More Wins and New Concerns

On January 20, 2011, in Julia's Journey, Personal, by Chris

Hey everyone –

Julia had a very restful night and continued to exceed the team’s expectations in terms of her feeding. I got in at around 6:45am and she was still sleeping peacefully, but soon awoke and was ready for a little more. She took two ounces with no problem and dropped back off to sleep. She might have taken more, but we decided not to tax her tummy too much early on. Nonetheless, the team was very pleased with her feed.

There’s also another marvelous development in that she was taken off the pacemaker as a trial and her heart “flew solo” for the first time with a good sinus rhythm. Dr. Walters was pleasantly surprised at this new development, and is cautiously optimistic about the long term. He left the pacemaker on sensing mode at a baseline level to take up the slack should her heart rate dip below a low threshold, which may very well happen throughout the day. Julia has to “prove herself” over the next few days before he is going to be comfortable taking her off the pacemaker and removing the wires.

A couple of new concerns have arisen with a spike in her temperature overnight and a depressed platelet count. Those of you who have been following the blog for a while may remember the platelet issue has come up before. Children with Down Syndrome have a tendency for a condition called thrombocytopenia, which basically means a low platelet count. They have given her a transfusion, which will hopefully give her the “jump start” she needs to produce her own. The team also wants her to have them so that any bleeding can be controlled when they begin removing drainage tubes (tentatively scheduled to start tomorrow). We’ll stay watchful in the meantime.

Fevers are normal in the first forty-eight hours after surgery, but a later onset is a source of concern. They took blood and urine cultures, but the results will take 24 hours and are not yet back. Fever can have several causes and they are exploring all of them. The wound shows no sign of infection, so that’s good news. There may also be excess fluid in her lungs that she hasn’t coughed up, but she is still draining from her chest tubes a bit and it will be uncomfortable for her to vigorously cough with them still in place. The nursing staff will spend some time working on that, including cupping her chest to break loose the secretions and some vigorous suction that will induce the cough (and make her pretty cranky, we’re told). All in all, we are still on a good track.

I also have a special note to all of you who are praying and thinking good thoughts for Julia: Dr. Walters is aware and very appreciative of your good work. He told me that he and his wife were praying this morning that Julia’s heart rhythm would resolve itself, so he clearly understands the power and necessity of prayer. He specifically asked me to ask you to pray for clarity on the part of the team about how to deal with the fever. Obviously, the issue of the platelets and the pacemaker are sub-concerns that could use prayer focus as well. You have his personal thanks!

Stay tuned for more developments and the results of the day’s plan on a post sometime this evening. Thanks again for your concern and prayers, and celebrate with us Julia’s four month birthday!

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Big Strides

On January 19, 2011, in Julia's Journey, Personal, by Chris

Hey everyone – just a quick note of celebration tonight! We hit a big milestone in Julia’s recovery, and no one would have convinced me last night the kind of progress we have seen today. Notice anything different? If you don’t, I’m happy to report that as of 12:45 this afternoon, Julia is off the ventilator and breathing on her own!

Like I said, there were many clinical strategies in the removal of a ventilation tube, and I wish I could describe the ins and outs of and intricate decision making that took place. In the end, it was pretty straightforward: Take her off the sedative, reduce the vent settings to a minimum, let her get wiggly, make sure her blood chemistry was stable and pull out the tube. Simple! Yeah, right. Let’s just say that I’m glad it wasn’t me making the decision!

Both Jocelyn and I were a little awestruck at how… routine it seemed. The medical staff prepared us that she might be a little raspy and cranky when the tube was finally removed as she re-acclimated to breathing on her own. If she wasn’t tolerating the lower settings, she may have slipped into distress and would have to have been re-sedated. In the end, she was quiet and reasonably comfortable through the whole thing. It was, in the words of our nurse, Megan, “an easy one.” Thank God for “easy ones”.

Our friend, Ken, who pastors an Episcopal congregation in Rochester Hills, came by to pray for Julia. Turns out that it was a prayer of thanksgiving that our girl is breathing on her own! There are still concerns with her heart rhythm that I assume we’ll be tackling tomorrow, but the lower settings on the pacemaker that Dr. Walters had dialed in this morning seem to be holding.

The team has pulled Julia off of most of the intravenous meds for blood pressure and fluid retention, so they may pull a couple more tubes tomorrow. And as an added bonus, Julia started feeding on her own today!

We still have a long way to go, but we have a lot to celebrate today. Celebrate with us!

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Eight is Great! Celebrate!

On January 7, 2011, in Julia's Journey, Personal, by Chris

Hey everyone – just a short note of celebration! We took Julia into Dr. Weinhouse for her last consult before surgery and she is continuing to do great. She gained another seven ounces, which far exceeded our wildest hopes and put her well past the eight pound milestone. Like I said a week or two ago, we are still pretty mystified at how well she is doing and thankful how God is sustaining her through your prayers. We see stories on various online discussion groups of feeding problems and gastric tubes and realize how truly blessed we are. Thanks again for your concern and prayers; and celebrate with us!

And by the way… don’t let all the angelic pics on the website fool you. This little girl can be crazy making sometimes!

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Christmas Greetings from the Farm

On December 25, 2010, in Life, Personal, by Chris

It’s Christmas Eve at the farm on Willow Road, and the house is at rest after a busy day of visits, celebration meals, and a lot of calls on Skype to our loved ones as far flung as the U.K.

