two for us extremely reasonably…  so God has a few ways to provide, depending on how it all comes together.

I’m headed back to the office for a few hours tomorrow, beginning to get back into the rhythm of work.  I’ve been able to largely keep up from the house on my laptop, but I’m in desperate need of some focused time on a few projects and some customer face time – I do work in sales, after all.  Today was a good day – a few low spots, but overall we’re beginning to see some semblance of normal life returning.  Again, a long way to go – but we’ll take the encouraging signposts to heart and keep rolling.  Thanks again for the prayers and support – we can’t possibly express how much it all continues to mean to us.

Now it came to pass after these things that God tested Abraham, and said to him, “Abraham!” And he said, “Here I am.” Then He said, “Take now your son, your only son Isaac, whom you love, and go to the land of Moriah, and offer him there as a burnt offering on one of the mountains of which I shall tell you.”

So Abraham rose early in the morning and saddled his donkey, and took two of his young men with him, and Isaac his son; and he split the wood for the burnt offering, and arose and went to the place of which God had told him. Then on the third day Abraham lifted his eyes and saw the place afar off. And Abraham said to his young men, “Stay here with the donkey; the lad and I will go yonder and worship, and we will come back to you.”

So Abraham took the wood of the burnt offering and laid it on Isaac his son; and he took the fire in his hand, and a knife, and the two of them went together. But Isaac spoke to Abraham his father and said, “My father!” And he said, “Here I am, my son.” Then he said, “Look, the fire and the wood, but where is the lamb for a burnt offering?” And Abraham said, “My son, God will provide for Himself the lamb for a burnt offering.” So the two of them went together.

Then they came to the place of which God had told him. And Abraham built an altar there and placed the wood in order; and he bound Isaac his son and laid him on the altar, upon the wood. And Abraham stretched out his hand and took the knife to slay his son. But the Angel of the Lord called to him from heaven and said, “Abraham, Abraham!” So he said, “Here I am.” And He said, “Do not lay your hand on the lad, or do anything to him; for now I know that you fear God, since you have not withheld your son, your only son, from Me.”

Then Abraham lifted his eyes and looked, and there behind him was a ram caught in a thicket by its horns. So Abraham went and took the ram, and offered it up for a burnt offering instead of his son. And Abraham called the name of the place, The-Lord-Will-Provide [Hebrew, YHWH Yireh, or Jehovahjireh]; as it is said to this day, “In the Mount of The Lord it shall be provided.”

Then the Angel of the Lord called to Abraham a second time out of heaven and said: “By Myself I have sworn, says the Lord, because you have done this thing, and have not withheld your son, your only son– blessing I will bless you, and multiplying I will multiply your descendants as the stars of the heaven and as the sand which is on the seashore; and your descendants shall possess the gate of their enemies. In your seed all the nations of the earth shall be blessed, because you have obeyed My voice.”

Genesis 22

I’ve been thinking about faith quite a bit recently. In all truth, I’ve thought of myself as a man of little faith for most of my adult life; sure, there have been a few highlights here and there where I’ve seen the Lord provide, and I’ve been happy to say I was there to see him come through. But honestly, when ever I’ve held my life up against the stunning examples of faith that are handed down to us through the Bible and through history itself, I’ve found myself woefully lacking. I think of George Muler, the apostle Paul, Corrie Ten Boom, Brother Andrew, the prophet Elijah, even the brief glimpses in some of the people that Jesus encounters during his ministry. Wow.

I was reading a few months ago in Foxes book of Martyrs. I try to read a few sections every once in a while since it’s a bit on the heavy side; I can’t handle too many accounts of men singing praise songs to their Savior while burning alive. Perhaps I can’t handle it well because it always leaves a burning question deep in my soul – what would I do?

It’s not so much that I expect to find myself drenched in oil and tied to a stake anytime soon as a price for my faith; but even the consideration picks at my mind in the back of my consciousness. They say every man has his price – what is it for me? Where is the line beyond which I will deny my God and my Savior? At what point is the cost of following God and obeying his word too much?

The Sunday-school answer is obviously never – God will preserve us and strengthen us through any adversity. The Perseverance of the Saints is one of the cornerstones of protestant theology, going back to the Reformation. But in some ways, this opens up an even scarier question. If God will preserve his Saints, and I have fears and questions in my mind that there could come a point where I could denounce my Creator, am I counted as a Saint? Is it even okay to ask?

