A Special Visit and a Loud Holler!

On October 10, 2010, in Julia's Journey, Personal, by Chris

Happy 10-10-10 people! Julia’s actual due date (the day before) came and went with little fanfare, and she is continuing to feed and grow well, albeit a little slowly. We are hoping that now that her feeding schedule has turned to a more on-demand cadence, her weight gain will be more robust. We are also looking forward to (hopefully) final visit and clean bill of health from the hematologist tomorrow.

The past several days have been punctuated with visits from some dear friends – many of them generously bringing a meal to ease the transition of Julia’s arrival. Jocelyn’s small group has been right at the forefront with some of the most amazing meal! It’s great to get some recipes that are out of the normal routine. I have to say that most of the offerings have been marvelous comfort food that is going to seriously impact my weight loss efforts (20 lbs. so far!).

But the most distinguished visitor we’ve had (for me, anyway) was my father. I gotta say that I didn’t know I would feel the pride that I did when Jocelyn put Julia into his arms. Bob is a guy that has a lot on his “resume of life” – husband of over fifty years, caregiver to his bride until her passing, father of four, cancer survivor – and now he can add another life to his legacy. Julia is his second granddaughter; and after watching his son marry later in life and being so supportive throughout, I felt an amazing sense of the weight of the moment as he cradled my daughter in his arms.

I hope you’ll indulge me with a bunch of pics of my dad and his granddaughter, but scroll down. There’s more!

Another big development is a change in Julia – something of a surprise, really. Since she was born, she’s been the picture of congeniality. Even the NICU staff loved her during her stay because she was a very quiet and amiable little girl. Of course, there were the cute little chirps and sometimes more insistent squeaks when she needed a bottle. It was only when she was in pain that you would hear her really use her pipes.

Here’s the deal: In the last twenty-four hours, Julia has found her holler! It started last night when she decided to let her sleeping parents know that she wanted food and right away! It has persisted on and off throughout the day – especially at feeding time. Who would have thought that our perfect little princess could generate the volume she does (yah – I know that’s a new dad talking!). It’s actually a pretty good sign considering her heart condition that she has some energy to burn and is willing to expend it! We continue to be hopeful for her as we look forward to a night punctuated with a howl or two from the nursery!

Okay – here we go. Jocelyn is putting her down for the night as I write this. Wish us luck!

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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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Best Laid Plans…

On October 2, 2010, in Julia's Journey, Personal, by Chris

Well, we thought we had all of the stars lined up, but our Julia has decided she’s not going to wait until her teens to drive us crazy. Before she was discharged, there was one hoop our girl needed to jump through. And she unfortunately ended up in “face plant” territory on this one. I’ll tell you the story ends well, but there’s a little delay in her going home.

Babies born prematurely (and especially those with Down Syndrome) can have all kinds of challenges when it comes to riding semi-upright in a car seat. They may not have proper muscle tone to hold their head up and keep their airway clear. As a result, they can experience a drop in their heart rate and oxygen saturation in the blood. So the American Academy of Pediatrics recommends a car seat test before discharge from the hospital.

We had brought our car seat in a couple of days before and were waiting for the test, and considering how well Julia was doing, the entire staff thought would be a perfunctory exercise. When we got to the NICU this morning, we found that she did not pass the test the night before and they needed to re-run it. The test consists of strapping her into the car seat and monitoring blood oxygen saturation. The standard is that she must maintain it at around 85% or better for at least an hour.

The nurse got her into the car seat (Julia wasn’t wild about that), and we watched as the number on a monitor go up and dip down – our attitudes in direct proportion to the number. We finally decided that we were stepping off of that roller coaster ride. We went down to the hospital’s atrium, had a Starbucks and prayed, giving the entire situation to God. His will and not our own – a particularly tough prayer to offer when it comes to your kid.

Bottom line: Her muscle tone is not yet developed enough to support her airway in an upright position, but the news isn’t all bad. She’ll be assessed overnight for a car bed that will provide a temporary fix until her situation rights itself. The only delay is that it’s a weekend discharge and it will take a little time to marshall all of the resources to make it happen. They have already assured us that there is a car bed available and we should be able to take her home and continue the adventure tomorrow.

