Okay – a lot of you parents who had jaundiced kids do light therapy are rolling your eyes at the cheap play on words right now. Do me a solid, here, people. I’ve had maybe ten good hours’ sleep in the last 72. I’m running a little low on the repartee and am basically down to two syllables or less most of the time.

The good news is that Jocelyn is recovering well from the surgery and dividing time between being there for Julia and spending some time resting. It’s a fine balance that takes a little trial and error. Push too hard taking care of the child and you delay your own recovery. We have constant reassurance from the staff that this is a normal tension, but suggestions of what side to bias on depend on what floor of the hospital we’re on – 5th floor NICU or 6th floor Post-Partum.

We have been very focused on getting Julia out of the NICU and that requires three things: Breathing, Pooping & Eating. The first two, she seems to have down pat. She is completely weaned off of the oxygen and for two days has been thriving on room air. And as far as the pooping, well, some things are better off left unrecorded.

Our cardiology team has told us that we are in the “honeymoon stage” for kids with AVSD. It seems that babies’ lungs are naturally hypertensive and provide back pressure that mitigates the effects of the septal defect and the blood that can be misrouted. The symptoms start to appear 2-8 weeks later after the back pressure reduces. Nonetheless, the cardiology team has told us that her heart is not keeping her from going home! Big time hurdle has been cleared!

There are still other challenges to clear, though. The jaundice (a common condition for premature babies) makes her a little more sleepy; and even though she is SO adorable when she’s sleeping, it makes her a little less interested when it comes to feeding. Everyone on staff has been impressed with Jocelyn’s determination and drive to breastfeed, and some work with a lactation specialist has given her great tools to practice on over the weekend. Bottom line, we’re hopeful!

The days have been divided up into rest, pump, feed, repeat. I gotta say, nobody can calm cranky Julia like her momma. So we’ve spent a lot of time hanging out with Julia in the NICU…

…aaand begun the process of saving up for her college fund.

There are a lot of thoughts rolling around in my head about the strange, disturbing, beautiful, cosmic way that parents and kids are knitted together, but like I said, sleep deprivation has taken a toll on my writerly discernment. So I’ll drag out those ideas and think them through later. In the meantime, I have some sleep to catch up on.

Night night, sweetheart. We love you.

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Although remnants of the hurricane of the same name are breaking up in the mid-Atlantic, Hurricane Julia Paige Cook hit William Beaumont Hospital at 6:06pm last night as a Category 5 baby. And the day started so… normally.

We had had a relatively quiet weekend (well, Jocelyn was on her modified bed rest, and I was running my bag off keeping her quiet and fed and knocking a few things off the ‘to do’ list). By Monday, I was back to going from meeting to meeting and got a call from Jocelyn, who was about to go to into a regularly scheduled Non-stress Test (NST). These had become pretty routine and boring, as Julia always passed them with flying colors; but there was always the spectre of the blood pressure reading that had put Jocelyn on the bed rest regimen in the first place.

Jocelyn needed prayer and she asked for it. So we took a moment over the phone, held out our hands, and gave the entire situation to our Creator. Both she and I are activist by nature and have a tough time letting go of things that we have in our heads as “our responsibility”. It was good – felt different somehow.

I wish I could have said the same for Julia’s NST. She just didn’t seem to be as responsive, according to the squiggly lines that the monitoring machine makes. And this was after days of the baby kicking and Jocelyn called me later with the news, seeming more annoyed than afraid. Back to Beaumont for a Biophysical Profile – “just a precaution,” they said. Our emotions had been beaten to death with “just a precaution” for over a month. Even one of our obstetrics team sent Jocelyn home the week before, saying it was their over-reaction that was stressing her out and spiking her blood pressure.

But the BPP was showing the same problems that the NST was – and worse. Somehow, most of the amniotic fluid was gone, making it that much tougher for Julia to move around. A check of the umbilical cord showed that the blood was flowing in the wrong direction. Vital nutrients were not getting to Julia, further investigation showed that she had stopped growing. In a matter of 72 hours, she had overstayed her welcome in my wife’s womb. It was time to get her out of there.

I was at the hospital by 4:30pm and was amazed at the calm that both of us had through the whole thing. The decision was made that there was no time to induce; Caesarean Section (a procedure we had fought hard to avoid) was clearly the only way forward.

