Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

2 weeks: Joy

On top of all the less Rainbows and Unicorns emotions, there’s this one: Joy.

We have so much to be joyful for!

Our community has been so generous. Last weekend, we had Tunes for Teddy, which was AMAZING in terms of love and support from our community. For the last 6ish weeks, we’ve had an auction, to which so many people donated items and bid on items. We’ve had no lack of offers for meals over Teddy’s many hospitalizations, including this upcoming one. It is difficult and humbling to accept so much generosity – I think until you’ve been in a position to be on the receiving end of so much kindness, it’s hard to picture how hard it really is.

So. Many. People have been generous with their time, love, prayer, and kind thoughts. We have SO MANY people praying for us. So many people offering good thoughts, positive vibes. So many people – friends and strangers – keeping my sweet baby in their thoughts, caring about what happens to him. Amazing.

And there’s the overwhelming joy that my baby is going to get a chance to grow up and live a somewhat normalish life. Hospitals, blood draws, blood pressure checks, and doctors will always be a part of his life, but hopefully, a year or two from now, they’ll be a much much lesser part of his life.   And that he’s getting this chance before his health gets too bad means the world.

This morning, I was giving Teddy his morning meds and it struck me that in another 2 weeks, he *might* have regular blood pressure without the meds. AMAZING. He might have normal blood pressure and not need a bunch of drugs to make that happen. His new kidney just might be actually regulating his blood pressure for him. Wow.

Perhaps we’ll get to stop some of the shots, too. His new kidney SHOULD make the hormone that tells your body to make red blood cells, so he should not need me to inject it into his poor baby legs every week any more.

Those two things alone are huge to me. Amazing.

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3 Weeks: Anxious

Oh My God Can It Just Be May 9 Already?? Preferably May 9 in the evening, after it’s all over?

Wikipedia says that Anxiety is “a psychological and physiological state characterized by somatic, emotional, cognitive, and behavioral components. It is the displeasing feeling of fear and concern. The root meaning of the word anxiety is ‘to vex or trouble’; in either presence or absence of psychological stress, anxiety can create feelings of fear, worry, uneasiness, and dread. It is also associated with feelings of restlessness, fatigue, concentration problems, and muscle tension.”

Yup.

Physical inability to be still. Hyper focus on doing things. Really anything. Jaw tension to the point of giving myself headaches. Grinding my teeth unconsciously. Inability to concentrate. (yeah, combine that with the hyper focus on doing stuff… good times.)

I’ve never really had this amount of lead time before a surgery. I’m accustomed to the anxiety kicking in the night before or the day of a surgery, because that’s about how far in advance I’ve known about it. I’m not accustomed to anxiety kicking in 3 weeks before. Yikes.

I’ve spent most of the LAST 3 weeks living happily in a bubble of denial. But 3 weeks out… the denial isn’t working for me any more and now it’s like Transplant TV playing in my head… all Transplant, All The Time.

Come on, May 9!!

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Teddy’s new Bag

Our Sugarbooger backpack was looking very beat up (it just didn’t hold up in the laundry, then Teddy spilled paint on it). The backpack that came with the pump is small, but not insulated. Teddy needed a new backpack for his feeding pump and bag.

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I searched ALL OVER the internet looking for toddler sized backpacks no larger than 10 inches tall that were insulated. No dice. So I ended up deciding to go with a small lunchbag that I could add straps to. This Skip Hop lunchbag came from Amazon and then I added the orange backpack straps and a snap loop inside to hold the bag. It’s very sturdy – MUCH sturdier than the Sugarbooger bag ever was. It stands up on its own. It seems well insulated. Teddy seems to love it 🙂 I think it’s adorable! Hopefully, it holds up to our daily abuse.

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Tunes for Teddy AND 31 Bags Party

This 31 Bags party ends today, the seller is donating her commission to NFT in honor of Teddy (for his fund). If you like 31 bags, or are looking for a Mother’s Day or Graduation gift, go check it out!