I have always been proud of my willingness to sacrifice for God (warning bells?). I have always been eager to serve, willing to go the extra step, holding on to even my possessions lightly. I don’t mind (and in some ways dream about) getting the sudden calling; sell everything and go – you’ve been called to an impoverished country to spread the good news. But I’m coming to realize that in my heart, I have been holding back. The thought of sacrificing my family in any way terrifies me. Is this my line? When is the cost too high?

Even since childhood, I have always disliked the story of Abraham and the sacrifice of Isaac. Hated, really, until at least recently when I’ve gained a better understanding of the theology and purposes behind the event. There are plenty of sermons out there that address this story in great detail, covering the symbolisms of God’s sacrifice through Christ, the faith that Abraham had, especially in light of the promise that God had given to him earlier in Genesis. Isaac was the promised child – born to Abraham in his old age – the means to fulfill His promise to multiply Abraham’s family to out number the stars. This was the promised child that God was now asking Abraham to slay (going, by the way, directly against God’s law regarding human sacrifices). Abraham’s final faith rested on one thing – if Isaac were slain, God presumably would raise him from the dead in order to fulfill his promise.

Restrained at the last moment, Abraham was clearly willing to obey God all the way to the end. The substitute was a ram stuck in the thickets and Abraham went away knowing beyond a shadow of a doubt that he could trust God implicitly in obedience. Was the test for God, to see if Abraham was obedient? Or was it for Abraham, to know his own faith? Abraham names the place “The LORD will Provide”… Jehovah-Jireh.

In many ways, I feel that God has put us in a place of sacrifice without our permission or willing participation. God did not come to me and ask me to offer my son on an alter of poor health diagnoses, or potential long term brain damage. Honestly, I would have said no. But here I am – suddenly finding my faith tested and stretched in ways I never considered myself capable of handling. I am finding myself faced with only two choices – turn my back on God in anger, blaming him for the struggles that I now face, for the uncertainty of my own future, or turn towards God and lean on faith.

Here is where I have been surprised by my own actions. By all accounts, I just described to you all the reasons why my most natural reaction should be to curse God and get on with my life – the way that I want to live it. He crossed that line – the “deal” that I made with God that I’ll serve him and do what he wants if he leaves my family alone. Has God not forsaken me in my time of need? And what of my son? What kind of a God would let him be born into this world with the struggles and pain that he has already experienced, let alone what awaits him in the months and years to come? This is my reward for faithfully following?

If, two weeks ago, you’d asked me – do you have the faith to face the loss of your child, coming back from the edge to find a life-long condition and the distinct possibility of permanent damage? I would have answered no. What are the fears we hold dearest? What are those scenarios we play in our minds that are too much to handle? Too terrible to conceive?

It is with great excitement that I write these words now – hopefully I have shared my own frailties enough to be un-prideful and only encouraging. I would describe myself as a man of little faith. I’ve thought that the parable of the mustard seed was a cruel joke – if you have even faith the size of this mustard seed, you can tell this mountain to throw itself into the sea. I would say that my faith is mustard-seed sized. The size of the period at the end of this sentence. I’ve never moved any mountains.

But as I sat in waiting rooms and ICUs for the last few weeks, waiting to hear if my son would live or die, waiting to hear how bad the damage was, waiting to know how irreparably my life had been changed, I dug deep. In the face of adversity and trial far beyond the scope of anything I’d ever experienced, I didn’t question God. At no point did I consider anger with God as a reaction.

I’ve been trying to figure out why. There’s a part of me that almost WANTS to have a good reason to be mad at God.

We know a few things from scripture that we can hold onto both during and in preparation for times like this. God works all things together for the good of those who love him. We will not face a temptation greater than what we can stand up under, or have a way of escape. God knit my son together in the womb. He was sovereign before the foundations of the earth were laid.
But all these things are well and good while the sailing is smooth… that’s never been my worry. Will they hold true when hell breaks loose? I just want to share – as a man who as recently as May 30th doubted – they will hold true.

I have experienced the wonder of having my faith come through for me when I needed it the most. Stretched beyond anything it has ever been required to do, it held strong. I know that I believe what I believe, all the way into my soul. God is king – he is in control, he has a plan for not only my life and my families, but my sons tiny life as well. He gave me a choice – not of obedience in the sacrifice of my son, but of heart response in the face of a sacrifice that was not of my choosing.

