Two months have passed since our last update, and quite a bit has happened. There have been many things that we didn’t know the meaning of until we got the latest round of testing completed, and part of the delay stems from those tests getting pushed back from mid November until just yesterday, December 9th. As with most things of this nature, the more things we learn, the more we realize we don’t know. The more specialists and neurologists and neurosurgeons that I talk to, the more certain I become that we’re all just sailing along in the dark when it comes to the human brain. It feels like looking at medical manuals from the dark ages when we had only the most rudimentary understanding of our bodies.

Over the last two months, we’ve been working with several different specialists on different aspects of Zeke’s development, focusing especially on his physical muscle development and his hearing. There have been some areas, especially in the last 3 weeks that we’ve identified areas where Zeke is behind and also seen some good improvement in those areas when we focus on them. He’s showing some real stiffness in certain parts of his legs and right side, and he’s behind in some basic physical development areas like rolling from his back to his stomach.

We haven’t been able to really put everything together in a concrete way until we got the results from yesterday’s MRI and had the discussion with Zeke’s Neurologist. When Zeke was first born, the initial MRI showed several things; a large bleed area in his left frontal lobe and tens of smaller bleed areas in different locations throughout his brain. The initial diagnosis was that he was born with Cavernous Anginomas, the small defective blood vessels spread throughout his brain that carried the potential to spontaneously bleed into his brain. The consensus was that one of these areas had hemorrhaged as a result of his somewhat traumatic birth (with the full knot, etc) and caused the large bleeding in his brain at birth. This meant that not only did we need to face the initial repercussions of the bleeding, but we also would face a very uncertain future with the likelihood of subsequent bleeding events.

Several months after his birth, we had an initial consultation with a neurosurgeon – when they have advanced warning about children and adults who are likely candidates for needed neurosurgery in the future, they like to be as familiar with the case as possible before surgery is required. During this consultation, the neurosurgeon expressed some interest in a second possible explanation – a scenario that involved many small spots of bleeding along with the large hemorrhage caused by the hypoxic state during the birth from the cord knot. At the time, she refused to speculate on which theory was correct – there was an equal possibility that either one was our situation. Her solution was simple – at 6 months, we would conduct another MRI and look at his brain. If the anginomas were present, they would still be there; we would have an established history with the cavernomas. If they were absent, it would show that his body had absorbed the small spots of light bleeding and that they had not bled since – demonstrating that it was a single-event bleed and not an ongoing medical condition. Much of our focus and direction moving forward would be determined by this diagnosis – if he had an ongoing condition or if it was stable.

The largest concern we had yesterday was the general anesthesia that Zeke had to go under in order to complete the MRI. It’s scary to put anyone under, but when that person is less than a year old it gets particularly worrisome. With the neurologist and MRI unit an hour away, the hospital visit was an all day affair beginning at 5am and not ending until dinnertime. I hadn’t been in a hospital since his birth, so it was a bit of a flashback as we spent the day in waiting rooms and wandering hallways. We were very fortunate to be able to meet with the neurologist yesterday afternoon, just a few hours after the MRI images were taken. Zeke made it through the scan without any problems and bounced right back from the anesthesia without any problems – a big relief.

When we were finally able to sit down with the neurologist, it was tough to look through the pictures from the MRI. While we knew we were almost certainly looking at one of the two outcomes, it was easy in the back of our minds to leave that wishful third possibility open – that it was all a bad dream and that his brain was perfectly normal. It was also easy to compare the outcomes and declare one of them “good news” and one of them “bad news”. As it turns out, it’s all just hard news.

