When Bubby Visits ICU

Whenever Jaycee is in the hospital, we have always brought Elijah, who we call Bubby, in for visits. We have several reasons for doing this: we want him to know why we aren't home with him, hospitals are part of Jaycee's life so he needs to get use to them, and we miss him & want to see him.

My husband and I have tried to set some ground rules in order to bring 5 year old Elijah to visit his sister without scaring him. He doesn't visit if Jaycee is in any danger of something going wrong that day.I don't want him there on a day she is being intubated seeing me cry and getting worked up. He comes after the storm. That being said, if he visits and seems uncomfortable, he gets to leave the room. We do not force him to look at her or touch her if he does not want to. We try not to have him at the hospital too much. It is boring on a good day and there's not much to do here if you are well. But we are blessed that this hospital has a playroom/daycare for siblings open a few hours a day, so he has somewhere fun to go. And as he has gotten older, we give him opportunities to ask questions about things on Jaycee or about her.

So as I sit here in the intensive care unit for 16th day, I am reflecting on Elijah's visits this time. This hospital stay, like so many others, began with us leaving at midnight while he slept in his bed. We woke up poor grandpa to come stay with him so he wouldn't be jarred awake with bad news. Shortly after admission, Jaycee ended up in ICU because she needed to be on a bipap machine constantly due to the rhinovirus and pneumonia attacking her lungs. When that wasn't doing the job, Jaycee was intubated for over a week. Now, she is still recovering but doing much better.

Elijah had his first visit on this admission when Jaycee was stable on the ventilator. His grandparents brought him over for a short visit. He greeted me with hugs and small talk. Then I showed him his sissy. Bubby was prompted to ask any question he wanted.

The monitor, as always, caught his eye. He asked me what all the numbers meant, which I explained one by one. Then he asked me what a few of the IV lines were. Since he didn't mention her breathing tube, I told her how that was helping Jaycee breathe. Then he said he had 1 more question. "What's those scissors for on her bed?"

The nurse said, "We call those gizmos. Want to see one?"

Elijah happily takes the prize and starts hooking and unhooking them to objects. That was that.

Later, he asked to sit in bed with Jaycee and watch tv with her, which is what they do at home. I put him at the feet of her bed and positioned a pillow between him and her so he had a visual boundary on where he couldn't cross. It was great to see my kids in close proximity once again.

But it was the elevator ride that sparked the most interesting conversation. He read the list of floors, what was on each, and asked what some of them meant. Then, he asked, "What does the PICU mean?"

"It's the pediatric intensive care unit. That's where the kids that are really, really sick are."

Immediately he said, "But that is where Jaycee is. I didn't know she was really, really sick. You never told me!"

"Sorry. I just thought you knew that because Jaycee had a bunch of tubes and wires in her. But anytime Jaycee is in the ICU, she is really sick!"

His voice sounding concerned then asks, "Why does she get so sick? I never have to go to the children's hospital."

That's the million dollar question. I do my best to reassure him by telling him all the things I try to tell myself when I am scared about Jaycee. I also remind him that Jaycee was born with sick lungs (asthma, obstructive sleep apnea) so colds are much harder on her than any of us.

When the questions stop and we are back standing by Jaycee's bed, he talks to his sister. In a soft voice he tells Jaycee he has missed her and that he wants her to feel better. He holds her hand and encourages her the only way a bubby can. And even though this is a very sweet moment, I hope we never, ever relive this again.

My Privacy & Other Things I Miss in the Hospital

I'm still in the intensive care unit with my daughter. I have practically lived here for the past 11 days. Hospital life is different from regular life.

Here are some simple things I miss in no particular order while I'm in the hospital with Jaycee:
1. Walking around barefoot- In ICU you are required to wear shoes at all times. At bedtime, I can get by with just socks. But my feet get tired of wearing shoes for hours and hours.

2. Taking a shower in a clean bathroom- There's a lovely parent lounge shower here. I'm grateful for it but you can imagine the state of a bathroom that multiple people use. I just try to get in and out as quick as possible and not think about it.

3. Performing Jaycee's care- At home, I help Jaycee get dressed, do her medical care, and do all the little things for her. Here, I am allowed to help move her and assist with diapering. It is an odd feeling just watching nurses do some of the things I normally do while I sit on the sidelines. But right now, the sidelines are where I belong.

4. Having the ability to fix my hair- My curly, frizzy hair is hard to manage under the best of circumstances. Here, I don't have access to all my styling products or straightener. I don't have the energy to use them if I did have them anyway. I pretty much wear my hair in a
pony tail most of the time.