I was listening to a country song this morning, a somewhat depressing one about a broken life and broken relationships. One of the lines got to me – “he put the bottle to his head and pulled the trigger”. What is left for me if these trials separate me from God? What kind of wretched man am I of my own strength? I don’t have to work hard to guess. I can’t cope with the things that have happened to us. I’d have to turn to alcohol or drugs or money or whatever else I could find to numb the pain. Turning my back on God means embracing the worst of everything in my life and moving forward with no purpose, no larger picture, no higher goal for the pain, nothing to endure for. Nothing.

Thinking back on those men of faith has been encouraging lately. I think I suffer from saint-hood derangement syndrome. These men are not of a different breed than the rest of us. They have no internal qualities that set them apart from ME. They are men of faith, nothing more. They have faith that is available to ME. I call on the same God that they did, my life is as important to Him as theirs were. And when the chips are down, the faith that I needed was there to pull me through.

This is why we can be joyful in a tough time. This is why I can sincerely say that I am looking forward to the future, no matter what it holds. I am genuinely excited about how God will use our Zeke in the world – not just in our lives, but the lives of those around us. I was reflecting this morning on that very topic. We’ve received letters and emails from people around the world as our fellow Christians pray for and support us. It’s been overwhelming. We’ve received letters from churches underground that could face jail time if their emails to us were intercepted. All they wanted to do was let us know that they were praying to God on our behalf. God challenged me this morning – I suspect that my two-week-old son with apparently no hearing, bleeding time bombs in his head, probable permanent brain damage and a traumatic entry into this world has touched more lives in two weeks that I have in almost 30 years. Is that a sacrifice I can live with? Can I be angry with God for that?

As the days go by, I want to share the specific verses and experiences that have built (and continue building) our faith. I don’t mean by any of this to suggest that things have been easy – quite the contrary. But our confidence in God is unshaken. I don’t doubt that in the coming months and years, my faith will be tested again – and right now, honestly, I can’t handle it. But I know that when the time comes and I have to reach with all I have for the God who loves me, it will be there. That’s the message I want to send out – even if you doubt your faith now. Even if you’ve never had your faith tested in a direct way, one completely out of your control. Even if, deep down in your heart, you think that if you’re tested then you’ll fail. God is faithful. He will sustain you in your faith. When the rubber meets the road, He will come through for you, and you’ll be there waiting for Him. I can’t be more affirmed, not only in my salvation but in my relationship with Christ than to be carried through trial. Do I finally have a glimpse into the heart of Horatio Spafford when he wrote “It is Well With My Soul”?

I can’t wait to see what God does with us on this new road we’ve begun to go down. It’s not even close to over – but the Lord will sustain us. We don’t really have any other choice.

Zechariah 13:9
I will bring them through the fire and make them pure, just as gold and silver are refined and purified by fire. They will call on my name, and I will answer them. I will say, ‘These are my people,’ and they will say, ‘The LORD is our God.’

Jed & Zeke

Well, we’ve been home for a few days now. Things are slowly beginning to get back to normal in a surreal sort of way – we’ve got appointments set out for the next two months with a variety of different specialists. The thought of returning to work on Monday is bizarre in a reality-check kind of way.

We had our first appointment with our pediatrician on Thursday. It went well, although it was hard talking to a man we’ve known for years and who’s brought us up through three other fantastically healthy kids take 15 minutes to read through Zeke’s file and comment that for everything he’s been through he looks good. We didn’t really make any progress with his situation since the visit was mostly for our doctor to get his feet wet with Zeke’s specifics and begin taking over care. His vitals were all stable, which was encouraging. We’ve spend most of Zeke’s life hooked up to a variety of monitors and the ability to watch his heart, oxygen and breathing patterns in real time. Let me tell you how scary it was to walk out into the parking lot with him, no longer reassured that things were as they should be.

They’ll be doing another platelet count on Monday, we’re praying that everything continues to be as it should; we’re finding that all we really want right now is for him to recover from this first bleeding episode fully before another one comes along. We’re growing pretty concerned about his hearing – especially now that he’s home and surrounded by the dull roar that our other children provide. We’ve yet to wake him up from a sound-related incident, including Elijah banging blocks nearby as an experiment. Our doctor agreed that it was a concern, but looked us in the eye and said “It’s probably concern number 12 on the list of top concerns.” I think my son could be deaf. That’s concern #12. What am I supposed to do with that?

