Our Teddy Bear's Journey

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

A mother should not have to…

I cannot relate to all the things on this list, but I can certainly relate to many. Mothers and fathers and siblings of medical needs kids are asked to do a lot of things that parents/siblings should never have to do.

This in particular is the one I’ve struggled with the most. Not because it’s the worst thing we’ve ever experienced, but perhaps because it’s the most frequent.

A mother should never have to look into the pleading eyes of their child whilst a horrible medical procedure is going on.
In some ways, I’ve been glad that Teddy’s so little. Hopefully, he won’t remember most of this. But in some ways, it just makes it harder. He doesn’t understand. I tell him what’s going to happen before it does, but he’s just too little to really understand. And the thousand other little hurts – the IVs and the labs and the dressing changes and the people poking at his belly when it’s sore. While I hold him down and participate in the hurt, and he looks at me with eyes that plead with me to make them stop. “Why are you letting them do this to me, mama?”
Ugh.
I know some parents choose to leave the room, not wanting their child to see their parent allowing or participating in the hurt, but I honestly don’t see this as the better choice. Then every time I leave the room, my child will wonder if someone’s going to come hurt him. Then my child will think that I leave the room and let people hurt him. My child will feel abandoned by those closest to him during the times he needs us the most. No, I will not leave. I stay, and I soothe him as much as I can, and I help hold his arms or legs if I need to, and then I’m right there, immediately, to hold him. But dang if it’s not hard.
But on the flip side of that item: “A mother should never have to look into the pleading eyes of their child whilst a horrible medical procedure is going on.” The real travesty being listed is the horrible medical procedure. Not the mother’s place. I hate that the medical procedures need to take place. But they do. And my place is with my kid. Being his parent. And so I will be there, looking in to his eyes, and crying with him.
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Dear Teddy

Happy birthday, kiddo. We’ve come a long way, haven’t we?

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I’ve written a letter to each of your siblings on their birthdays (except I think I neglected them both this year), but somehow this letter is harder to write. Though I’ve spent more time focused on you than I have probably ever spent on your siblings, that time has not been spent on enjoying watching you become a little person. I have been entirely too focused on making sure you are ok. Alive. Growing (and growing fast enough). Not puffy. Dressing changes, injections, blood pressure cuffs at home. Labs, doctor’s offices, more injections, surgeries. So much energy focused on keeping you alive has meant less energy focused on enjoying who you are.

But you are delightful, little one. You are still a baby, whereas your siblings were much older at 1 year.

You like to be close, but you are not a snuggler. Everyone calls you a snuggler, but you really just like to be held, to be close, and are not so much into snuggling any more. You’re far too busy.

Busy. You are so busy. You’ve always had busy hands. Always. And feet. Even before you could really control either one, they were always busy, flitting from tubes to your ears to hair and back to tubes. You have been a holy terror with your PD Catheters.

Most parents call their kids a monkey, but you really do use your feet more than your hands. You use them as tools to help scoop toys closer to you. You use them as a way to touch people when your hands are busy or too far. You use them to play with toys, to play with the iPad that Child Life brings in.

You are very forgiving. You love people. Or you want to love people. Recently, you’ve become more uncertain about people.

You are creative. You can’t get around on your own, so you’ve started using your toys as tools to scoop your other toys closer. If you can’t get to the toy, you’ll get the toy to move to you.

You are so easygoing. When you’re tired and want to be held, you fuss, but you really only get very upset when your Someone’s Going To Hurt Me spidey sense starts tingling – and who can blame you for that?

You amaze us every day. Happy Birthday, little one.

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Thank You

As we approach our one-year anniversary of learning that Teddy was in renal failure, I want to take a minute here to thank so many people.

Friends who’ve brought our family meals while Teddy was in the NICU. Friends and family who’ve taken the older kids during clinic days and admissions. Friends who’ve rounded up snap-front clothes in every size since newborn. Friends ans strangers who sent us gift cards, food, and goodies for the kids during Teddy’s NICU stay.

So, so many of you who’ve prayed for Teddy and our family.

Really, your support means the world to us. We literally could not have gotten through the last year without all of your support.

 

If you’re wondering what specifically to pray for for our family, here are some suggestions:

– Teddy’s continued (fast) growth to get up to transplant size quickly
– Teddy’s kidney to hang in there through the growth to last until transplant
– Transplant workup process to go smoothly
– A donor to be found quickly and easily
– The older kids to have a reduction in their stress
– Randy and I to have a reduction in our stress
– Our family to remain strong (as in, a strong family)
– Acceptance and coping skills for whatever life throws our way

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1 year stats

Days alive: 365

Days in hospital: 108  (just shy of 30% – 29.7%)

Hospital admissions: 10

Surgeries: 12

PD Catheters: 4   (PD Catheters that worked, ever: 1   PD Catheters that worked for more than 2 weeks: 0)

Central Access lines placed and removed: 4

Birth weight: 2.43 kilograms

Current weight: 7.54 kilograms

C-Diff infections: 3

Bloodstream infections: 4

Antibiotics he has had for the bloodstream infections, IV unless noted otherwise:

