Moments

Every day, I wake up and feel relief for a brief moment that the nightmare of Tula’s hospitalization is over. Then reality sets in.

The worst of the immediate danger has passed, but the trauma and repercussions linger on. This is her life now. I get up in the middle of the night to make sure she hasn’t crashed, check her blood sugar. We poke her itty bitty pebble toes five or more times a day, more for ketones. There isn’t enough real estate on those little digits so there are cuts upon half-healed cuts. She takes injections of two types of insulin in her squishy baby tummy, the back of her chubby little thighs. We have begun the delicate tightrope act for her that we have walked for years now with Emerald.
I’m so tired.

At least partially from the lack of sleep. For the foreseeable future, I’ll still need to check her midway through the night. Mostly she sleeps through it; sometimes she wakes up and has difficulty settling herself back down.

Another larger part is likely depression. Good old case of feeling sorry for myself.
I figure everybody feels this way. Like every time you find your footing, something else knocks you back down. When I am in an optimistic mood, I appreciate the chance to catch my breath, to stand on solid ground. It isn’t one bad thing happening one right after the other. Gabe was diagnosed in 2011, Emerald in 2013, Tula in 2017. Each time we were hit, we had a chance to recover, adjust to our new normal, before something else was layered in. It is a kindness.
Hard to always keep that mind set, though, and sometimes I get mopey. Because the truth is, it is unacceptable. It is completely not okay that Tula and Emerald have to deal with this. It is not okay that it is something else our family has to handle. It’s not okay how scary and awful and horrible it is.

I am not okay with this.

And that’s okay.

We can feel however this situation makes us feel. It is a sucky situation and we don’t have to be happy or put on a brave face about it. And whether or not we like it, it is our reality now and we do have to cope with it.

In Marvel comics, there is this group called Damage Control that comes in after superheroes have wrecked the place fighting bad guys and cleans everything up. That feels like my full time job. I am just trying to mitigate damage.

To that end, I have contacted the school counselor for Emerald and Benjamin and talked about how I can best emotionally support them through this. They seem to be taking it fine; I am probably overthinking. I just want to do right by them. Having someone to talk to could help. I, too, have sought counseling. Her assignment for me this week was to identify things I can do to “satisfy my spirit”, to make sure I am taking care of myself. Can’t take care of anyone else if my needs haven’t been met and all that.

Every day, I have two lists. Lists give me a great amount of comfort because it makes it feel like I have a bit more control and that I can make it better. The thing with mental illness is that it becomes about maintenance, just making it through another day and into the next one.
The first list is things I have to remember to do for myself--eat meals, drink water, take meds, change clothes.

The kids, it is easy. It is not often I forget to administer Gabriel’s medicine or check a blood sugar or administer a shot for the girls. We are at every doctor’s appointment, often 15 minutes early because I want the kids to learn to be respectful of other people’s time. Regardless of our circumstances, the children are my priority and their needs are always met. It isn’t uncommon for Michael to come home at the end of the day to find that I have forgotten to eat or change out of clothes that were peed on, dizzy and depleted.

That list is the bare minimum I have to accomplish every day. Some days are better than others. The other list is things that make me happy.

It is about moments. Not a whole day or an hour, just…moments to get me through till the next moment. To remind myself that I am indeed a person, apart from Michael’s wife or the kids’ Mom. I have my own interests, things that I like just for no other reason than because I find them enjoyable.
When I’m scraping the bottom of my reserves and have nothing left to give anyone, I pick something from the second list—coffee with Amber, going for a run, laying in a warm spot in the grass in the sun.

So here’s to moments. Here’s to brighter days and stable sugars and sure footing. Here’s to making it through.

--Andie

Tula's Bad Day, Part 2

Warning for all you delightful readers out there:

This next section is going to be tough to read at times. It was a difficult time for all of us, but

particularly for Teeny 9-month old Tula. I write because it is a moment that needs to be

remembered in all its ugly, painful glory. Feel free to skip and jump in next time, when we are

on the upswing and things start getting a whole lot more optimistic.

Continued from “Tula’s Bad Day”

Tula had been poked and drained and hooked up to every machine to monitor every function

of her little body. She had, blissfully, slipped into unconsciousness, which we knew from

experience she would likely drift in and out of for the next twelve hours. (This educated guess

brought to you from five years prior when Tula’s older sister went into diabetic ketoacidosis and

went through this very same thing.)

The charge nurse called Amber at the pediatrician’s office and told Dr Shah that he was

needed back. Knowing they had made only one hospital referral that day, Amber knew to

who she was referring. She must have been so scared. I wish I could have spared her that.

As it was, I was outsourcing all communication relating to my mother and Michael so I could

focus on the situation at hand.