More positively, his development up to this point seems to be right on; he is able to be comforted when he is upset, his muscle tone is good and he seems to be in control of his limbs, up to the point that any 1.5 week old should be. He’s also become more aware in recent days, looking all around and focusing on bright colors and lights. We’re hoping to know a little more as we begin the visits with the specialists, although I still can’t quite grasp the fact that I have a pediatric neurosurgeon on speed dial in my phone.

We’ve been getting a fantastic amount of support from all of you – the meals have been rolling in, we’ve had a good balance of visits and solitude in which to recover. We’re never going to be able to thank everyone as we ought, though we’ll do our best.

It feels as though we’re caught in some sort of limbo; it will be weeks before we find out anything new, even then odds are it will be limited to a slightly better-educated guess as to what the future holds. Meanwhile, we trying to find the balance between moving back towards (or perhaps creating a new) normal for ourselves and the other kids, and fighting the paranoia that comes with waiting for the first seizure. Zeke seems to be trying to make up for lost time in the touch and cuddle department, since he spent so much time in the hospital unable to be held. We’ve only been able to put him down for a couple hours today, an improvement over the last few. Naturally we understand and are happy to oblige (we had the same deficit) but we’ve got to get him to sleep for an hour or to without being held so that Jesi can survive when I start going back to work.

We’ve heard an unbelievable amount of feedback on the things we’ve been going through over the last two weeks, and I’d like to discuss it more in the next week or so as we wait for the next round of appointments and tests… God is bringing us along a journey, to where we don’t know… but we’re on the road.

Well, we made it out of the hospital. Yesterday was tough, we had been hoping to get released by mid afternoon, pending the results of the platelet test and the scheduling of the MRI scans. Zeke went down in the morning to have his spine MRIed, but he wasn’t sleepy enough and squirmed too much for a clear picture. So, around noon he was back up and it began to look like we wouldn’t be able to go home after all. More disturbing, his platelet count from the previous day came back low.

Platelets are the component of your blood that allow it to clot – the platelets move to an area of bleeding and clog the leak. When Zeke was born, his count was very low – near 25,000. at less than 20,000 your blood can begin to spontaneously leak out of the veins… ~125,000 is normal, so his count was obviously very low. Two days after he was born, he received a transfusion of platelets and his count soared above 150,000 – there was still some mild bleeding and swelling in his brain a that point and within a few days he had dropped to ~125,000. They left him alone for a few days and then two days ago they ran a final platelet test to make sure he had leveled off. So, yesterday morning that count came back at ~67,000.

Obviously that was a big red flag. My first concern was that he was bleeding in the brain again – when bleeding occurs, the platelets flow to that area, showing a much lower count in the blood sample. I was able to sit with that for several hours until we were able to discuss it with the doctor. She was concerned about the drop, although she didn’t think there was any further bleeding. Apparently the transfused platelets have a relatively short half-life and they were dying off faster than Zeke was producing them. She told us that between the platelet issue and the fact that he’d have to be more sedated for the 2nd try at the MRI, we’d have to spend the night.

That was a tough one to swallow, we’d been pretty focused and geared up to go home.

Ashley and Becky came up and brought the kids that afternoon, which was a blessing; I took them to a park to play and spend time with them, while Jesi, Ashley and Becky stayed with Zeke while he went down for his second try at the MRI. There’s a fantastic park not far from the hospital and it was good to get out and run around for a while… this whole process has been hard on the kids too, although not nearly as difficult as it would have been without the wonderful care that Bill & Becky have provided them.

We had been praying all day for some encouragement – seeing the kids and spending time with Ashley over dinner was a much needed boost, but our prayer was specifically answered late that night. We were feeding Zeke for the last time before we tried to get some sleep, and the doctor happened to be coming through the office (12am!). She stuck her head and let us know that the spinal MRI had come back and that Zeke did not have any cavernous anginomas in his spinal column! This was big news – he was relatively likely to have them in his spine as well as his brain.

Spinal instances of the cavernomas aren’t any worse in and of themselves, but they’re much more difficult to operate on. This would mean that if any of them had bleeding issues, the complications could be much more severe – so you can understand my relief when the scan came back negative. I had apparently not impressed the severity of the situation on Jesi, but once things were clear she was as relieved as I was.

So, come this morning, the only thing holding us back was the platelet count. We woke up early and weren’t able to sleep again after his 5am feeding. It felt like hours before we were finally able to get the platelet count back – he had risen the levels himself back up to ~100,000 over the last 24 hours! Relieved, we started the discharge paperwork and got ready to come home!

