Grandma Nancy’s in Town

On September 29, 2010, in Life, Personal, by Chris

8:15 pm: Nancy Sue Torian-Goodman, mother of my wife Jocelyn and grandmother of my daughter Julia, landed on the fifth floor of the South Tower at William Beaumont Hospital – Royal Oak. Words cannot describe how everything feels like it’s coming together. For the first time in over a week, I have seen my wife totally… Relax.

Within a few minutes of arriving, Nancy’s natural teaching gift came out; and in one short coaching session, there was a quantum improvement in the breastfeeding interaction between Jocelyn and Julia.

Even now as I prepare for bed, Nancy and Jocelyn are in the baby’s room and the coaching and learning continues. And I know that our family is truly, truly blessed. Feels like the cavalry has arrived.

There’s still a lot of work to do, and the expertise, concern and professionalism of the hospital staff has been nothing short of magnificent. But in the past few hours, I have been reminded that there is stuff only a mom can do.

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Sorry for the lateness of this update. I’ve been choosing sleep over creativity lately; but I did want to give you a thumbnail sketch of the goings on over the last couple of days. The good news is that although Julia’s platelets are still an issue, the consensus seems to be that it is a transient thing. She may require further transfusions, but apparently these issues eventually work themselves out and all she’ll need is a little “top-off” once in a while.

I wanted to give thanks to the women who made the burden of the last few days a little lighter (and certainly saner). Robyn ran interference with our fragile emotions on Jocelyn’s discharge day when we had to leave Julia in the NICU. The weekend visit with Aunt Jennifer – Jocelyn’s sister – went great and she did her best to load us up with marvelous, carb-laden food and made quick work of our laundry. Jo-Ann is a close family friend and encourager of Jocelyn’s and took over when Jen headed back to Dayton on Sunday. Both took time from work and family to do something I simply could not. They provided experience and context to Jocelyn and a necessary back-stop against the mass of information and advice coming at her. There are no finer friends than those who come when you need them – even when it’s inconvenient. Jennifer and Jo-Ann are pictured below.

A lot has happened in the last couple of days. Julia has been moved out of an incubator and into a “big girl bed”. The goal is for her to maintain her body temperature for a minimum of 48 hours, and another hurdle for bringing her home will be cleared. They have also removed her intravenous fluids, so the only way she is getting nourishment is the natural way – by the breast or the bottle.

We had a consultation with a lactation specialist, neo-natologist and a pediatric cardiologist today and basically have our marching orders. The number one goal (once the body temp thing is assured) is taking advantage of the “honeymoon period” I mentioned in a previous post where Julia has enough energy to feed and grow. Calories are number one here, and goals have been set to make sure that happens – even to the point of supplementing with fortified formula when Mom’s milk supply can’t provide it. Volume is also a priority. Julia’s belly is only so big and can only take so much. A plan for a baseline of just under an ounce per feeding, with a goal of going over that as soon as possible.

Julia is happy to take nourishment from the bottle, but a little lazy when it comes to taking it from Mom. Coaching and encouragement from Maria, our lactation specialist has helped. We also have another secret weapon coming into Detroit Metro Airport this afternoon: Grandma Nancy – a labor and delivery nurse with forty years’ experience, lactation consultant, and professor of nursing at Texas A & M. When Grandma comes to town, little Julia ain’t gonna know what hit her!

Bottom line, we are hearing a shift in tone from the medical staff – from optimism of how well she’s doing to a focus on getting her growing and thriving as soon as possible. It’s encouraging and a little chilling at the same time. We’ve moved from simply clinging to life to the new challenge of preparing for the oncoming surgery and the tougher days in between.

And Happy Birthday to my sister Lauren! Sorry this is the best I could do for a b-day card. Can’t wait to see you next month!

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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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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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