Dr Shah and Amber discharged the rest of the patients for the day, asking them to come back

tomorrow. We had gone up right at around lunch time, so Dr Shah didn’t even get a chance

to eat. He just came up there and sat with us or nearby until we left.

They moved us to another room. There are no endocrinology specialists at the hospital

where we were, so we would be careflighted to a children’s hospital a few hours away.

This concerned me quite a bit, but we were going to do what needed to be done.

The first person I had asked my mother to call was the children’s minister from our church.

A short while after we were moved, Jennifer showed up to pray with us. She had let the

elders and church know, which was a comfort.

Tula looked so very calm and peaceful; it was hard to know how bad it was.

All of the hurt was inside and anything outside was covered by a hospital blanket.

If she could sleep through it, how bad could it be?

She wasn’t allowed to eat until she was taken off of IV insulin so they could very gradually

bring her blood sugar down while rehydrating her. Pushing it too quickly could have catastrophic

consequences—seizures, cerebral edema, coma, death. Though we have been introducing

solid foods at home, the bulk of her nutrition comes from me nursing her. We had to ask the

nurse to track down a pump so that I could express the milk she wasn’t drinking. Food was the

last thing on my mind, but I hadn’t eaten anything all day. Michael made me sit down and

eat a veggie burger and hummus and pretzels.

The weather was foggy and dreary; it had already iced over and was expected to snow,

so the helicopter couldn’t come get us. In its place they sent an ambulance which would

arrive in a couple of hours. In the meantime, I would be able to hold her, carefully.

I set up in a recliner next to the bed with a nest pillows and blankets on my lap. The nurse

helped settle her in my arms so she wouldn’t be laying on anything painful or uncomfortable.

It made me feel better to hold her.

Two leaders from our church came to visit while I loved on her. I’m sure I wasn’t the best

company, but it meant a lot that they were there.

Michael’s parents drove up from Lubbock—together with my family, we decided on a plan

for how to handle the rest of my kids. Our personal care assistant and brother Jarrod were

both at the house keeping them. It was decided Gabriel would fare best with Jarrod, who is a

special education teacher. Mom would take Benjamin. Rhonda would pick up Emerald and

bring her and Michael to the children’s hospital. Tula and I would ride together in the ambulance.

They asked us all to leave the room so they could try and place an arterial line.

We stood outside the door and listened to weak cries impotently. It was pitiful and painful

and nearly unbearable. They were unable to complete the procedure.

At around 5, the transport team arrived. They were so very nice. They strapped my little

baby to a gurney and we loaded up and we’re on the road by six.

I had to sit up front, which felt very, very far away. I couldn’t reach back and touch her,

couldn’t hold her hand, couldn’t stroke her hair. I also couldn’t get in the way.

On the rearview mirror there was a camera that showed what was going on back there,

sort of like a video baby monitor. On the dashboard, there was a clock. Knowing the ride

was going to take about two hours, I allowed myself to turn around and check on her every

ten minutes and no more. The entire way I sat straight and still and silently, glancing occasionally

at the time to know how long it was before I could turn around again.

When we neared the metroplex, the driver turned on KLTY, Christian radio. I remember

the song that was playing—

Be strong in the Lord

Never give up hope

You’re gonna do great things,

I already know

Gods got a hand on you, so

Don’t live life in fear.

Forgive and forget,

But don’t forget why you’re here

Take your time and pray,

These are things I would say.

It helped.

My grandparents met me at the hospital so I wouldn’t have to be up there alone.

They held T’s hand while I filled out paperwork and the staff went through all the stats checks.

We arrived around 8, Michael followed at 9. Though she doesn't have many words yet, she opened her
eyes and said, "mama? Mama!" She grabbed my hand and wouldn't let go, sinking back into unconsciousness.

The first night was rough. I had been up all the night before with a vomiting baby; now

they came in every hour to do blood sugar checks and blood gases. One of the IVs had clotted

so they were unable to draw from there; they had to poke her fingers and toes and heels and

milk them for blood. There were so many cuts on her hands and feet that it looked like

she had crawled through glass.

In PICU, there was a straight backed chair and one of those hospital sofas that you’re

supposed to sleep on. I got the first shift on the sofa—it was so cold, I piled blankets on me,

curled up in ball hoping to rest. At 2.30 we switched, and I stayed up the rest of the night.

Slowly but surely her blood sugar came down, but as it did, Tula became more awake and

more aware. She was cold, in pain, scared, but mostly importantly, she was hungry.

The only thing I was allowed to give her to eat or drink was a sponge on a stick soaked

with a bit of distilled water.