Now that we’re home, it’s been pretty exhausting. After we got things unloaded and unpacked, the exhaustion began to surface as we realized how hard we’d been pushing and focusing on just getting home… things have been really settling in as we’ve gotten past the short-term goals and begun having only the longer term issues to face…

These updates will continue to be practical and specific as we talk to the specialists and the doctors about how we’ll move forward with live and baby Zeke… but we may also begin to move things in a more existential direction as we begin the process of working out why we are where we find ourselves…

The last week and a half have brought us closer to death than we’ve ever been – we’ve been pulled back from death only to stare long term disability in the face… then we’ve had the prospect of unpredictable bleeding and seizures leading to all of the above hanging over our head.

I don’t think you can go through these things without examining your life. I’ve had a few shares of near-death experiences, but mostly due to my own youthful stupidity. Near death takes on a different meaning when it’s one of your children. I’m haunted by the question – why us? Not in a bitter, cynical manner… but practically – why us? What is it that we’re here to do, and what does Zeke have to do with it? I have absolute faith that we’re part of the plan… honestly, I’m curious. How does this drive what my family will accomplish in the next 20 years?

First, thanks again to everyone for all your support and prayers; we’re still riding the roller coaster and we wanted to give you all a window into some of the emotions and fears we’ve been wrestling with for the last couple of days. We’ve been flooded with positive responses on Zeke’s progress through the issues with the knot and the aftermath that followed. Please don’t misunderstand; all of those struggles and overcoming them were very real and we are very excited about his progress, his fight back to strength and his recovery from what clearly should have been his death. All of these things are very exciting and we can see the hand of God clearly moving in all these areas.

As we move beyond the immediate needs and fears surrounding those events, focusing on keeping him alive and helping him recover from the stresses of his birth, the practicality of the future is coming into focus and it’s frightening. As I mentioned in the last email, the effects of the cord knot have been completely overcome by our little boy – the host of issues that we feared surrounded him at that point have been moved into the past. The diagnostics from the entire experience brought us into the knowledge of his condition with Cavernous Angioma and the bleeding resulting from it that he’s already experienced. The last 24 hours have been a steep learning curve about a medical issue that we’ve never heard of.

If you don’t have time to read anything else on the subject, please view this video to get a glimpse into not only his condition but the concerns and fears we have about the future:

I’ll provide some more links at the bottom if you’d like to read more, but let me share a few specific concerns, heartaches and prayer requests first. In some ways, we’re dealing with two separate issues – the long term problems with the cavernomas and the more specific problems with the bleeding that has already occurred. Many (if not most) of the cases of Cavernous Angioma are asymptomatic until the 30’s and 40’s – even then, many people have the condition and never discover it at all; their cavernomas never rupture or bleed, therefore never causing any problems. The fact that Zeke has already had a significant bleeding event points towards a much higher probability of continued problems with the various cavernomas that he has. The cavernoma that has already hemorrhaged has impacted a somewhat significant portion of his brain; enough to cause some very real concerns over whether some irreparable damage has occurred. While at the moment his development, motor skills and functions seem to be perfectly normal, it may be months or years before the damage presents itself. The doctors are optimistic that his young brain will be able to work with the damage and potentially reroute neurons that are not connecting properly, but the bleeding area is large enough that it seems foolish to hope that there will be absolutely no issues in the future as a direct result of the bleeding. Obviously this by itself is frightening, although we’re resolute in our willingness to work with him at whatever level is needed; in many ways this is the less scary of the two issues we face.

The fact that Zeke has already had his first cavernoma-related hemorrhage makes him much more likely to face similar events in the future. There are many things that this could mean; he is somewhat likely to have a recurrant bleed in the same cavernoma that he recently bled from as quickly as in the next three years. There are surgical options to help correct specific cavernomas that continue to bleed, but that option can only address specific “troublemaking” locations. Obviously it’s also risky. Another component is his likelihood of periodic light bleeding in different cavernomas across his life. Because the cavernomas are not developed arteries, the risk from a hemorrhage is much lower than from a traditional aneurism – the blood pressure is not nearly as high as it would be in a fully functioning artery, so when the cavernomas bleed, it is generally a much smaller amount of blood. This means that his symptoms may be as benign as very intense headaches, but the most likely situation we’re facing is one of seizures. We’ve been briefed in how to recognize and what to do if/when he begins having the seizures. We’re taking small comfort in the fact that it is very uncommon for death to result from a massive hemorrhage as a result of cavernomas. Large bleeding could continue to be a concern in the same way that the large bleeding that Zeke has already experienced has done; it’s entirely possible for him to have a disabling hemorrhage in the coming months and years beyond what he’s already experienced.