5. Having control over my daily schedule- In the ICU, you are suppose to arrive prior to 730 am when rounds begin. So breakfast and all the morning stuff has to be done before that. Then my husband and I wait for the doctors to come by and round on Jaycee. They could come any time between 730 and 11. So we are forced to wait. The rest of the day is all dependant on Jaycee and activity in the hall. Meals, bathroom breaks, and small breaks outside the room all depend on if Jaycee is calm and stable. If some other child is having an emergent problem, the unit may be closed making it difficult to get back in if you leave.

6. A bed to sleep in- One parent is allowed to sleep in Jaycee's room. There is a chair that pulls into a bed. Really it isn't too bad but I miss a nice comfy mattress with my own fluffy pillows.

7. Privacy- In the ICU, the people need the be able to see into Jaycee's room at any time. So her door is always slightly opened. The door is glass anyway so it doesn't matter if it is open or not. Staff are often in and out of her room doing their necessary duties. If you need to have a good cry or make a phone call, there is not a good place for that privacy unless the parent lounge is empty.

8. Being able to see my son everyday- I miss my son who is at home being well cared for by family. He comes over for occasional visits right now. We talk on the phone but it is hard being away from him.

9. Having a home cooked meal- Eating in the cafeteria and at local restaurants gets old quick. I miss our meals together as a family even if they are just hamburger helper occasionally.

10. A dark room- Because this is the ICU, the rooms and halls are never completely dark. The parent lounge is never dark either due to problems with theft, so there's no darkness for good, solid sleep unless we can bravely leave the hospital for a few hours.

11. Getting love from Jaycee- Since she's sedated and has a breathing tube down her throat, I really miss her hugs, kisses, and cuddles I normally get multiple times a day. I miss hearing her attempt at 'love you momma.' For now, we have to settle for holding hands.

The days are long here with many things that aren't ideal but I keep reminding myself it's only temporary. This too shall pass. And I hope it passes soon!

How the ICU is like a Haunted House

As I write this, I'm sitting in the intensive care unit listening to machines assist my daughter's breathing. This is the 6th time (at least-maybe more) Jaycee has been in ICU for an illness or emergency. The worst ICU stay included 3 weeks on a ventilator. The "best" ICU stay for her was just 1 night after going into respiratory distress after a procedure. We are no strangers to the ICU though I would love to never return here again.

If you have never had a child in the ICU, let me paint a picture for you. It is like a haunted house. You know going into it, that something bad is going to happen that will scare you. Even when there is nothing scary at the moment, you are on guard anticipating the next scare. You know absolute relief will only come when you leave that place, but you don't get to decide when you exit.

The characters in this haunted house don't scare you with axes or other weapons. It's syringes, IV sticks, tubes, machines, suctions, diagnoses, or just the threat of these that makes you scared.

A new parent coming in to the ICU is like a small child who is easy startled by anything in the haunted house. Me, I've been through this haunted house a few times. There are some things that don't make me flinch at all that would probably horrify first timers. Being on bi-pap continuously doesn't bother me much although I know it's not ideal. Holding my child down to assist with a necessary blood draw or cannula placement is second nature to me. The ventilator, now that machine is one that terrifies me. It means she's dangerously close to an exit I hope I never see. Watching the placement of really long tubes isn't pleasant either such as placement of a ng feeding tube or a PICC line. I find a way to shield my face so I won't see what's happening.

There are no ugly decorations or darkness in this place. In fact, this place is rarely ever dark. Instead, this haunted house has simple monitors that display numbers that can give you a sense of relief or send you into a panic. The alarms the beep, buzz, ding, and sound at unexpected times can be frightening. The images of your child enduring such awful, unimaginable things as a result of those alarms will scare moms like me for weeks, months, even years to come.

But not everything in the ICU is terrible. There are some really nice people here. They are doctors, nurses, residents, and respiratory therapists to name a few. They mean no harm when they are part of the scary moments. In fact, they are trying to save your child's life which sometimes calls for things that make us parents squeamish.

So if you ever find yourself in this place waiting for an exit, do whatever it takes to fight off all the fears, imagery, bad news, and worst case scenarios. Find a positive song, verse, person, or activity to help you through. It won't be fun. It won't be easy. But when you leave that haunted house holding your child's hand, it will all be worth it.

When I Wish We Were Chameleons

Sometimes, I forget things.
I forget that Jaycee looks different.
I forget that her riding in a stroller is an odd sight for other children.
I forget that her tongue is out of her mouth most of the time.
I forget that she often makes weird noises.

But, then I'm snapped back into reality and I can no longer forget.

We just took our camper out for the first time last week. We spent months waiting for school to end to have the time to take our first trip. The kids were excited. They each claimed a bed in the camper months ago and were ready to go.