You could hear her stomach growl over and between her cries, watch her greedily and

desperately suck the sponge dry. She gets food and comfort from nursing and she didn’t

understand why mommy was holding her and not feeding her. It made her so angry and she

screamed and thrashed; I’d sing and rock her to sleep and hope the next time she woke she

would get to eat.

Unfortunately this was Sunday, New Years Eve. Which meant we were waiting for the

doctor to visit and adjust her care plan to allow for food on not only a weekend, but a holiday.

It felt cruel.

We were not allowed to eat in there, which meant we could either leave her side or just go

hungry. You can guess which we chose, at least until she was able to eat herself.

Tula was fully awake and aware now. There was an IV pumping insulin, antibiotics,

fluids, electrolytes, and sugar on her right arm. On her left hand was an IV that had clogged.

She had heart monitors all over her chest, a pulse ox monitor on her big toe, a blood pressure

cuff on her calf.

They needed to draw blood but all her major draw spots were shot; her vessels are so itty

bitty to begin with. So Michael and I have to physically restrain her while they stab, dig, dig,

pull out a little, dig, remove the needle, stick her again in a new place. This happened over

and over again for forty five minutes. At first, she fought so hard I was afraid she was going to

pop her shoulder out of socket trying to get away. After a long while, she just sort of whimpered

and squirmed, like she had given up and was resigned to it. I’m not sure which was worse.

Finally—finally—they got a spot and drew enough blood for the two tests...and it immediately

clotted. All of that, and for nothing.

That was so emotionally taxing, I asked Ken and Rhonda to sit with Tula while Michael and I

went to the cafeteria. I didn’t feel like eating but I had to get out of that room, even for a little while.

A regular room opened up; we moved up a floor. Things were more relaxed. They took one

IV out and let Tula take a bubbly bath. Her face was dried out and red; I had to rub aquaphor

all over it. She got to put on clothes for the first time in a day. When daddy walked in the room,

she gave him the first smile we’d seen from her in a while.

Emerald wanted to celebrate New Years, so she brought streamers and noise blowers and

hats and poppers. She tied the streamers to Tula’s crib bars.

She kept messing with and kinking the remaining IV until it just got pulled out. They decided

it wasn’t worth replacing, much to all of our delight. It meant that she could crawl around and play.

I laid some blankets out for her and gave her a little compact mirror, a plastic bottle, a noise blower.

She was so happy, so much more herself.

I made up that awful couch bed with blankets and she slept in my arms. It was the first time

I had rested since this whole thing started because I felt like she was safe.

Everything after that point was moving us closer to going home. She improved so very

quickly, adapted to getting shots and finger pokes. Now she just looks at you curiously,

doesn’t even cry (most of the time anyway). They figured we had been through so much

training already, there wasn’t a reason to keep us there. So they packed us up and sent us home.

The hardest part was…well, the most challenging part of developing her diabetes plan was

that she is almost exclusively nursed. We have introduced food, but her carbs come primarily

from me. We have had to work on figuring out how to handle insulin when you can’t know how

much milk/carbs she’s getting. When she does eat people food, it isn’t enough to count for much

of anything. Her insulin does are so small, microunits, that just a few drops off can be detrimental.

Yesterday we were off by 0.5 units of fast acting insulin and she dropped from 416 to 20. She was

so weak she could barely cry.

I don’t know if we can handle this….all of this. I do know that we don’t have much choice,

and that we are going to rock it the best we possibly can. Because this furious, beautiful, perfect,

strong little girl is worth everything in the whole world.

—Andie

Tula’s Bad Day

Saturday morning, in the group text that includes my mother, brother Jarrod, and sister Amber, I mention that Tula had a bit of a rough night. She was running the smallest fever—100.3, that borderline zone where yeah it’s a fever, but only just. She had vomited a handful of times.

Amber suggests bringing her in to Saturday clinic at our pediatrician where she also works as insurance and billing. Mmmm...I waffle. She hasn’t been sick that long. She’s just on the border, just a little sick. If I take her, I’m exposing her to other kids’ illnesses when most likely she’s got a virus. Thinking about keeping an eye on it for a little while, taking her in Monday if there wasn’t improvement over the weekend. Mother experience: 99 times out of 100, this stuff passes with no need for intervention.

Amber puts us on the schedule for 11 that morning, in case I decide she needs to be seen. I figure, might as well. Just in case.

We spend the morning laying around the house with Tula resting, just being  lazy. It’s gross cold outside, kind of drizzling, so I doubt again taking her in—I’m going to get this little baby out in this weather and she’s going to get even sicker and they’re likely not going to be able to do much. Ahhh, might as well, I guess.

When we get there, we hang out with Amber for a little while, drinking coffee. Joking because Tula seems a little out of it. Poor baby.

