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.

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?