So Far, So Good…

On October 7, 2010, in Julia's Journey, Personal, by Chris

I took a couple of days off, putting down my camera and computer, and simply enjoyed the new addition to the family. A new rhythm is beginning to develop in the house, and I can’t express how marvelous it is to have Julia home. There is not a lot of sleep; we just haven’t gotten the hang of it yet. But there is the joy of not having to schlep to the NICU twice a day; and knowing that, for now, our daughter is safe.

Not that we are not spending time with doctors. It is amazing the crush of appointments our little girl has been a part of. But here is where I’m glad to give you some very encouraging news: Julia had an appointment with a blood specialist regarding her platelet condition, who told us that her count had almost doubled since the last blood sample. This is great news, since we have some evidence now that the whatever was destroying her platelets is beginning to resolve itself. We’ll need to take another blood count on Monday, but we felt like this was a great win and one thing we can take off our list of concerns!

Perhaps the most encouragement came from our meeting with Dr. Elliot Weinhouse, a specialist in pediatric cardiology. We first met him a few months ago at Julia’s multidisciplinary consult (a collective meeting with all of the disciplines surrounding Jocelyn’s pregnancy and Julia’s heart and genetic condition). I have met him a few times since then and have been impressed with his deep concern not only for the child, but for the well-being of the parents as well. His regard for life can only be described as… reverence. These are more than cases for him, as evidenced by the pictures of all of the children he has treated over the years that cover all four walls of his office. In our first meeting with him in June, he used Julia’s name without our prompting him; and from that moment, his stock went way, way up in our minds.

Julia went to meet with Dr. Weinhouse today for an echocardiogram (basically an ultrasound of the heart) and a consult on her situation. An Orthodox Jewish rabbi in his off-hours (I believe), he spoke in glowing terms of the essential beauty of the structure of Julia’s heart, despite the malformation that was again confirmed in the ultrasound. He described her ventricles – the lower chambers and the area of primary concern – as symmetrical and sound. The blood vessels entering and exiting are well formed and free of defect, and the conjoined valve that will eventually be separated is sealing very well.

From a symptomatic standpoint, Julia is showing no signs of distress in her breathing and none of the discoloration or feeding issues that one would expect. We were especially encouraged when Jocelyn noticed one of the notes on his chart: “So far, so good.”

The game between now and the surgery is a race to a body weight of eight and a half pounds or so before the symptoms manifest themselves to the point of danger to her life. The ugly truth is that without intervention, Julia is on a slow boat to congestive heart failure – a term that is not quite as scary as it was. The process will be a slow one, and delayed by short-term drug intervention. But we have our marching orders: Get this kid to eight or nine pounds, and surgery can proceed most safely. If you are the praying type, please ask our Creator for a long delay in the symptoms so that Julia’s soul can remember as little discomfort and distress as possible.

On a more personal note, fatherhood is beginning to settle in on yours truly. I carried my daughter today through the examination – from the weigh-in through the echocardiogram to the EKG. I have heard her squawk in indignation at the pokes and prods by the NICU staff and was beginning to feel a little less sensitive to them. But this morning I was thunderstruck when I saw tears in my daughter’s eyes for the first time as the technician pulled off the leads of the EKG.

Amazingly, after everything that we have been through thus far, today was the first time I cried for my daughter.

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Homegoing

On October 3, 2010, in Julia's Journey, Personal, by Chris

It amazes me that a child that was watched and nurtured by a team of highly trained health professionals has now been entrusted to a clueless white guy. It’s probably mitigated by the fact that he has a very attentive wife and a registered nurse mother-in-law with 40+ years’ experience in his corner. Yeah, that’s it. It’ll be hard for him to screw this up.

Thirteen days, eighteen hours and fourteen minutes after her birth, Miss Julia Paige Cook greeted the world outside William Beaumont Hospital. Turns out she didn’t need a car bed after all and we took her out in the car seat we came in with. She has lots of doctors’ appointments between now and her heart surgery; but for today, our family is together and at peace.

I think the pics say it all…

Thanks for following us through this part of the journey. There will be much, much more to come. I’m going to go kiss my baby and thank our Creator for the way He has helped us thus far. And the future? I say…

Bring it.

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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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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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