Dr Shah comes in to see us. He’s not our regular pediatrician, but another one in the practice that sees kids on the weekends. He is super nice. We haven’t been concerned about Tula getting enough fluids because she’s nursing well and still having wet diapers. I don’t like that her lips are chapped—that’s pretty strange in a baby. He examines her, asks me some questions. Routine visit, ending in not unexpected diagnosis:

Ear infection, little bit of dehydration.

To get her rehydrated quickly, she’s being admitted to the hospital for IV fluids. Probably won’t be there long, but there are no guarantees. They’ll give her antibiotics for the ear infection, and she’ll be right as rain.

The hospital is right next door, so I call Mike and let him know what’s going on, ask him to let his parents know what’s going on, and I drive her over myself. Shoot my mom a text asking her to run me something for lunch on her lunch break if she can; she works in the lab at the hospital. I don’t get a response which is not unusual—she doesn’t have her phone on her unless it’s break.

Everything is so calm and quiet. Because it’s the weekend, there isn’t a ton of personnel around, hardly other patients. This isn’t a bustling metropolitan hospital, just a sleepy little place. Tula’s trying to fall asleep again on my shoulder, keeps jerking awake. It reminds me of when I had to take Emerald to the emergency room when she was diagnosed. We just thought it was dehydration, but she had gotten bad so rapidly. That was a scary time.

I wasn’t quite connecting all the dots in my head yet.

The charge nurse buzzes us in right away and we start the check in process. They weigh her—18 pounds, a little down from her 6 month check up. Hmm, that’s not good. Lost a lot of fluids. Take her measurements, her head circumference, height. Time to make her mad: they have to check her blood glucose. After vomiting last night and this morning, she’s probably a little low.

She doesn’t wake up or flinch when they poke her. Huh.

The glucometer counts down and flashes: >500.

Huh.

They get a new machine, test it again. Same result. I might have dropped a low-grade expletive. Things have officially clicked into place, the last bit of the puzzle revealed.

I step away from the nurses that are taking care of my baby and I make a phone call: “Michael, call your mother. It’s happening again.”

This is not my first time at the horror show, so I am able to calmly notice how well these nurses are managing the situation. They let me know that I shouldn’t worry but that we were going to have a lot of friends join us, just so we can get everything going as quickly as possible.

From a floor that felt practically deserted before, a dozen professionals come in. I stay near her head, smoothing her hair and holding her hand, while they try and get blood drawn, two IVs inserted, a catheter placed. You’d think it would be noisy with so many people in there, but everyone is being so respectfully subdued the can focus. Someone turns out the lights in the room, and the delicate web of Tula’s blood vessels are illuminated by special lights. Because she’s dehydrated and her vessels so small, it is hard to get the lines placed.

My hands full with Tula, I ask if someone will call my mom down in the lab and ask her to come up. The charge nurse takes care of it. My sole focus is completely on my little baby. When the door swings open to let more people in, I faintly hear the intercom announcement: Code blue, code blue. That’s sad, I think—I hope whoever they are that they’re okay.

The catheter causes issues because as soon as they take off her diaper, she pees all over the bed and everyone gathered around, not to mention all the sterile equipment laying around her. When did that get here?

After multiple failed attempts to place IVs in the crooks of her arms, her hands, her feet, for the first time they gently ask if I can step back to make room. I can come right back and they’ll hold her hand until I do, it will just give them a little more elbow room. Sure, that’s reasonable. Makes sense.

I step back and watch the crowd swallow Tula until I can’t see her anymore, and I noticed Mom made it up. I have no idea how long she’s been standing there, so absorbed as I was by the situation. She’s pale and visibly shaking.

Oh. WE’RE the code blue.

Whatever they’re doing to Tula, I can’t see, but I do know: she’s not crying. Not fussing. Not making a sound.

Michael arrives, and we stand feeling impotent and superfluous, waiting. The crowd dissipates and I use the opportunity to sneak back in. There are purplish bruises forming on the right side of her head and on the right side of her neck. Goes with the track marks up and down her little arms. But the IVs have been placed—one is on her right elbow and the other on her left hand. Both have been thoroughly taped to boards so she can’t mess with them, but she doesn’t look much up to playing at the moment. She’s down to just a diaper and you can see by her stomach sucking in how hard she is struggling to breathe. The pulse-ox monitor taped to her big toe tells me that she’s getting enough air, but she is working hard for every breath.

Without her clothes, you can tell how very small and vulnerable and fragile she is. She is unconscious, which is the most frightening kind of blessing, but even so, you can see how hard she is struggling. She’s a tough girl, and she’s not going down without a fight.

Everywhere, there are people, people working on her, fetching things, watching, waiting. I see all of this and think:

It was just an ear infection.

Part 2 to Follow

--Andie