The first trip out went pretty much how you would expect your first trip to be. We were about 6 feet short of reaching the water hook up. I was short two blankets and one set of sheets. Nothing major went wrong thankfully.

My husband happily cooked on the campfire. Jaycee tried s'mores for the first time, which she absolutely loved! Then after dinner, we decided to head to the camp playground. It wasn't a long walk but Jaycee's feet were covered with blisters, so we let her ride in her stroller over to it.

As soon as I wheeled her on the playground, a group of very inquisitive children ranging from 4 to 12 years old approached us.

"Is she hurt? What happened?"

Followed by, "Does she have autism? My brother has autism. He's in special education."

I replied, "No. She has Down syndrome." I had never been asked if she had autism before. That was a new one!

Then the youngest in the group asked, "Why is her tongue hanging out of her mouth?"

"It just does."

"Can she talk?" was his follow up question.

I gave my patent answer, "She can say a few easy words like mama or dada but she mainly signs or uses other ways to communicate. Her mouth just doesn't work right."

"Why not?" asked the boy.

I didn't have the energy to answer him. At this point, I was trying to back away from this nice but talkative bunch and work my way to an empty bench. Finally, they left me alone. They tolerated Jaycee's presence on the playground but the children were discussing her Down syndrome and noises among each other.

Then the strangest comment that I have ever heard from a child's mouth about Jaycee happened: "She can't help it. She has Down syndrome. A lot of people die from that!"

"I'm ready to go," I whispered to my husband.

He told me to relax, to remember that they were just children, and that they were just asking questions. He was right.

But, these are moments when I wish we were chameleons. I just want to blend in with everyone else. I don't want to be noticed. I don't want to be questioned about our family differences.

I wanted to go on our first camping trip just like any other family. I wanted my kid to climb a ladder and go down a slide without stares and comments.

There are places where we are chameleons, however. Jaycee is a chameleon at school where everyone knows her and understands her. At events like Special Olympics or Down syndrome walks, we blend in. At the church we have attended for the past 4 years, we are chameleons even when she's standing in the parking lot screaming. At our local gas station, we are chameleons even as Jaycee races to the juice cooler and back to the counter cutting off anyone who may be standing in line.

I'm thankful for these places where we feel like everyone else. It makes the times when we aren't chameleons much easier!

Jaycee's first s'more. She loved it!

My Life As A Reality TV Show

There are many shows on television now featuring all sorts of families. I have no desire to be one of them. But, sometimes I wonder what my life with my husband and two kids would look like on TV. Probably something like this:

There would be moments of education for the audience:
People would learn about Down syndrome and her heart conditions. As I use her nebulizer, bi-pap, and vest airway clearance machine, I can explain why Jaycee uses each one of them for her asthma, obstructive sleep apnea, and lung cyst. Her "talker" communication device would be explained as well as childhood apraxia of speech.



There would be moments that would make the audience go "aw":
Like the time Elijah declared one day when I suggested he would live with a wife when he's older, "I don't want to live with my wife. I want to live with my sister!"  Or how about when Jaycee squats behind the kittens and picks them up so proudly with a huge smile on her face. Better yet, an "aw" worthy moment would surely be when Elijah crawls up on his sister's lap when they watch movies together with her kissing the top of his head periodically.


There would be intense moments-those moments where something awful may or may not happen but a commercial break leaves you wondering:
People might gasp as Jaycee breaks free from my hand and runs across a parking lot. Cameras would catch my split second decision of staying with my son or running after Jaycee. Then there's Jaycee's yearly cardiology tests where we learn if Jaycee's valve leaks and pulmonary pressures have changed at all. I know that moment always scares me! 


Of course, there would be times when the audience would judge my parenting:
When Jaycee watches Barney on television while watching Kipper on her Kindle, I'm sure there would be Facebook comments about me. Other comments might come from me caving into Jaycee's requests for seconds at meals. For sure, I would be judged as I try to unsuccessfully respond to one of Jaycee's drop-and-flops (when Jaycee sits down and refuses to move). Obviously, I don't always know how to stop her behaviors.


And then, there would be times for the audience to get to know me personally:
If the cameras followed me to work as a pediatric speech-language pathologist, people would see the irony of someone like me having a child who can barely speak. They would also see how my home life and work life intersect making some days mentally exhausting for me. People would get tired of hearing, "I'm tired," come out of my mouth since I say it pretty much all day long.  They would see me waking up early so I can read my Bible before the kids get up. They would see me pray in the car and ask God for help and peace multiple times a day. Hopefully, they would get a sense of who I am--That even though raising Jaycee is at times challenging, I am a proud and happy mom to two children that I love dearly. And this reality is just fine with me.