Tunes for Teddy is coming up on Saturday – wow! Be sure to buy your tickets! There’s still plenty of tickets available. The evening should be super fun – local bluegrass band CW Hobbs, Face Painting and activities for kids, a Photo Booth, Hula Hooping and swing dancing (with a free lesson!), and a Taco bar. Tickets are just $12 in advance and $15 at the door.

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4 weeks to go: Scared

Yeah. The big one. Scared.

I don’t know that I have much to say about this. This is scary.

The surgery itself is scary. He’s had surgery before, but this is a BIG surgery.

The immediate post-transplant time is scary.

We’ll be in the PICU, which is new to us, and that’s scary.

I’ve never had to do blenderized diet in the hospital that’s… intimidating.

Then there’s the whole We’re Going To Send You Home And You’re In Charge Of Keeping That New Kidney Happy aspect of what will be our New Normal. Scary.

It’s all so unknown. Scary.

I feel horrifically unprepared for this, but I don’t know what else I could be doing to GET prepared. Scary.

Realistically, this particular surgery isn’t that much more likely to be fatal than any other surgery. It’s not particularly dangerous. But there’s that overhanging sense of there being so many things that could go wrong, any one of which leads us down the road we try not to think about. Scary.

Scared.

And, yes, we trust God. This isn’t about trusting God. I know that trusting God isn’t a guarantee of anything other than that He has a plan that I can’t see and that ultimately, it’s for good things. But there’s no short-term guarantees there, a fact of which I am well aware. There’s no Trust God and everything will work out the way you want it to verse in the Bible. There’s just Trust God. And, frankly, that’s REALLY hard to do sometimes.

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Want an Egg?

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Wow.

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Let’s Talk Potty Training

Our older kids were both EC’d. (Elimination Communication, it involves learning to use the potty from a very early age, it’s not coercive, it’s just about watching your baby’s signals – babies signal that they need to eliminate just as they signal that they need to eat, if you pay attention to those signals, you and baby can communicate about elimination just as you can communicate about eating.) Wally was out of diapers by 12 months (I still put him in diapers for back up when away from the house for several months after just in case), and Genna was pretty much out of diapers by 18 months.

When Teddy was born, my intention was to start EC with him, but then the whole NICU thing happened. And his urinary system is not exactly normal. And then, you know, the thousands of admissions after the NICU. And he was so sick some of those times. It was just at the very bottom of my priority list.

Fast forward to the present day. I started setting Teddy on the potty as part of his physical therapy. I was supposed to think of ways to have him sit so that he had to actively engage his legs in order to remain upright. So, sitting on a pillow, for example, or straddling my leg. The potty seemed perfect. (and it was.)

Prior to this, I’d been letting Teddy have naked butt time and talking about pee, which is how I prefer to start EC with my littles. I sign Toilet and say Pee!! when they pee. So I set him on the potty one day while I was using the toilet to let him practice putting weight on his legs, and he peed in it.

Now, considering that he pees a lot and often, that wasn’t necessarily a surprise. 🙂 So I said Pee and signed Toilet and we went on our merry way.

A few weeks later, with barely any effort on my part, Teddy pees nearly every time I set him on the potty, tries to take his diaper off when he needs to pee, and sometimes gets pretty upset when he needs to pee but he’s stuck in his diaper. He occasionally wakes from naps dry and wants to pee in the potty when he wakes up.

It’s going really well, and without really any effort. I’m not going to sweat it if this is where it stops, but I’m surprised and happy that we’re at least where we are with this.

I’ve actually never had a baby as old as Teddy who’s still in diapers full time at the ripe old age of 16 months, lol.

