One at the NICU and One at Home

On September 25, 2010, in Julia's Journey, Personal, by Chris

Big day yesterday for the Cook family. My wife came home – here’s a pic of her feeling the sun on her face for the first time in four days. She had her incision staples (yes, staples) removed early Friday morning. There was a little apprehension on both our parts, thinking that it would be more painful removing metal than it would silk sutures. But in less than two minutes, they were gone and she was ready for Steri-strips. In the meantime, I was looking for the red “That Was Easy” button (pun totally intended).

We went down to see Julia after her overnight Blue Light treatment, and she looked like a different kid. Her color was much better, she was more alert and active and (okay, guys – breastfeeding talk ahead) she latched! I sent a text message of the good news to women of our families and you would have thought I had announced an 80% off shoe department clearance sale at Nordstrom. I have to resort to humor just because I’m a little awed by the whole thing. I really do appreciate – but have the self-awareness to say that I will never totally understand – the kinship that binds all women together when it comes to childbearing and breastfeeding. Kind of like the male camaraderie surrounding the Superbowl…

No. That’s not it.

Give me an uninterrupted year or two under a tree and I might come up with something. All I can say now is that it truly is beautiful and indescribable. And all the sistas say, “Amen.”

We were thinking that we might be able to stay one more night on what is called “Maternal Stay-over” where we would have had access to the hospital room to crash in between feedings. But we found out that if the room was needed, we would have been asked to leave immediately – even if it was 3am. In the end, we decided it was best to sleep in our own bed. And leave our kid where she needed to stay.

That created a lot of really complicated feelings in both Mom and Dad. It was a very, very weird feeling leaving a part of you behind in the hospital. We had known going in that Julia was going to stay behind and had each prepared in our own way for the reality of it. My sister, Lauren, told me that she needed actual physical support from her husband to leave her son in the hospital after giving birth. But now the inevitable was right up in our faces.

So we did the best we could. The flurry of activity before discharge – especially procuring the hospital grade breast pump – got us focused on the tasks instead of the emotions behind them. I asked an especially intimate circle of men to pray for me as I made myself available to whatever my wife needed from me. One texted back to me with what he heard:

Be encouraged, this is good for the two of you.

No truer words could be spoken – even though the thought of it hurts. We’re going to be leaving our little girl many, many times in her life; and she will eventually leave us. It didn’t make the keen pain of the moment recede, but it did give it a little context. Some company and assistance from good friends that night – along with Buddy’s pizza, a chick flick and two milk runs to the hospital (11pm and 4:30am) by Dad while Mom got some shut-eye kept us occupied and the “My Baby’s in the NICU” blues somewhat at bay. Along with complete exhaustion!

The morning brought a new rhythm (Pump – Drive – Nurse – Repeat) but also some much appreciated reinforcements to this beleaguered little outpost. Jocelyn’s sister Jen drove up from Dayton to bring some much needed support in the form of lovingly prepared food, a womanly perspective that I simply cannot give, and the fun of having my sister-in-law around. She is the consummate child-raising pro and helped Jocelyn out as we got Julia accustomed to breastfeeding. Baby is doing well – we were able to do a full feeding from Mom today. We still use the bottle sometimes, but only when we don’t want to waste the good stuff that Mom is producing.

Jen will be leaving us tomorrow, but there will be other reinforcements that you will be meeting as we go, and great support from our community. As I am writing this in the dim half-light of the nightshift NICU, I am humbly watching my sister-in-law quietly dozing after a day of giving it her all. The late night milk runs, the breast feeding frustrations, and the messy house is all worth it when I watch my little girl sleeping peacefully, and it makes the pain of our time apart a little less keen.

Jocelyn has produced enough breast milk tonight to get Julia through the night time feedings, so Dad will not have to jump in the car for a milk run tonight. Thanks sweetie! We have the first truly restful night in front of us!

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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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Bring It.

On September 12, 2010, in Life, Personal, by Chris

I launched this site some five months ago and have had an itch in my head ever since. I had always promised myself, having been an avid peruser of writings by authors far smarter and more articulate, that I would not add to the noise – in print or online – unless I had something truly unique to say.