It’s amazing how friends can come around to comfort through a disappointment. I sent a text message telling of the disappointing delay to some of our tribe and we got all kinds of responses – including an offer from a friend who has contacts with an ambulance service that could have provided a complimentary ride home (I thanked him, but pointed out that we couldn’t tie up an ambulance every time we needed to get the pediatrician). Perhaps the sweetest, though, was from our friend Marie:

Sorry – But she will be another day stronger and we have eternity to love her!

We have decided to take the long view on this one, knowing that Julia will be home – very soon – and this is just another twist in the adventure that God has us on. There will be many more like this in the months and years to come.

Sorry, sweetie – but it will be soon!

We’ll pick this up tomorrow, and I’m feeling there’s going to be a more satisfied ending to the day!

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Julia’s just over a week old and she’s already going to school. Grandma Nancy is a fantastic addition to the support system that has been surrounding our family. A nurse with 48 years’ experience, she has not taken the easy road into retirement. She is on the faculty at the School of Nursing at Texas A&M and recently lead a medical mission trip to the Dominican Republic.

Aside from her naturally calming role as a mom, perhaps the greatest asset Nancy brings to the table is her years of experience as a lactation consultant. Apparently, she has the home number for K. Jean Cotterman, a nationally known authority on the subject. This was a real Godsend for us, as getting Julia to feed from the breast has been quite a challenge.

It was not long (I figure it was less than twenty minutes after she hugged Jocelyn hello) before the consummate teacher and coach in Nancy came out. After surveying the situation for a few minutes, she offered a few adjustments to Jocelyn’s breastfeeding technique, encouraged her faithful efforts, and even offered a helping hand to get her started. School was definitely in session for our little girl and she was being put to work!

It really wasn’t long before Julia and Jocelyn started working together and daughter was drawing nutrition from mom. There is still a lot of learning that needs to happen, but they are well on their way.

The last 48 hours have really been a game changer for Julia’s progress and Jocelyn’s stress level – and school hasn’t even really begun. Not only are the mechanics of breastfeeding beginning to fall into place, Jocelyn’s sheer enjoyment of Julia has increased tenfold. It’s not just about getting nourishment into her body, but simply being together in the quiet give-and-take of relationship; and it’s been a joy to experience.

Case in point: whether she’s on the breast or the bottle, we’ve found that Julia likes to take a little break after suckling. She may even totally zone out and nap for a few minutes before taking another draw.

We never would have known that if we had remained task-focused on getting her the calories she needed to hit her discharge goals, because almost force-feeding her is a real possibility if we aren’t watchful. In the end, we had to slow down, not only to hear from other perspectives, but to let Julia communicate the best way for us to feed her.

The truth is, school’s in session for all of us. Jocelyn and I, like the generations of parents before us, are merging into the stream of wisdom that comes from hearing the good experience from trusted friends and family, along with simply slowing down and truly hearing the unique wisdom that our child wishes to offer us.

There is other exciting news: Julia is continuing to gain weight (over two ounces in three days!) and is currently weighing in at four pounds, fourteen ounces – a full five ounces over her birth weight. Her volume intake is continuing to trend upward and it seems that another hurdle before her homecoming has been cleared. She’s also maintaining her body temperature and will have no need for an incubator.

I was listening in on this morning’s rounds, where all of the doctors come together at the bedside to review cases. After hearing about Julia’s progress, the attending neonatologist (basically a tiny baby doctor) asked out loud, “Why haven’t we sent this baby home?” I gotta tell you that my heart skipped a beat when I heard that. There is still the issue of the blood platelets that will require close monitoring, but it is the consensus of the NICU team that it can be monitored on an outpatient basis and should resolve on its own. They want to get one more platelet count tomorrow morning, but as long as the results are not too low, the hematologist (blood specialist) will follow up with a more detailed treatment plan sometime next week.

So I’m glad you checked in today. I wanted you to get here before I told her the good news:

Hey Julia – Guess what? You’re coming home with Mama and Daddy tomorrow!

Oh, yeah. There’s going to be a new adventure beginning tomorrow around noon. We’re taking our little girl home and school will really be in session!

I will be posting pics of the homecoming tomorrow! Stay tuned!

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