One bit of clearly good news is that Zeke does not have Cavernous Anginomas as we first were told. As we scanned through the pictures of his brain, only three or four small dark spots remained where before there had been closer to forty or fifty of them. This means that the hypoxic state caused by the knot in his cord caused pinpoint bleeding throughout his brain – almost all of the spots of bleeding had been reabsorbed and were gone. This alone is outstanding news, since Zeke’s condition is static – there is no concern that he will experience any further bleeding in his brain, and his current state should not worsen. Obviously this means that we can spend our energy working with the capabilities and resources that Zeke has rather than constantly preparing and watching for another hemorrhaging event. It also means that we won’t “loose” him any further than he is presently – that is to say, he’s not in any specific danger of growing older, learning to read and then experiencing a brain-damaging bleeding event and loosing capabilities that he’s gained. Obviously that’s good news, and has a pretty dramatic impact our family’s future – it’s not nearly as important now where we live, how close we are to super-specialists, etc. Not to mention, we can take a breath and just focus on Zeke and not on what may or may not happen tomorrow/next week/in twenty years.

So – that’s good news. We hadn’t, however, fully wrapped our minds around the alternative. We’d been ready for the worst news, but hadn’t really appreciated that our choices hadn’t been good or bad, they’d been bad or worse. So now worse is out, which is great – but we’re still wrestling with what we do have. Zeke has had a large bleeding event in his brain, and it is already clear that it’s affected his abilities. This means Zeke has Cerebral Palsy, which is an unspecific term for a whole spectrum of conditions that involve damage to the brain and impaired physical capabilities as a result. It also means that we still have relatively no idea what Zeke will be like as he grows older – we can guess at some general things like he’ll likely struggle with weakness and coordination problems with the right half of his body. Still, any positive signs that we have now are only positive signs of what they are – that is to say, Zeke can clearly see us and recognize us and responds to us. That’s a great sign, because he has visual acuity and can recognize and remember us. But it’s not an indicator of anything further – it doesn’t mean that he’ll be able to learn how to read or comprehend algebra or even process and use language. It doesn’t mean he won’t, but it doesn’t mean that he will either. His current physical capabilities are good, although he is behind developmentally – we’re part of an early intervention program which will prove to be invaluable for his progress. To be able to help him with physical and speech/language therapy this early is going to be very beneficial

So here it is in a nutshell – we don’t know the impact of his brain damage. We’ve seen the image scans and he’s missing about 10% of his brain – the area where the bleeding occurred is now a large fluid pocket, and there’s no replacing what’s not there. It does extend down into his stem and therefore will likely interfere with the transfer of information between parts of the brain that are not damaged and other parts of his body. We will basically be working with him as he grows up and as soon as a problem manifests itself, we’ll address it. That may mean that we’re doing speech, hearing and physical therapy for the next 5 or 6 years and then discover higher cognitive issues. It may mean we’ll be fitting him for leg braces in 16 months. We just don’t know.

We do know that he’s stable – his condition and brain damage won’t (barring a totally separate event, obviously, same for all of us) get any worse and his capacity and function won’t degrade. This is also true for his hearing – it shouldn’t be a progressive loss, so the hearing he does have now should stick around. We also know that he’s started beginning problem solving, which is good; our physical therapist indicated that he’s already showing that he’ll work through physical difficulties and find a way to get what he wants. Apparently Cerebral Palsy patients who face physical problems do much better when they have the ability to work through the problem solving aspect of “how do I get my body to do what I want”. So that’s encouraging.

We also know that we can finally focus on what we have; all of our energy now goes into making sure that we’re there to respond to his development as further issues develop. We certainly did receive good news yesterday, and we’re very excited that we can take a deep breath and relax about ongoing catastrophic medical events. It has been tough to finally grasp the reality of having a child with severe hearing loss and significant Cerebral Palsy, especially in the face of not knowing what the future holds for his capabilities. We’re seeing problems already, but we’ve also got plenty to be thankful for – plus he’s about as cute as they come. The next three to six months are going to tell us quite a bit about his mobility and physical ability in the coming years – after that, we’ll just have to see.