Ansef
Cetotaxime
Cipro (oral) (IV)
Vancomycin
zosyn
gentamycin
rocephin
ampicillin
cefepime

He’s also had:
flagyl (oral) (Cdiff)
keflex (oral) (skin infection at exit site)
fluconazole (oral) (antifungal)

 

Current Meds: 10 (NOT a record)

Current diagnosis list from hospital discharge and his online medical records:

Diagnoses
Vesico-ureteral reflux
Congenital renal dysplasia
CKD (chronic kidney disease) stage 5, GFR less than 15 ml/min
Anemia of chronic renal failure
CLABSI (central line-associated bloodstream infection)
Feeding by G-tube
Peritoneal dialysis catheter in place
Immunization deficiency
Hypogammaglobulinemia, congenital
Hypertension
Hearing loss
Vomiting
Renal failure, chronic
IgA deficiency
C. difficile colitis
Acute hyponatremia
Hypercalcemia
Hyperphosphatemia
Acidosis, metabolic
Acute infectious diarrhea
Dehydration with hyponatremia
Peritoneal dialysis catheter dysfunction
Acute on chronic kidney failure
ESRD on peritoneal dialysis
Fungal Peritonitis
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Happy Birthday!

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Yup, our little Teddy Bear is ONE YEAR OLD today.

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Too many times in the last year (plus), we were uncertain if we’d be celebrating a first birthday for Mr. Teddy. And here we are! And at home, even, which is just an added bonus.

The story of his early days can be found on this blog in the posts from about a year ago. Today hasn’t been as emotional as I thought it would be. I think the big days for me will be coming up in December.

So, Teddy doesn’t eat orally, but we thought we’d give it a go with the cake. The plate was way more fun (and tasty), but he did end up accidentally getting some crumbs in his mouth and he did not vomit. so… WIN!

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And here are some pictures from his party!!
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Cake came from Icing Smiles, an awesome organization that provides cakes to kids with serious medical issues.

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Dialysis Setup

We don’t use it any more, but this is what our dialysis set up WAS like, lol.

I bought this awesome cart from Menard’s. It’s a tool chest and it was perfect. Super nice drawers.

Stuff
You can see the blue blood pressure machine there in the foreground, too.

Stuff
The top drawer was little stuff. Masks, minicaps, flexi caps, thermometer for twice daily temps, scissors, a small flashlight just in case, heparin and syringes, etc.

The middle drawer had drain bags and clamps. The bottom drawer had tubing cassettes.

I faced the machine towards the bed, so backwards on the cart, but that way I could see the front of the machine from bed or my chair. It was perfect.

And then the closet. Fellow kidney moms will recognize the giant boxes of solution.
Stuff

And 16 kajillion other supplies.
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All of them completely pointless now.

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Nutritionist

Our nutritionist has been advocating for making a switch to part formula for a long time now. All while saying that breastmilk is best for him, of course.

And out of all the members of our healthcare team, the nutritionist is the most likely to just walk in and issue an edict and expect obedience, not discussion.

About a month ago, she walked in with a can of PM60/40 (the formula for renal kids) and called it our new friend. She said to add two scoops to his breastmilk every day. Um… no. I mean, there was no discussion, no mention of alternatives, etc. I essentially refused and we agreed on doubling the protein powder instead and seeing if that would encourage enough growth.

I also said that I was going to start doing a blenderized diet with him to replicate what those two scoops of formula would have given him in terms of calories and fat and protein. I asked for specifics – numbers. How many calories, how much fat, how much protein, how much potassium. I was not given any. I asked what the goal was with the formula fortification. “just getting him more nutrients.” And yet, despite the incredible lack of specifics, she repeatedly said that blenderized diet wouldn’t work.

So, we came home and I looked up what would be in 2 scoops of PM 60/40 and I came up with a few recipes to give him the same calories, protein, carbs, and fat. And I made them and he had them for 2 days before the diarrhea from the CDiff got too bad and I stopped. That was end of October.

Then dialysis, which was supposed to help him grow, didn’t work out for us and I was accepting that we would probably have to fortify. I was ready for that. I can go with the flow. I know that I have a reputation among the team as being perhaps unreasonably against formula, but I’m not. I just think that it needs to stay in its proper place – as a last resort option after other options have been ruled out. Not as a first choice.

So I was ready for You’ll Probably Have To Fortify. What I heard instead, on perhaps my lowest day since Dec 6, was that they wanted me to do half formula, half breastmilk. In retrospect, they were thinking I’d need to decant with kayexalate (which is a potassium binder, his potassium had been pretty high) and you lose a lot of volume doing it that way, and it would have been impossible to keep up with him. But it wasn’t presented that way. And I was, at that point, 11 days away from my goal of 1 year without formula.

11 days.

So I asked if we could just wait until the 27th. I’ll do it on the 27th, but I won’t do it before then. 11 days won’t matter that much. I’ll decant breastmilk and run through the rest of my freezer stash if I need to.

