The joke

Ashton Kutcher hasn’t got anything on us. No TV show could punk us like this last year has. I’m almost too weary & discouraged to write, but this is part of our story and it’s my mission to document it all.
David is back in the hospital. He has enterocolitis again. He’s such a happy, calm baby if he’s even a little fussy, something’s wrong. He’s been fussy since Wednesday.
I made the decision to go to the “other” hospital this time. Even if the diagnosis is the same, there’s a certain peace of mind that comes with a second opinion. This may finally be the beginning of the end. This hospital stay may be the one that gets it all figured out. Or, it may be just another stop on this life journey we didn’t ask for. David’s life may be spent mostly in hospitals. Right now, we wait. And wait. And wait.

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The thankfulness

I’ve been honest about how tough this year has been for us. 2013 has brought us more surprises, challenges, pains & heartache than we were remotely prepared for. But today we are thankful; so, so thankful. We are together, we are in our warm house & have food in the oven. We are blessed.

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The family

He’s home, he’s home, he’s home! We’ve done this once before & know how fleeting it can be so this time feels more treasured, more cozy, more complete.
It’s cold & wintery outside and I can think if nothing better than being holed up inside my house, with my entire family, snuggling, watching movies and getting used to our new lives. Ella is being such a loving big sister, running from room to room to get anything David needs. She even brought her beloved snuggly to let him use.
As the week of Thanksgiving begins, I am surrounded by all that I am thankful for; my dear family. It’s even sweeter than I anticipated.

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The last one?

There are two kinds of Down syndrome diagnoses; the kind that come with health issues & the kind the kind that don’t. David is part of the former. When we first received our prenatal diagnosis, Down syndrome was all I could see, all I could think about. It was overwhelming to comprehend the basic details of an extra chromosome, so I didn’t think about the second side of it; the poor health side. We’ve been blessed with David’s heart (both literally & figuratively); he doesn’t need open heart surgery as so many individuals with Down syndrome do. But he got hit hard with GI issues. I never knew or had any desire to know as much as I now know about nutrition, digestion and output. If you can do all those things without thinking, count yourself lucky.
Today David is being put under for his fourth surgical procedure in as many months. He’s getting a G-tube placed. The benefit is, he’ll be able to eat, receive nutrition & grow. Without this tube, he’s at risk for failure to thrive. I’m anxious about this procedure because this is the first surgery he’s had that is adding something to his body rather than fixing something that isn’t working. He will have a plastic “button” coming out of his stomach that we will use to feed him. He will have this tube until At Least his first birthday. It’s scary & overwhelming and something else we weren’t prepared for.
Our little boy is just that, little. He’s small and doesn’t weigh a lot & looks younger than his 16 weeks. But just like many David’s before him, he is scrappy. He’s tough and sweet & continues to battle against his adversaries (read: poor health) He wants to be home with us as desperately as we want him home. Today we are one step closer.

The dilemma (part 2)

My bipolar journey continues. I just spent an hour talking with my new favorite pediatrician, a patient advocate & a hospital social worker. They all heard me, listened to my frustrations, talked me through them & helped with my fears. We worked together to make a plan for David that I feel happy and comfortable with. We are going to be repeating the swallow test in the morning & doing the G-tube surgery Wednesday or Thursday (if he needs it). I’m feeling much better & feel as though David’s care is going to be taken to a new level. I would love for him to ace the swallow test tomorrow by drinking thicker formula like a champ. But, if not, I’ve made my peace with the G-tube. Prayers appreciated to be home Sunday!

The dilemma

This should be a big week. David’s White Blood Cell count has increased so he’s cleared to receive his G-tube. I should be ecstatic especially since I was on board & borderline ecstatic last week. But it’s not sitting right with me. I’ve been wrestling with it all weekend (well, in truth, I’ve been wrestling with it all since we were readmitted a month ago) I haven’t felt at ease with this stay, the care he’s receiving, the staff and their ability to treat David and understand Down syndrome. I have felt that they have been chasing after symptoms instead if taking a holistic approach. I’m not going to say what hospital we’re at now. I have a post full of frustrations and based on what happens this week, I’ll decide if it’s appropriate to publish it.
There is a hospital across town that has a nationally known Down syndrome center inside! We should’ve gone there when we knew we had to be readmitted. While the Dr’s there don’t exclusively treat DS, they see enough children with DS that I feel they’d look at David’s big picture & be able to assess him more as a whole verses reacting to symptoms like they are doing at our current hospital.
Jason isn’t 100% on board with transferring him and truthfully, I’m scared too. We both are so desperate to have him home that we don’t want to rock the boat and risk extending our hospital stay. But, I can’t shake this feeling that we need a 2nd opinion, that we need to take him somewhere where the professionals understand Down syndrome. I’m afraid my desperation to have him home will allow me to concede to a potentially unnecessary procedure. Yes, I want him home, but at what ‘cost’? How much of me is just supposed to go with the flow & listen to the Dr’s and how much is supposed to acknowledge the mother’s instinct sirens that are blaring?