Fact of the matter is, I’m still waiting. I’ve always been something of a perfectionist, never wanting to do anything unless it measured up to my narcissistic standard of “world class”. But sometimes, you just have to start and cut yourself a little slack as you push ahead.

There was a bigger reason for my delay in beginning this blog, however: I didn’t want to begin while my world felt like it was imploding. Let me give you a little of the backstory.

Almost two years ago (722 days, to be exact), I married a woman that I was convinced did not exist. Jocelyn was the wife that God had planned for me, and I still marvel at the fact that she chose me! Only a year before our wedding, we had not met and I was in the process of making peace with the possibility that, at forty-one years old, God’s plan for me was a life of singleness.

Jocelyn and I spent the next eighteen months in relative wedded bliss, even beating the prevailing attitude that the first year of marriage is the toughest. We were so well matched on so many different levels that our worst disagreement wouldn’t have made it out of the bottom tenth percentile of many couples. We were even navigating through the first trimester of her pregnancy and the attendant waves of nausea that were more often the rule than the exception in Jocelyn’s case.

And then there was the day that it all went sideways. March 24th of this year, we went in for a routine ultrasound meant to eliminate the possibility of a problem with the pregnancy. We came away with something that we frankly hadn’t signed up for. There was an anomaly in the thickness of the Nuchal Fold (called a “soft marker”) that points to a statistically higher possibility of Down Syndrome. The doctors suggested more testing to confirm or refute the results; and after a lot of prayer and soul searching, we agreed to an amniocentesis a few weeks later.

The word from the medical community quickly went from “there is an elevated possibility of a problem” to “we’re pretty darned sure there’s a problem”. During the ultrasound for the amnio, the imaging specialist found a heart defect and the genetic test results eventually confirmed Trisome 21 – a third DNA strand attached to the more typical 21st pair of 23 chromosomes.

I have had only a few screaming matches in my walk with God. They are done in solitude and usually leave my vocal cords pretty raw, but I figure that God wants it all – the good, the bad and the very, very ugly. My only pointed question to him that sunny spring day when we got the preliminary (and normally pretty darned accurate) results was:

What.          Are.          You.          Doing?

I got no (audible) answer that day, but my mind has since been wrestling with the brief words I’ve caught in my moments of reflection and from those prophetic oracles that come from my tribe of trusted friends and confidants. Here’s what I’ve come up with so far:

For over five years, I’ve overseen the Care initiatives at a church of over ten thousand people. I sit on the board of an organization in India that reaches out to the poorest of the poor and currently feeds, houses and educates over two hundred kids who would otherwise have to survive a life of petty crime and prostitution. I’ve seen my share of sad stories. My message to people in pain is hopefully not overly simplistic, and hopefully delivered humbly:

The world needs you.

We need you to move into this challenge and experience the full spectrum of emotion that God has for you in it. We need you to approach this season with the attitude of a student and not a victim. We need you to surround yourself with a trusted community who can encourage and sustain you through the discomfort that will undoubtedly come. This season may be a short one or may last a lifetime; but we will need you to plumb the depths of it, find beauty even in the midst of the struggle and add your stories to the narrative of the One who redeems the world’s brokenness. And in so doing, speak with a credibility that can only be had through suffering a broken world well, knowing that this is only the beginning of a much greater adventure.

That, or something very much like it, is what I tell people in crisis. I wonder if God is leading Jocelyn and I into this wanting me to start putting my money where my mouth is.

So here I sit in the rocking chair of my daughter Julia’s room as my wife takes a much needed nap from the fatigue of the ninth month of pregnancy. We are only a few weeks away from truly knowing the results of God’s craftsmanship. Even now, we still sit in the tension between knowing that God could re-knit our daughter right down to her DNA, or he could choose to do something even greater in us (and in the world) through a little girl with Down Syndrome. In the end, my deepest conviction is that this kid is going to have a massive impact for good.

Worries of the “ninth-month-of-pregnancy” roller coaster and the financial, medical and emotional implications of Julia’s heart defect still catch me by surprise sometimes. But here in the cool of this September afternoon, I can be thankful that Ultimate Good has captured my heart and continues to change the questions I ask of eternity. Today, with still a little fear, but with growing confidence in the God who pursues me, I say:

Bring it.

And I thank you for joining our little family on the new adventure that God has for us.

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