Well, then his potassium got a little better and I didn’t need to decant after all.

Then I asked if I could meet with the nutritionist and our nephrologist the next day about his diet. I asked them outright, “If Teddy were eating like a champ, would you still feel he needed formula, or would a diet that’s breastmilk and food – like a regular kid – be fine?” A diet of orally-consumed food and breastmilk would be fine as long as labs were stable and he was gaining weight appropriately. So if I can replicate that with a blenderized diet, I can actually control what he eats to a much finer degree than I could if he were eating food. If I can get him what you think he needs as far as potassium, calories, fat, protein, etc., using real food, that is my strong preference instead of something from a can.

There was some vague statements about formula followed by “understand?” to which I kept replying “no.” Then I got the discussion of how hard it is, and I told them that I’m not afraid of math and i love Excel. I got the discussion of how we’d need to blend the food really really well to get it through the tube (duh). I just kept politely pressing and finally said “here’s where I’m at. I will willingly and happily move him to a formula/breastmilk combo if that’s what’s truly going to be best for him. My goal is the same as yours. I want to grow him as fast as possible and keep him as healthy as possible to get him to transplant. I would prefer to do that with real food and I am confident I can closely replicate what he’d be getting from formula with real food instead. I’d like to give it a try.”

SO, the end result is that they ended up deciding that we can stick with all breastmilk for the time being and watch his labs. After he turns 1, my concession is that we will either add scoops of the formula to the breastmilk to increase the fat/calories, or we will move to half formula/half breastmilk. (and this will just depend on labs, and whether I comply or not remains to be seen. If we’re just adding fortification to his milk, I see no reason this can’t be accomplished through food.) In the meantime, I will get cracking with my spreadsheet and come up with a varied diet for him that replicates what he’d be getting from formula and bring it back to them and we’ll discuss. They threw out at the end something about looking at not just macronutrients, but micronutrients, too, but I think that might be a little bit of BS. You’re going to get more/more varied micronutrients from food than from a can.

I don’t understand how nutritionists seem to think eating real food is so overly complicated.

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Hospital Bag

So, I keep my suitcase packed at all times. At all times. When we get discharged, I unpack the clothes and wash them all, I replace the groceries, rotate the book if needed, change out anything else, pack it all back up, and put it back in the car. I’ve driven that suitcase around since December 26 last year (3 days after NICU discharge). And I’ve never regretted it and I’ve been glad to have it on several occasions.

Stuff

Scissors, stamps, envelopes, the Madison video (in case I decide I need more physical exercise), my devotional book all in the mesh pocket there.

To the right (top) of the case, I have a bag with my clothes (3 shirts, 2 underwear, 2 socks, 1 pants, PJs, camisole) and a bag with Teddy’s stuff (bath soap, diaper rash cream, and an empty space for clothes that I pack last minute on each trip to IA City). That green tote is my toiletries.

The middle of the suitcase is odd bits and pieces. Feminine needs, some toys, Teddy’s teddybear from the ambulance, odds and ends.

And, as you can see, the bottom of the suitcase is my groceries. Including some treats! And a giant Pyrex cup that is indispensable.

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Features

Yes, it’s time for a Features update on Mr. Teddy. Mr. Teddy who was NAKED yesterday. As a Jaybird. And I kept him naked most of the day. Because I could.

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So this is his torso.

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This is a closeup

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This is his back. The scars there are from his nephrostomy when he was 7 or 8 days old.

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He was a little wiggly here, but I wanted to photograph his needle tracks. He’s been hitting the horse a little heavy lately, lol. Poor kid was literally running out of places to get labs during this stay.

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Planning

I’m a planner. I can roll with the punches, but I roll better when I’ve thought about whatever situation we’re facing ahead of time. That’s why I had 5 birth plans for Teddy.

Since his birth, Teddy’s been making it hard to have plans. It’s hard to think about how we’ll handle what we might face in the future when I have NO IDEA what we’re going to face in the future. Teddy’s not following a predictable path.

Regardless, it’s becoming apparent that I need to be able to think of what we’ll do in a few potentially upcoming situations. First, what will we do if Teddy needs hemodialysis? Second, what are we going to do when Teddy gets his transplant?

And I’ve put off thinking about both of these things, because the answers are all that I don’t know. I just don’t know. I can’t realistically leave the kids with someone else 3 days a week. I just can’t. Equally unrealistic is bringing them here. Where tha leaves us (and school) is somewhat of a mystery. Do we find a nanny who lives in Iowa City? She meets us at the hospital, take the kids for the time Teddy’s on dialysis, and brings them back when we’re done? We can do school in the car and on home days? Do I have that kind of energy? Do we have that kind of money?

Do we find an apartment in Iowa City? Live at the Ronald McDonald house? Either option allows us to avoid so much driving but means we don’t see daddy and I’m a single mom of 3. Not ideal.

 

And transplant? I don’t know. Kids here in Iowa City? Kids home? Who is responsible for the kids?

 

Where is my Aunt Bea?? (of Mayberry fame)

 

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