We’ll do better with the updates – the last two months have flown by and I expected to have more /bigger news earlier than today. We’re not scheduled to have regular MRIs or anything like that – so updates should be calmer and less significant, at least for the next few months. Thanks again to everyone for your continued prayers and support – we’re very happy to be moving forward now with what we have and giving Zeke the love and support that he needs.

Well, It’s been a long few weeks.  We’ve been struggling with some job-related things for about a month now, unfortunately the pay cut is now official.  I’ve been working like a madman on a separate project that I’ll be unveiling later this weekend, but for now here’s the latest on Mr. Zeke.

First, the good news!  Zeke grew 20 ounces in 28 days which is tremendous.  He’s also been very responsive and loves to interact with us; his smiles are getting bigger all the time and he’s experimenting with new expressions.  He loves to play, especially after he’s woken up from his nap.  The hearing aids are working very well, he wears them for a couple hours two or three times a day.  When he’s had them in for a while or when he’s tired they become a bit overwhelming for him.  When he’s rested and ready to play, he loves them!  The bouncy seat with the music and flashing lights has become a favorite, especially when he can hear the music.  He was refitted for the part of the hearing aid that goes into his ear today; then we have no more appointments with the ear folks until the ear molds become too small for us to work with.

We had a monthly check up with our pediatrician today; Zeke is looking good and growing well, still hitting his developmental marks on time.  That continues to be a relief and it’s very exciting; he’s playing with us and eating well and starting to get a real rhythm to his sleep at night.  So, as far as Zeke goes, Zeke is doing very very well.

Then the bad news.  We had a long talk with our doctor about the next few months as we move into the winter season.  I want to preface this by reminding everyone that we’ve developed a tremendous relationship with our kid’s doctor over the last six years that we’ve been seeing him.  It’s so hard to find a health care provider that you trust and that agrees with your general health-philosophy.  Our philosophy is generally laid back; keep everyone safe and let things take their natural course.  He’s been tremendous at helping us know what things are serious and what things can wait through the weekend, which preventative measures are worthy and which are a waste of money and time.  I’m taking the time to explain this, because what he told us this week really shocked us and is forcing us to reconsider quite a few things.

It basically comes down to the amount of time that Zeke spent on the oxygen after he was born.  We’ve had a generally optimistic outlook on his development and overall health up to this point, and we’ve been right to be – he is doing well right now.  The issue is his susceptibility to a host of seasonal sicknesses, particularly the respiratory ones such as the flu (swine or otherwise), whooping cough, RSV, etc.  His weakness doesn’t have anything to do with his condition per se, but the combination of the oxygen use and his age (obviously significantly under a year) make him very prone to contracting these illnesses, and most or all of them would be hospital events at the least.

We told him that we’d been feeling like we were somewhat paranoid about taking Zeke out, but that we’d been doing so for the last month or so in controlled environments.  He looked us in the eye and told us that we haven’t been nearly paranoid enough and that we were now moving into the worst part of the year.  We were pretty taken aback, especially given how well Zeke has been doing .  To add to the weight of his verdict, he is a God-fearing Christian who understands fully the need for church and social interaction for all of our kids.   He specifically told us that we can’t bring Zeke to church again and that to do so would be grossly irresponsible.

So we’re not sure what to do with all this – obviously we won’t be bringing Zeke around public places for a few months.  Throughout this entire summer we’ve people ask us if we weren’t being over-excited by some over-zealous doctors.  We’ve strived to maintain a balance between reason and caution, caution and fear.  We’ve sought a variety of opinions on almost all of the issues facing us.  The most sobering aspect of all this is that this strict direction came from one of our more practical medical advisors.  The big specific concerns are not mythical monsters in the closet, either.  We’ve had RSV and Whooping Cough circulate among our friends and their kids in recent years.