So you can imagine the fears and tensions that spring up when you’re sitting in a neonatal ICU with nurses who are discussing how we need to go down to the local fire department and emergency response teams to brief them on our son’s condition so that they know how to respond in the future.

We do have quite a few appointments scheduled for the next several weeks as we begin to work on discovering exactly how Zeke’s specific case is going to look… although it will take months and years and even then we will never know if we’re right around the corner from a large bleed with no warning.

On the positive side, there seems to be very little evidence connecting specific head injuries or trauma as a trigger to a cavernoma bleed; it’s much more closely linked to blood pressure and the condition of the cavernomas themselves. So the list of restricted activities is more related to the possibility of injury due to a seizure than to a possible head injury…

So we don’t know how our lives will be impacted, at least not to what extent. We’ve got to put all our relatives and friends through infant and child CPR training and it’s been recommended that we have a defibrillator in the house. I can’t tell you how hard it is to have a doctor recommend that you purchase a defibrillator.

Another point of concern is the likelihood that this is a genetic condition that he inherited from either Jesi or I. We’ll both be having MRI scans in the coming weeks to see if one of us has the condition. It is possible that he has a spontaneous case, but the fact that he has multiple cavernomas points towards the likelihood that one of us passed it down. That also opens up the possibility that our other children already have the condition and we haven’t known about it. Ari has had an MRI and we have verified that she does NOT have it, but if we find out that Jesi or I do have the condition then Elijah and Jed both have a 50/50 of having it.

We’re also concerned because he’s failed his second hearing test… it still doesn’t mean too much, other than we’ve got to have more follow up appointments. They don’t *think* its related to the bleeding because if it was related to the bleed, it would probably only manifest itself on one side of his brain, which means he ought to have hearing out of one ear… We’re not sure if they’re just more focused on the brain bleeding and therefore not paying too much attention to the hearing at this point, or if it’s really not a big deal yet, but it’s obviously weighing on our mind… There are still apparently several reasons why he’d fail and still be fine in the hearing department

So, long story short… we’re trying to evaluate our lives and see what things are going to look like. We have just as much responsibility and obligation to our other three children, so we’re going to have to work to find the balance between leading normal lives and giving Zeke the support and environment he needs… which could increase if other of our children are in the same situation.

We’re going to have to pull way back for the next few weeks at least, probably for the summer; I’ll have to spend most of my time away from home on work activities and since we’re still on the tail end of the flu and sickness season we probably won’t be coming out of the house for a while. Also, there are some practical issues, since Zeke will be on oxygen for at least a few more weeks; that’s apparently a common issue with all newborns who come out and have to spend extended time on their backs… the doctors aren’t concerned and he should be off soon – but picture Jesi trying to manage three mobile kids and baby Zeke and the oxygen and you’ll get the idea.

That’s about all I can write at the moment… We may have sent out mixed messages as things have gone on and we’ve made it through hurdle after hurdle… but this last one is a hurdle that we won’t be over until the Good Lord calls us home. We really appreciate all the support that you’ve all provided so far; we’re going to need it in the days and weeks to come, but especially in the next few weeks. We couldn’t have made it this far with out you all, and our confidence in God’s plan for our family. We know Zeke ought to be dead, and we can only imagine how God will use this in our lives and the lives of those around us… It’s not my first choice, that’s for sure; but we’re going to walk down this path and trust that there’s a reason for it all… if our Lord can find glory in little Zeke, we’re ready to be a part of it.

Folks –

Several developments over the last day and a half… First, the short term:

Zeke is doing very very well – he’s begun eating strongly from the bottle and is increasing his nursing with every feeding. He is currently eating every three hours, which is obviously tough to maintain around the clock – Jesi can’t really leave the hospital for more than an hour or two at a time. We were able to completely take him off of the IV this morning, and after he maintained his own sugar levels for a few hours, the nurses removed the shunt entirely which makes our Zeke 100% needle-free for the first time since his birth. He is still on oxygen, but only small levels to help him along. He’s also still hooked up to monitors, but the three wires left are much easier to manage than all the tubes… getting him off the IV was a major milestone and he’s eating very well. Speculation is that we’ll be able to go home late Monday after some additional tests – unless something happens in the meanwhile, Tuesday at the latest.