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FAQ’s

Here’s some questions I am asked often about Teddy:

1. Is a kidney transplant a cure? (Ok, I’m not ever asked this question, it’s more often just an assumption made.) NO. There is no cure for kidney disease. Transplant, like dialysis, is just a treatment method. Dialysis and transplant are both considered “renal replacement therapy.” A transplant is a treatment method that requires a lifetime commitment to taking antirejection drugs, each of which come with their own list of side effects (including cancer), yet it is the best treatment currently available.

It is also more than likely that Teddy’s first transplanted kidney will fail at some point – the average life is 15 years (obviously, that means some last much longer, some last shorter). At that point, he’ll go on dialysis and we’ll start looking for another donor for him and/or wait for a cadaver donor. Subsequent transplants are harder to find a match, because he’ll have picked up his first donor’s antibodies in addition to his own antibodies, and more antibodies = fewer potential matches.

2. Once he gets his transplant, will he be able to get rid of his tubes? No. The only tube he has right now is his feeding tube, and that will come out once he’s able to consume all of his calories orally. He’s more likely to do that after his transplant, but the two aren’t necessarily related that directly.

3. How will they fit Tiff’s kidney into his little body? Do they just put in a part of a kidney? They will put all of Tiff’s kidney into Teddy. (Livers, they can just cut off a portion, but with a kidney, you need the whole thing. Some people get confused because they hear you only need a portion of your kidney function to live, and that’s true, but you still need the entire kidney.)  I honestly don’t have a good visual of how they’ll physically cram her kidney into his body, but I don’t really have a good visual of what your insides look like at all. They’ll put her kidney centrally in his lower abdomen. I imagine they’ll just kind of squish whatever else is already there a bit to make room. 🙂

4. Do they take out his old kidneys? This hasn’t yet been determined. Normally, they leave in the native kidneys, as outcomes are usually better with the native kidneys in place. However, there are always exceptions, and they’re currently trying to determine what is the best thing for Teddy.

5. Why does Teddy vomit so much? Who knows. Honestly. Kidney disease makes you nauseous. There could be other things at play, as well.

6. Isn’t Teddy on a restricted amount of fluids? No. Many adults who have kidney failure and are on dialysis have a fluid restriction. Teddy (and many kids like him) actually doesn’t concentrate urine, so he pees quite a bit more than an average kid his age would – and that fluid needs to be replaced. So, he takes in actually more fluid than most kids his age.

Got questions? I’ve got answers. Don’t be shy.

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5 Weeks to go: Sad

Another emotion I’ve been dealing with recently has been sadness.

Yes, transplant is exciting and we’re happy he has the opportunity and thrilled Tiff was a match.

But transplant is also sort of “final.” We’re giving up. Offically and completely giving up on his native kidneys.

Most of you probably think this is silly. After all, we left the NICU knowing his kidneys were never going to actually work. But I’ve learned that many parents of kidney kids are like me, and they hold on to this insane secret hope that, against all odds, at least one of their kid’s kidneys will get better.

The rational part of my mind KNOWS this is not realistic. But parenting – particularly parenting a medical-needs kid – is not always about using the rational part of your mind. Sometimes you rely on that irrational part of your mind as a survival mechanism. And it’s sad to let it go.

It’s sad to let go of a dream you had for your child, no matter how irrational the dream.

Last week’s ultrasound really just, again, gave me the kick in the pants I needed to really and truly admit to myself that not only are his kidneys not getting better… they’re definitely getting worse.

It still feels like giving up… but also it feels more like moving forward.

I hope I don’t come off as being super strange to those of you who’ve never had a kid who needs a kidney transplant. I know all the kidney mamas out there understand, but I worry about how all this soul-bearing appears to everyone else.

His transplant is a big transition – a big change – a big step. Big, as I’ve said. Big, big, big. It’s like getting married or having a baby. Moving across the country. Big life changes – even positive, happy ones – bring a lot of mixed emotions. Most people, before getting married, face that moment when they wonder if they’re making a huge mistake. This is a lot like that – the mixed emotions, the wondering if we’re making a huge mistake – except that there are much higher consequences.

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