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.

Folks –

First, thanks for your prayers over the last 24 hours – it’s been tough couple days. Long story short, Jesi went into labor early Sunday morning (1am) and we left for the hospital around 6:30 in the morning. Dropped the kids off, arrived and checked it at ~7:30am. There was concern as soon as we got her hooked up to the monitors, the Zeke’s vitals were very flat and he wasn’t responding well to the contractions… over the next few minutes he didn’t improve and the urgency levels rose as the hospital staff got quite a bit calmer (in that scary calm doctors get when things go bad) Jesi was pushing (only 8cm dilated) and after another few minutes they began using words like “get the baby out now”. The midwife was pushing for a regular delivery, but it came down to one last opportunity – as the nurses prepped Jesi for an emergency C Section, she pushed like I’ve never seen before and shot him out in one tremendous push. They had suspected that he had the cord wrapped around his neck (causing the distress) but as it turns out he had a knot in his umbilical cord. He wasn’t very responsive and was very purple… they pegged him at 4 APGAR and then upgraded him to an 8 after five minutes… they listed him fair at first and then stable again after five minutes. After they wheeled him down to the nursery, they did some tests and found his blood sugar was very low – they wanted a reading above 40 and he was at 12. So, he went to the NICU and was subjected to further tests – his oxygen levels were low, his blood was acidic and they were concerned that he had respirated merconium which would cause further complications… long story short (again) he’s been in a state of shock after the delivery and the stress of the knot which has thrown all of his chemicals out of whack. He stabilized well, yesterday they injected him with 32cc of sugar water to bring up his levels, he went to 36 then up to 67 and held strong for a while at 112 which was fantastic. They began backing him off of the dextrose and the oxygen last night to begin weaning him off and allowing him to maintain his own blood sugar. His dosages dropped about 30% and then he stopped maintaining the levels – so currently he’s at 65% and they’re not backing him off any more… he’s been zonked out for the last 20 hours or so, but has begun waking up and getting angry (which is great). They ran more blood tests a little while ago and it came back positive for an infection – he’s been on antibiotics since yesterday, turns out that he did indeed respirate the merconium and as a result has a lung infection that is causing his respritory rate to be elevated and is affecting the rate of his blood oxygenation. In some ways this is good news, because it helps to explain some of the other issues that he’s having, including the blood sugar levels; apparently they’ve leveled off at the amount of sugar he needs to be burning to fight the infection – which would also explain why they can’t back further off of the sugar water.

The scariest thing at the moment is the potential long term effects of the knot and the time he spent cut off from a fresh blood supply. I just got out of the NICU where they gave him a brain ultrasound to check for dead spots in his brain. So far, his responsiveness is very encouraging and we don’t suspect brain damage – but it’s a possibility. Also, other organs could be impacted, they’re testing for that right now as well. He has had fantastic organ responses so far, his digestive tract is functioning, etc, but the possibility still exists.

It’s been very difficult since we haven’t been able to hold him since he first was born – we each held him for about a minute before they whisked him off, and at the moment he’s connected by a bunch of tubes and monitors. Jesi was able to hold him for a little while in the NICU but we won’t be able to hold him more than about an hour per day until he gets stronger. It’s been very hard to have a newborn that we can’t interact with more than a few minutes at a time.

We’ve been reflecting on what a miracle we’ve experienced already – statistically, Zeke should be dead. His due date wasn’t for another 9 days and we’ve been told that if he had waited even another 6 hours that he would have been stillborn. So obviously, having a newborn in the ICU on the heels of almost loosing him has been tough. We don’t have any immediate fears or impending catastrophes, but we’re under a lot of stress, especially waiting to hear back on the brain scans… We’re very grateful that we gave birth in the best Neonatal care hospital in the state.

So, please pray – we have reason to believe that he’ll make a full recovery and graduate from NICU to be a regular, healthy baby. Plenty of risks and dangers yet to come, but we’re just grateful to have him – no matter what the future holds.

Jesi is doing very well, recovering quickly… she’ll be discharged tomorrow, but will hopefully be able to stay on as a boarder for the next few days while Zeke is still here. We’re not sure how we’re going to handle this week between Zeke, Jesi, the rest of the kids and my work – but we’re pretty happy having these problems in the light of getting to keep Zeke.

Thanks for your calls and prayers so far – please don’t stop!

- Dave & Jesi