Long term:

We’re spinning a little bit, as things have unfolded with the MRIs and the discussions with the pediatric radiologist. Since we began this process, the major concern has been complications and damage to his brain through the lack of blood and oxygen flowing through the umbilical cord thanks to the knot that was in it. Long story short (believe me, it’s long) there have been no issues caused by the knot that have persisted beyond the state of shock that it contributed to during and immediately after the birth. This is good news, obviously – the knot in his cord has left no lasting damage or issues. The process, however, seems to have uncovered a totally separate issue with it’s own ramifications. Zeke seems to have a somewhat rare, though certainly not unheard of, condition called Cavernous hemangioma, or Cavernoma. It’s a vascular disorder that creates dilated arteries that don’t function- they have very thin walls and blood does not circulate through them – they look like open spaces (think caverns?) on the MRI and in and of themselves they do nothing at all. The issue surrounding them is their tendency to leak blood or bleed outright, hemorrhaging (though that’s a strong word in most cases) blood into the brain. This has already happened once in Zeke, the spot that was discussed in earlier emails. This instance of bleeding has stopped and is stable – there is some concern that it’s large enough to have a direct impact on those parts of his brain, but we have no external reason to believe this is the case at the moment; in the last four days he has rapidly transitioned into a healthy infant. We’ll be seeing quite a bit of the specialist in the weeks and months to come as we ascertain exactly what Zeke’s specific case looks like for our day to day lives. It’s possible that he’ll never notice a problem, it’s possible he could have infrequent or even recurring seizures as small areas bleed and put slight pressure on his brain. The doctor was very optimistic that we’ll be able to live with the issue in a reasonable way – he recommended that we don’t sign him up for power lifting or other activities that dramatically increase the pressure of blood in his head, but beyond that we’ll have to see how things go in the real world for the next few years/decades.

Some interesting things: most instances of Cavernoma are hereditary and both Jesi and I will be going in for MRI’s over the next few weeks to see if we’ve passed it directly through the genes. Our second child Ariana has had an MRI for an unrelated reason, and he verified that she does not have the same condition. Most cases of Cavernoma are not diagnosed, and those that are don’t surface until the late 20’s and 30’s. There are surgical options to address specific cavernoma’s that are creating repeated problems, but the entire situation can’t be addressed or “cured” in this way.

So, in some ways it feels like the carpet has been pulled out from under us; we’ve moved from an event-related injury and it’s ramifications to a much larger condition that will require us to stay on our feet for quite a while. The good news again is that he’s doing extremely well in the last few days and we’re going to be going home with him soon. He has more tests scheduled for Monday and if things go well, we may take him home afterwards.

Thanks again for all your prayers and support – we still have a long way to go, but we’ve passed through the immediate danger… We miss our other kids and we’re ready to get out of the hospital, but we’re sure glad Zeke is alive and thriving as he continues to grow stronger by eating.

Dave and Dan feeding all the other kids in the hospital cafeteria

Just a quick one – it’s late and we’re running on empty…

It’s been a long day, started out pretty frustrating but things have gone well all in all. We’ve got some direction and goals now which helps quite a big. After speaking with the latest specialist, things are looking good – the major thing standing between us and taking Zeke home is his eating. At the moment he’s still working on nursing, starting tomorrow the docs are comfortable with his gut processing food again, its been long enough since the stress that it should have healed up and righted itself. We’re a bit frustrated since Zeke is still pretty wiped out and seems to think that trying to nurse is the ultimate in sleep-aids. Still, it is encouraging – he’s latching well, just falling asleep almost immediately. No one is worried yet, apparently it is very common after the things that Zeke has gone through to spend a few days in total recovery only to wake up to his hunger within three or four days and have things “click”. We’ve been told we’ll be here possibly another four or five days, depending on how he picks things up… but at least we’ve got something to work on. He’s only on an “aid’ dosage of the oxygen, so that’s no longer a hurdle…

We still don’t have any clues to the future – he failed his hearing test this morning, although we’ve been told that 10% of all infants fail it that actually still have hearing – there are three factors – the antibiotics could be interfering, he may have some fluids in his ear and the test itself is for congenital failure in premies, and he’s full term. SO, totally inconclusive. I’ve personally witnessed a beeping alarm in his room wake him up, so we’ll see what happens.

