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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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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UPDATED: Prayin’ for Platelets

On September 26, 2010, in Julia's Journey, Personal, by Chris

 

*** Update: Julia had her transfusion and early lab tests after are promising! Her platelet count went from 17 (quite dangerous) to 145 – well toward the normal range. Further monitoring will be required, but this is a very good first step! Thank you so much for your prayers! ***

Hey Gang –

There is a little wrinkle in a day of otherwise good news that could use your prayers and good thoughts. After a couple of great breastfeeding sessions today, I noticed a furrowed brow on our nurse, Laurie. She came over to us and said that Julia’s platelet count was down.

This important blood clotting component has been suppressed since Julia was born. I remember hearing mentions of it as I listened in on doctor’s rounds over the past few days. But her platelet count had now dipped to a level where intervention was required. We spoke with the doctor and he is not yet concerned about the origin of the issue, but is more focused on avoiding the complications that low platelets can bring.

The cause is most likely a relatively benign disagreement between Mom & Julia’s blood type that will work itself out. There are, however, rarer possibilities that are just no fun to think about at the present moment. Additionally, this could be connected to Julia’s Down Syndrome.

Right now, a transfusion of platelets to fortify Julia’s flagging supply is in order. It’s a simple band-aid for right now, but that may be all that’s needed. Of course, we have to wait over the next few days to see if the problem sorts itself out or if further intervention is warranted.

In the meantime, we have given this situation to our Creator and Redeemer, asking Him to do what he has done before: create more platelets and redeem the disconnect in Julia’s body that is keeping that from happening. Jocelyn and I are fine – well, not quite fine. But we are weathering this well, knowing that there would be a few dips in the road as we navigated this.

By the way – don’t be too disturbed by the pic. It was a routine weigh-in last night and Julia was a little cranky that the nurse had taken her out of her nice, warm jammies. The good news is that her weight is up!

Thanks for your prayer and support on this!

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