Because I was a mother before I had David, I know that many of the things I feel about him are not exclusive to parents who have a child with an extra chromosome. The overwhelming love, the complete obsession, the desire to fight anyone who would say anything disparaging about your precious miracle; I feel all of those for Ella. One thing that has surprised me is how stinkin’ cute my son is. I know, I know I shouldn’t even think that let alone write it. But when I was pregnant I couldn’t imagine that I would look at David & see anything other than Down syndrome. I didn’t expect him to look like me, Jason OR Ella. I had very strict images in my mind of what he would look like & I grieved that he wouldn’t look “like us”. I am so happy I was so wrong about so much!
Not only does David look A LOT like Ella (see below for our version of “who wore it best?”) but I see both Jason AND I when I look at him. I don’t ever see Down syndrome when I look at him. I see happy smiles & a pointy little chin & the most sparkly eyes I’ve ever seen on a baby. I hope so much that this is the start of something in our family; that we don’t see an individuals disability first, but notice all of their amazing features & qualities. I hope that Ella won’t bat an eye and will be loving and welcoming of any friend with any number of disabilities. I hope that I become the kind of person I’ve always envied; a person with grace and warmth who reserves judgement & welcomes all.
We joke that these last four months have been a crash course in medicine. We feel as though we have our Associate’s degree in medical terminology. We know more about the GI tract than we want to. We have dilated & irrigated ourselves right into expert status. I can rattle off medical terms I can’t spell & can drop them into daily conversation easily. The things parents do out of love for their children is animalistic; there’s nothing we wouldn’t do.
David is doing great! We have a goal & hopefully a discharge plan. Our house looks strangely similar to a medical clinic with equipment in every corner. We’re ready to care for our son & his needs at home.
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.
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.
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.
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.
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!
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?
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.
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.