He also went in for an MRI today, but was too upset and moved around too much so they’re trying again tomorrow. We’ve been told that a brain ultrasound is similar to reading a Doppler radar map of a storm – you can see things if you squint, but not much more. Hopefully the MRI will give us more detail into what’s happened so far, but even then they’re telling us that they’re not going to be able to answer the big questions of his future development.

It’s tough right now because we have to work on feeding him every four hours… so we’re on rotation at 10am, 2pm, 6pm, 10pm, 2am, 6am, 10am, etc. It takes about an hour to feed and pump, so we’re never able to sleep more than three hours (which we expected with a newborn) or be more than an hour away from the hospital (which we didn’t expect).

But again, in the grand scheme of things, we have very little to complain about. Thanks for your continued prayers – pray our boy gets an appetite fast and we can take him home!

First, thanks again for all the support, cards, emails & phone calls… it’s really meant a lot to us and we can’t thank you enough.

It’s been a good day for Zeke; he has been moved out of his incubator and into a regular crib, so he is regulating his own body temperature, which is fantastic. He has also graduated from the oxygen bubble; he’s still on oxygen through a nose tube. His blood sugar is still being regulated by dextrose intravenously, but the doctors suspect that once he begins eating, he’ll be able to regulate that as well. He’s begun the process of learning to nurse, though he hasn’t really gotten anything down yet… but that’s just fine with the doctors, who are still concerned that his intestines and stomach are recovering from the stress. Apparently your gut is the first to go and the last to come back in a blood shortage situation, so they’re very content to let him rest his stomach for another 24-30 hours before really hitting the milk hard.

SO – we’ve gone from potentially loosing him within minutes on Sunday to concern about his stabilization on Monday to the end of today – concern for the next few days, weeks and years. It’s been quite a ride.

The brain ultrasound came back and we’ve discussed it with the head doctor; they are going to go though it again this afternoon with a pediatric radiologist for a second (and more specialized) opinion, but there are a few areas of concern. Least concerning, he has some bleeding in the part of his brain that produces spinal fluids – this is apparently common and poses no great issue. More concerning is a quarter-sized spot in his rear lobe that appears to be blood, fluid or swelling of some sort. It’s difficult to tell what it is or what effect it could have – the area is related to the right side of his body, they think specifically his eye site; though there is no outward evidence of any issues at all, which is encouraging. Perhaps most concerning is his cerebral cortex appears “bright” in the ultrasound. The doctor over him is much more confident in discussing cerebral symmetry issues (which his is perfectly symmetrical) than the brightness which, in her words, “may be nothing at all”. That’s a big part of the discussion this afternoon with the pediatric radiologist, who is presumably much better at reading children’s brain ultrasounds.

Several points of clarification/interest… His condition is totally stable, so whatever has happened has happened – he’s not in danger of growing worse or causing further damage – what is, is. Also, the bleeding patterns he has exhibited are fairly common among premature deliveries, most of who recover completely. Some studies have suggested that the condition is actually much more common among full term babies, but since no one has any need to ultrasound the brains of healthy, full term children, no one knows for sure. Zeke was also examined by a pediatric muscle development specialist (related to the cerebral issue) who was very pleased with his reflexes and had only positive things to say about his development. From his current state and especially his recovery in the last 12 hours, he’s behaving like a normal baby in just about every way.

At the moment we’re waiting for a couple things – his complete immediate recovery that will allow his discharge from the NICU and hopefully let us take him home… this is looking promising, hopefully by the end of the week… the other thing is his mental faculties and damage, if any. Currently, we’ve got a spectrum of possibility that runs the gambit from absolute recovery with no ramifications all the way to severe mental retardation through Cerebral Palsy. All outward signs currently point to something somewhere in the middle towards the lighter side of things, and they’re telling us over and over that babies brains are “plastic” and don’t even finish growing until ~3 years old. They’re planning more rigorous tests for early next week which should shed some light on things further, but the reality is that we may not know the extent of the situation for years to come.

Bottom line – we’re pretty shot, but continue to be nothing but happy that we’ve got a fighter and that he’s made it through the worst. Even though we have reason to suspect the best, we’re prepared for the worst and know that but for the direct hand of God moving in his little life, he wouldn’t be with us at all. Somehow it becomes easy to embrace an unsure future when you get as close as we did to burying one of our own children.

Thanks once again for the support from everyone – it’s been very meaningful to be reminded how much you all care for us.