At the moment we mostly want everyone to understand what we’re looking at for the winter months…  our older kids can go out and interact (with obvious close supervision and clearly good health in their friends) but we’ve been told especially Jed can’t be in a group babysitting or play environment.  Obviously Jesi and I can interact with other adults, but most if not all of our social interactions for the next few months will have to be divided between us as one of us stays home with Zeke.  We can’t even really have people over (except those of you that don’t have or don’t bring kids over).  We’re basically going to be recluses until the spring; which is going to be tough.

How can you all help?  I don’t know yet.  I’ll have plenty of interaction through work, but I need to make sure that Jesi gets out periodically and can visit with other women.  You can pray for our health – especially for Baby Zeke.  This is not a permanent frailty – once he reaches a year things should hopefully (really, hopefully is all we have) improve considerably from the immunity perspective.  It’s the combination of his 3 short months of age and his 1.5 full months of oxygen that have left him open to infection and sickness.

Needless to say, we feel like we’ve been walking around with a little flashlight and then the sun came up and we saw that we were walking on the edge of a precipice.  We’re starting to get used to these life-changing developments; this is just the next chapter.  This, too, shall pass… at least we hope so!

The hearing aids are in!  After a long 4 hour appointment this morning, Jesi brought Zeke home with his first pair of hearing aids.  The difference is very noticeable when he is wearing them – he blinks and starts at much much softer sounds.  He seems to enjoy hearing quite a bit, although it was a little overwhelming for him at first.  For the next week or so, he’ll only be wearing them for a few hours at a time while he’s awake so that his ear can get used to having them and not get irritated.  They’re super cute and he doesn’t seem to mind them at all; his favorite bouncy seat is much more engaging for him now that he can hear the music; and he’s responding much more to Mommy’s voice.

Thus begins a life of assisted hearing; we’re just grateful that they’re available and that we can already see such a difference in how he interacts with us.

Latest update….

OKAY!  I apologize for the lengthily delay between updates…  things have been crazy and we feel like we’ve been hanging on for dear life.  It seems like there have been no areas of our life that hasn’t been touched in the last month, from sickness with the kids (still working Jed through a 104 degree fever even as I write) to a job saga that ended in a new assignment that has me putting in 11-12 hour days to the ongoing doctors appointments and a special project that I’ve been working on in the evenings for a few weeks now (more on that later).

Other than the general insanity, things are going fairly well.  Zeke is progressing normally so far, including a few milestones that are very encouraging.  He’s started to respond to us visually and even to smile at us when we play with him.  Needless to say, that’s terrific since we know that he has visual cognition and is processing the things he’s seeing.  We weren’t sure he’d do either one of those, so obviously it’s fantastically exciting to have him interacting with us.  He’s also rolling over from his tummy to his back, another milestone that he’s actually been early for.  He’s also beginning to establish some rhythms, including sleeping for around 5 hours every few nights.  That’s been a real blessing, though the sickness with the other kids has interrupted that stretch most nights.

Most of the energy with the doctors at the moment has been going to the hearing problems that we know he has.  We’ve spent several long (4 -5 hour) appointments with the hearing specialists at Children’s.  His hearing loss is confirmed, it is moderate in his left ear and severe in his left.  The tests have indicated that it is a nerve damage problem, which is positive because it means they can effectively use hearing aids to boost the sounds that he can here.  He was fitted for the hearing aids last week and on Monday we have the appointment to get them hooked up!  We’re excited for him to be able to hear us and hope that he’ll respond well to our voices.  He’ll have to get the inserts refitted every few months as he’s growing so much in these first few years.