The endlessness

I don’t like carnival rides. I really never have. As a little girl, the most I could handle was the Dumbo ride at Disneyland. I’ve been known to ride a roller coaster or two, but not by my own choosing. This summer, I took Ella on a Ferris wheel & spent the entire 10 minutes (or was it hours?!) gripping the bar, her and my pregnant belly trying not to look down. And trying not to pass my fear onto her. Through gritted teeth & white knuckles I kept saying, “Isn’t this fun?” (It wasn’t, by the way)
I don’t like rides, I don’t like the up & down, the unknown, my stomach flipping over itself. I just want to get off. But now, my life is that ride. Every day there are unknowns. Each time a Dr walks into David’s hospital room, my stomach flips. Every time we reach a peak and an end to this ride seems right around the corner, we plummet & flip and grip the handles for the next turn.
Today, the doctor told us David’s feeding tube surgery has to be postponed. Any parent can tell you, a feeding tube isn’t anyone’s dream scenario, but we had made our peace with it, especially since it meant he got to come home! Today, they drew blood & determined his white blood cell count is too low for them to feel comfortable doing the procedure tomorrow. This is most likely a result of his illness from a few weeks back, but even scarier, low WBC can indicate a more terrifying issue – cancer. Children with Down syndrome are at a higher risk for leukemia. Remember months ago when I wrote that I was waiting for the other shoe to drop? That’s the shoe. I’m terrified were going to endure this season only to turn around & receive a cancer diagnosis. We’re not there yet, but if he doesn’t soon get to 500 (the magic WBC count number), they will want to check his bone marrow.
So again, we wait. They’ll recheck labs on Sunday & if his WBC are over 500, they will schedule him for surgery ASAP. We had hoped this would be his last weekend in the hospital & we’d be coming home on Monday. But we’re here for At Least another 6 days. The ride isn’t over yet.

The dialogue

This blog is about a family; our story, our journey. The theme is usually David or me (Jill) but there are four of us. Jason and Ella and David and I and even Pasco (our dog. It’s a Chicago Bears thing) Most days it’s my voice. But today, it’s Jason’s:
(Text from Jason)
This is what sucks…I had a great day at school. I’ve been in good spirits all day. Now, taking the same path to get here, having the same sinking feeling as I park my car (and being annoyed with myself, because I get excited about grabbing the first parking spot), walking down the long halls (passing by rooms that have been filled and vacated numerous times these past few weeks), and entering his room (where he lays, alone and helpless)…this shit is getting old. It is frustrating me. I’m tired. I’m now having a bad day. No matter how great my days appear, they are truly never good days. Not with him here. Not without my boy at home, with his loving mom, rambunctious sister, sniffing dog, and grateful father. I hate this.

The kindness

Throughout this experience, I’ve been holding my breath for the ultimate silver lining.  I keep waiting for all of this to be over so I can look back and have an epiphany about how it changed me.  I’m the kind of person that needs results.  If I study hard, I should get a good grade.  If I work out and am sore, I should see the scale drop.  If I’m crying and emotional and have to leave my son in the hospital for months on end, it should be life altering for the better.  There needs to be a REASON for all of this, right?

I often beat myself up for being too much of a Pollyanna.  Every single time we’ve encountered a set back I’ve been know to say, “Well, the silver lining is . . .”  Sometimes it makes me angry.  Sometimes I don’t want to see the silver lining and truthfully, sometimes there isn’t one.  I’m trying to wrap my head around the fact that this may just be a horrible year for us and there won’t be a positive.  That nothing intrinsically good will come out of having to live without our son for the first months of his life.  This sucks.  Period.  It ends there.

BUT (here comes Pollyanna) here’s the silver lining.  We have been blown away by kindness.  I am overwhelmed, humbled and knocked over by the amount of people who have reached out to us.  The people who have watched Ella for us, brought us meals, contributed to our overwhelming medical costs and tirelessly prayed for us.  They have walked beside us both near and far.  Some actions haven’t surprised me at all.  And others have surprised me so much, my only reaction is to burst into tears.  An email from my Dad saying he ordered and payed for Thanksgiving dinner for us so that we don’t have to worry about cooking this year.  A text from a dear college friend asking if she could buy me a crock pot after she heard that mine broke this week.  Countless facebook shares and posts on our blog with prayers and inspiration and one more kind word that gets us through one more day.  In the most trying season of our lives, the people who love us have stepped up in ways we could never have imagined.  That’s it, that’s the silver lining.  We are loved.

The miracle

Two posts in one day, what?! 🙂

Whether or not you are praying people, we need your prayers.  We are sad and weary.  This journey feels never ending.  The worst part is that we keep getting false hope.  We’re truly chasing after the dangling carrot and running a marathon at the pace of a sprint.  We’re burning out but we keep going because we (sometimes falsely) believe the end is near.  But, is it?  Who knows?  Our bodies and spirits are worn out.

We need a miracle.  The doctor decided today she will wait until after David finishes this round of antibiotics and do another swallow study.  If he can swallow properly without aspirating, she’d keep him for a couple of days to make sure he gains weight on strictly oral feeds and handles them well, then send him home.  BUT if he aspirates again, she’ll look for alternative ways to feed him which would probably include a feeding tube for us to administer at home.  So, the prayer and begging for a miracle is that on the 13th or 14th (when she anticipates doing the repeat swallow study) he swallows perfectly!  Truly, this is where we have to beg God for some reprieve and an all out miracle.  Because if he can swallow properly, he can come home without additional complications and we can get on with our lives!!!  That would be a miracle because he’s already ‘failed’ this test once.  There’s no assurances that he will pass this time.  Passing would be a miracle.  So pray, beg, sob, cry out and plead for a miracle for our sweet boy.