Things moved very quickly after that. Lots of questions from staff, packing of belongings, coaching on how the anesthesia works. My cell phone felt hot in my hand as I madly texted and called as many family and friends as I could before I was put in gowns and brought to the doors outside the surgical suite. There were several tense minutes of nervous goofing around with the Labor & Delivery staff as they prepared Jocelyn. That’s normal. They get everything ready, get the mother good and numb, bring the dad in and get started. The anesthesiologist stepped out an motioned me over.

“Your wife’s heart rate is double what it should be. You need to go in and calm her down.”

So okay. No pressure.

I go in, and our capable OB is already at work and the place is really, really tense. I don’t pretend to have a lot of experience with surgery, but something had changed in the minutes preceding my arrival. I sat down at Jocelyn’s head with a drape between us and the surgery. I saw the stress on my wife’s face; and summoning everything I had, I took her back to a beach on an island in the Aegean Sea where we took our summer vacation (before you ask how we got there, let’s just say I got people). I painted a picture of the warm sand and languid waves lapping up on the shore, azure blue skies and utter relaxation in the shade.

It worked! Jocelyn’s heart rate stabilized, and I started writing my proposal in my head of how I could contract my services to the anesthesia staff. And then came the scariest 90 seconds of my life.

The obstetrician’s voice broke into the din of beeps and routine alarms from the monitors: “I need the attending in here RIGHT NOW. I need assistance RIGHT NOW.”

Jocelyn had heard the voice as well – I saw the stress in her face again.

And for just a few moments, I forgot what language I speak. The words of comfort simply wouldn’t come. Somewhere in that horrific 90 seconds, I’m quite sure I said something, but for all I know I could have been reading from the Oakland County Yellow Pages.

And then three of the most beautiful words I’ve ever heard came from the other side of the drape: “Okay. Got it.” The energy and anxiety in the room dropped, and the squeal of my child filled my ears. I simply wanted to collapse on the inside, but I was so curious on how this little life was doing.

I felt like an idiot with my beleaguered questions from the other side of the drape while so much reality was happening just outside my field of view. Is she moving? Is she getting pink? I was embarrassed to break their concentration on the task at hand. It was several minutes before they wheeled our Julia for a look as they took her up to Neonatal Intensive Care (NICU – you’ll be hearing that one a lot).

Are you ready for the grand reveal? Okay – here goes:

Reminiscent of an old guy in a stocking cap? I thought so too. But give her a chance to get cleaned up.

So here’s the rest of the story: Jocelyn and Julia came through the whole thing very well. The next couple hours (for me) were spent running between the NICU and Post-Op where Jocelyn was recovering from the surgery. Joce is doing great, although tomorrow will be a little tougher, pain-wise. She has been an absolute lioness through this – even posting her insightful opinion on a recent National Public Radio focus earlier in the day on the choices parents make to test or not to test for Down Syndrome.

We’ve had several visitors and Julia’s had some tests to see how her heart is doing (freaky pic, I know, but it was a simple electrocardiogram).

Many from our tribe have come in to pray for her and our family – what a blessing.

Here’s the latest on Julia: With God’s mercy, she’s doing simply fantastic! We are focused mostly on her physical well being at the moment. An echocardiogram confirmed what we already knew: an uncomplicated Atrioventricular Septal Defect (aka AV Canal Defect. Google it – you’ll find lots of information) of about 12 mm that experts tell us can be fixed with one surgical procedure. But the size and symmetry of the heart are, in the words of Julia’s cardiologist, “beautiful”.

She’s breathing on her own and the NICU team has weaned her off of the oxygen that they were giving her. She’s tolerating room air and doing a great job keeping the oxygen saturation in her blood at a healthy level. We’ve begun the process of teaching her how to breastfeed, and things are looking promising.

For those of you who have been following the story for a while, we really don’t know the extent of the Down Syndrome. A lot of that is going to be revealed as she develops. But I gotta tell ya, part of me wants to leave the dark of this hospital room as my wife sleeps to be with my daughter, Julia Paige. My heart is already fit to break for the love I have for her.

I think you’ll like her when you meet her. Jocelyn and I look forward to introducing you soon.

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