His hearing loss is stable and won’t deter ate according to the doctors.  He can also hear, but the levels are turned way down.  One estimate that was given to us was that he can hear a vacuum cleaner the way we would hear water dripping.  Even with the hearing aids he won’t ever be able to hear normaly, in much the same way that our older family members with hearing loss struggle to distinguish sounds in noisy environments, he’ll always wrestle with that.  But in like manner he’ll always be able to turn ‘em off when he’d rather not be hearing what’s going on J

Another big praise is our state legislature.  We found out a few weeks ago that insurance companies don’t pay for hearing aids, which left us facing ~$5,000 in out of pocket expenses for the hearing aids – even at his age, they’re critical since hearing is central to language development starting around 3 months.  Long story short, this year Colorado passed legislature requiring insurance companies to pay for hearing aids in children under 18.  We were still sketchy, since there has apparently been quite a bit of interpretation by the insurance companies about what that actually means.  But we found out on Thursday that Zeke’s hearing aids will be entirely paid for by the insurance, a tremendous blessing.

Plenty more appointments in the coming weeks – I’ll be better about a more frequent update and some more pictures in the coming weeks.  We’re desperate for life to slow down a bit and burrow in for the winter.  More on that project that I’m working on as well – it’s not ready to be unveiled yet, but it’s close.

Apologies for the week and a half of silence!  Things have been going well, we’ve mostly just been continuing to get into the groove of regular life.  Zeke finally started finding a nighttime routine a few days ago, and we’ve been trying to catch up on a month’s worth of sleep depravation.  He’s still up quite a bit at night, but only for shorter periods; now if we could just get the other kids to sleep past 6:30!  We’ve made a few trips out of the house finally, once to church last weekend and again for a trip to the store – it’s been good for Jesi to leave the house for something other than a doctor’s appointment.  

We had two appointments this week, our first visit with the physical therapist and our first visit with the neurosurgeon.  When the neurologist first told us to begin physical therapy, we were somewhat skeptical; after all, he’s 5 weeks old and seems to have full mobility.  When our pediatrician wholeheartedly agreed, we took it a little more seriously – you’d think we’d do whatever the neurologist told us to do, after all, he is a neurologist.  That’s up there with rocket scientist.  But we’ve known our pediatrician for quite a long time now, and we’ve learned that when he thinks something is serious to sit up and pay attention.

The visit was actually quite helpful – apparently there are a whole host of problems that could be looming on the horizon that we can’t anticipate for another 4 to 6 months.  Starting physical therapy now will give us a healthy headstart on any of those issues – keeping his muscles toned and flexible now is a big deal.  They also noticed that he has a real tendency to favor turning his head to the right side – he can and does turn it to the left, but if he has a choice, it goes to the right.  We’re keeping an eye on this and purposefully moving him back to the left, also trying to stimulate him from that side so that he independently turns his head that direction on his own.  They’re not worried yet, but the want him to develop “symmetrically”.  We’ve got a few exercises to do with him every day and we’ll be going back in a couple weeks to check back in. 

The real news comes from the neurosurgeon.  Frankly, we weren’t expecting much of anything from this visit – we’ve met with the neurologist, and the plan was to keep the neurosurgeon in on the loop in case some of the cavernomas create larger issues in the coming months.  They were supposed to talk and we were supposed to meet just to keep everyone on the same page as we waited and moved forward.  So, we were a bit blindsided by this one.

We sat down with the doctor and went through the charts and discussed some of the history… then we were told that they have a second theory and are now questioning the original diagnosis of cavernous anginoma.  It’s not off the table, and in fact they won’t even give me a ratio of possibilities – so they’re very clear that they’re not saying he doesn’t have the anginomas.  But they’re introducing another possibility.

Apparently for the anginomas to show up on an MRI, there has to have been some level of previous historical bleeding – even if they are present, the spots that are appearing on the MRI need to have bled at some point in the past.  This makes diagnosis in a infant a very, very rare occurrence, since the likelihood of even minor multiple bleeding incidences at that age are slim.  Because of this, the neurosurgeon wants to hold a second possibility that he doesn’t have cavernous anginomas at all, and that with a third MRI taken a few months from now would show that the spots are gone.