We also had the annual stream of neighbors – some of whom you’ve been introduced to in years past – bearing the Christmas gifts that will put us in a sugar coma for weeks. But this year, I detected that their motivations were somehow different. It was as if they came bearing these gifts as the cover charge to visit with my three-month-old daughter. I guess I have to face it: the process has begun transforming my wife and I from “Chris and Jocelyn” to “Julia’s parents.”

Nonetheless, I love our time here on the farm. It’s a quiet, simple reminder amid frenetic pace of normal life that the things that really matter are family, friends, … oh yeah, and peanut brittle.

In the afternoon calm between visits, I took a walk down the eastern lane that borders the property. The snow has covered the fields, allowing only a bit of corn stubble to peek through the blanket of white.

There’s a special quality to the air in midwinter, especially when it’s moist and calm like this afternoon. It has almost a dampening effect that covers the land in silence. All I could hear was the snow under my footfalls. As the land dipped, the barns and the rooftops slipped from view; and for that moment, all I saw around me were fields and fencerows, frozen marsh and the russet gray of the trees.

I quietly topped the crest of a hill in the waning light of the afternoon and stopped to see deer striding cautiously out from the woodlot to dig for the shoots of the tilling radishes planted in the fallow of Grandma’s Field. A buck and four doe had braved the cold (and the hunters) to tenaciously hunt for the life that they instinctively knew lay beneath the veneer of cold. I watched, almost hypnotized, as they moved through their cycle of survival – dig, feed, pause, watch for danger – until the cold forced me to turn back for the warmth of the house.

It has long been a tradition for me to sit in the dark of the farmhouse, look back on the year and offer some personal perspective. Well, the year has forced me to exercise some emotional muscles that have never been tapped before. With our daughter Julia’s birth and scary diagnoses of Down Syndrome and a heart defect, Jocelyn and I have seen extremes of excitement, despair, and utter terror that have left us pretty exhausted.

Our family will soon gather to mourn the loss of my Uncle Jim, who died suddenly this Tuesday. I prayed with a friend in the U.K. who has watched his father languish in hospital for three months, only now seeing a glimmer of vitality that brings small hope for recovery. The danger and sadness of this world – in all of its fragility – is real.

But as I sit here with my laptop open and the entire house sleeping, I honestly can’t get those silly deer out of my mind. Despite the danger and any visible sign of anything life-giving, it is their desperation for life that coaxes them to take the risk, step out of the safety of the trees and scratch at the cold ground in search of it.

Death and decay and suffering try to crush anything beautiful and redeeming from this world; but life and the Love that spoke it into being stubbornly push back, awaiting discovery by those who are looking for it.

Somehow (and for reasons that still leave me dumbfounded), God pushed past all of our profound shortcomings, our icy veneer of deceit and self-protection, and found something beautiful and valuable – something worth rescuing. A risk was taken and an Envoy was dispatched to begin and seal the rescue that we – I – so desperately needed. Those whose lives have been transformed by that beauty are called to do the same. Take the risk. Find the Life amid life’s pain.

I find it every day in the beauty of my wife comforting my daughter through her heart-wrenching bouts of colic and steels her heart for the coming surgery. I find it in how our family is drawn together in the sadness of loss to celebrate the life that was well lived. I am humbled as I see friends work tirelessly to leverage their talents for the good of others – from giving Indian orphans a meal and an education to those brave souls still searching out a way forward for the disenfranchised in Detroit.

Whether or not you believe in this whole Jesus thing, rest well in the love that abounds this season – whether or not you see it at first glance. Let that love invade and change your heart, and out of an overflow of that changed heart, represent it well to others.

I give God thanks for all that you do, and wish you all the best for Christmas.

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Dare to Ask

On December 21, 2010, in Julia's Journey, Personal, by Chris

If you’ve been following our story over the past couple of weeks, you’ll know that we’ve been dealing with kind of a roller-coaster regarding her weight gain. It had come to the point last week that were resigning ourselves to the idea that her heart condition was making her progressively more tired and unable to feed well. As a result, we wouldn’t be seeing significant weight gain until after her surgery.

Interesting how things continue to change. In the last couple of days, we saw her come alive again and show much more interest in eating. It was still not where we needed to be according to what the specialists in the NICU were suggesting (120-140 kcal/kg-day – the math is convoluted, but you get the hang of it quickly), but certainly an encouragement.

We have promised ourselves that we would try not to let our spirits rise and fall over the number a scale was telling us about our daughter. But it’s really, really hard not to do that when your singular focus is feeding volume and weight gain. I guess it’s just human nature to want some kind of feedback on your kid’s progress and our reductionistic minds simply tend to boil it down to one or two metrics.

Despite those promises, Jocelyn got a number in her head last night as we prepared for bed and for this morning’s cardiologist’s consult. “We need to pray that she makes it to three pounds over her birth weight tomorrow.” I did the math and it seemed like a tall order, considering the paltry weight gain over the past couple of weeks. In fact, in the cold light of day, I could see no practical reason that our hopes could be fulfilled.

But before we fell asleep at the end of the day, we asked God for the four ounces anyway. I’ll not get into the theological conundrums of whether this whole thing is pre-scripted or whether God actually listens to our prayers and integrates them into the story. Suffice it to say, we dared to ask and Providence… provided. And with a whole half ounce to spare.

So we have two big milestones to celebrate today! Our Julia is three months old and is now a full three pounds over her birth weight! We also shared with Dr. Weinhouse the story of our Ebenezer stone and celebrated the reality that even now, God continues to help us.

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