Sounds like fantastic news, but it creates an alterative scenario that is as bad, if not worse than before.  Well, at least different.  The spots on the MRI that were diagnosed as cavernomas were in fact there – which means that there was small bleeding in approximately 15 areas as well as the large bleeding in his upper left brain.   So, something caused this bleeding – even if they’re not cavernomas ready to rupture and bleed in the future, they’ve bled.  The suspicion is  that it is directly tied back to the hypoxic state caused by the knot in his cord.  Apparently there’s a condition (this is all still pretty new to me, so I’m not hip to the lingo yet – forgive me) whereby the stress of the knot and the lack of oxygen can cause spontaneous spot hemorrhaging in various locations throughout the brain.  Since we strongly suspect that he was in such a state for a  period of time prior to the delivery (you may remember the suspected nerve damage that has affected his hearing), it seems to hold up to what we know happened.

So the good news would be that we’d be back to the original fears – the damage was done at one point in time and the likelihood of further bleeding and therefore further damage to his brain would be significantly less.  The pressure of waiting around for his next bleeding incident would be gone.  The likelihood of seizures would not be gone – anytime there is any kind of damage to your brain, your risk of seizures skyrockets.  We know he’s had bleeding in many different areas, any of which could now be very prone to the short-circuits that cause seizures.

The bad news would be the impending damage that has been done beyond the scope of what we’d originally thought.  In the cavernous anginoma model, the various spots wouldn’t mean damage – simply areas where he has a propensity to bleed in the future.  We’d have one bleed location with at least localized damages that we could work with.  Under the hypoxic model, those spots were bleeding areas that were caused by the lack of oxygen.  It points to a much more sweeping level of damage.

They even took away our encouragement at his progress so far – apparently everything he’s doing right now is centered in the brainstem as it connects to the spinal cord.  So while it is encouraging that we’re not seeing any specific negative effects so far, it apparently means almost nothing.  We’ll know much more in the next six months as he begins development and we can start tacking milestones, but in the meantime we really have nothing to hold on to.  We kind of pushed them to give us a range, starting with “everything could be fine, right?” but they wouldn’t even start us off there… They used words like “may never walk”, “may never talk” etc.  So that was great.  There are, of course, many things that can happen between now and then.  Apparently his final state is 100% determined by how is brain is able to make the connections as he develops.  We were told that the best (and really only) thing we can do for the next few months is play with him and interact and stimulate him as much as we can while his brain makes those developments.  Apparently this prognosis stands for the anginoma model as well, but the possibility of damage seems greater if the knot cut him off as badly as it seems it might have.

 So, we’ve been told that we just have to wait and see “what we have to work with”.  They’ve scheduled an MRI for when he reaches 6 months; at that point, they’ll be able to see if the bleeding from his first MRI is still there (showing cavernous anginomas) or they’ve been carried away by the brain fluid and are gone (showing the hypoxic state).  In the meantime, we get to wait, watch for seizures and make sure he doesn’t favor the right side too much.

It’s been a long few days – we’ve really been encouraged with his progress so far and he’s becoming more and more enjoyable as he finds his rhythms… but it feels like the rug has been pulled out from under us.  Again.  Probably not for the last time.

Keep praying for us – we need it now just as much as we ever have.  The things wrong with our boy are so small, it just seems like an easy thing for God to fix.  We’re praying for it, but I’m still personally convicted that the things God will do with our Zeke don’t have to do with his miraculous story of healing.  Any prayer warrior out there is welcome to prove me wrong – but don’t forget to pray for the continuation of His will, not just for Zeke but for our whole family. 

We still can’t thank everyone enough for the help and support – I don’t know how we would have made it this far without all of you.  If you haven’t gotten a personal thanks or reply from us, it’s an accident; we’re trying to keep up with everyone, but the responses have been so overwhelming. 

If you don’t hear it any where else, Thank You!

P.S. – we’ve been lazy in getting the CPR classes scheduled. We’ve been jolted back into action; look for some dates out later this week! Please attend if you can!

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!

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

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.

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!