How to Stay Safe AND Sane in the Face of Disease -- Advice from a NICU Parent

You've just been told school is cancelled. For weeks. To prevent the spread of disease.

I'm sorry friends, I've been there. When we were told that Jonathan needed a third winter of isolation, I wanted to cry. And it was the best choice we could have made. You see, to a micropreemie, RSV is a lot like COVID19. And we did not want to see our little one intubated again.

Isolation for a micropreemie meant this: No large gatherings, no church, no grocery stores. If we broke these rules, even once, even just to attend a wedding of a loved one, we risked him loosing much needed in-home therapies. So we never broke these rules.

And it worked. When we did take Jonathan out of isolation for his first year of preschool, he got sick. He was hospitalized and he needed oxygen. But he didn't need to be intubated, he wasn't at risk of death, and his hospital stay was minimal. We'd given him time. And sometimes, in the case of micropreemies & the new Coronavirus, time is a huge gift.

HERE'S WHAT YOU NEED TO KNOW ABOUT HOW TO STAY SAFE AND SANE WITH SMALL CHILDREN AT HOME AND SEVERE ILLNESS IN THE COMMUNITY.

IN GENERAL:

• DO take health professionals seriously. They know what they're talking about. 
• Don't gather with lots of people
• Limit time in grocery stores & don't take small kids to the store. Let's face it, they're not good at not touching things.
• Stop the spread of this coronavirus. We didn't get the flu shot when Jonathan was a micropreemie because we were afraid of getting the flu -- we were protecting him from exposure. We used sanitizing wipes at the grocery store, hand sanitizers at church, and practiced social distancing at work -- not because we were afraid of being sick, but because we were afraid that if we got sick, we'd be exposing HIM to the illness. Now the tables are turned. Kids are fighting coronavirus well. But adults aren't. And we need to stop the disease. We do that by stopping all exposure.
• DO scrub in. Take your rings off for the season. Any time you enter a new building or come home from work, scrub hands up to the elbows and sing the ABCs as you lather. Get under those fingernails. Keep using those good scrub-in techniques every time you use the restroom or a tissue, etc. Get some good hand lotion so that when your hands get all dry from all the hand washing, you prevent cracking & bleeding.
• Teach your kids good hygiene skills. Wash, wash, wash. When you eat, when you use the restroom, when you touch your face. Stay clean.
• Social distancing works. If you can't touch their outstretched arm and they can't touch yours, that's a good amount of distance. It doesn't mean don't cuddle with your kids, they need cuddles to feel safe and loved. Just ONLY get that close to your kids -- distance yourself from others.

IF YOU HAVE AN IMMUNOCOMPROMISED FAMILY MEMBER:

• CONSIDER changing clothes when you get home. When our daughters came home from school or when we came home from work, we changed right into our PJs and scrubbed in. We didn't touch the isolated micropreemie until after we got changed. It became part of our routine because RSV lived on clothing. Coronavirus may be different, but it is an easy step to take. 
• Don't take that family member shopping with you. Just don't.
• If you feel sick, even just a little bit, limit or eliminate exposure to that family member. For us as parents, this meant swapping who took care of the little one.
• Practice social distancing. Where possible, keep the family member six feet away from others.

SCREENING VISITORS

Grandparents came over, my daughters still had occasional play dates, and my son had in-home therapy three times a week. How did we manage? My rule of thumb was fairly simple:

• Tell visitors to stay away if they're feeling sick.
• Ask visitors to change clothes and scrub-in.
• If potential visitors think these measures are extreme, just don't have them over. It's a sign that they're probably not taking illness as seriously as they should.
• If a colleague didn't know how to cover a cough appropriately and used his hand instead of the crook of his arm, I noticed. If he said "I just have a small cold, it's okay." I remembered that RSV looks like a small cold in adults, and as soon as he left the office space, I sanitized EVERYTHING.
• Coronavirus is similar. It doesn't look like much in some, and can be deadly in others. If people are downplaying their own symptoms and not keeping to themselves, then I need to keep myself away from them.

BUT HOW DO I STAY SANE?

• DO go outside. Perhaps don't go to the farmer's market, but if you have a back yard or even just a patio, play there.
• When it gets nice outside, OPEN WINDOWS. Fresh air does wonders for the soul.
• Play music.
• Limit exposure to others, but don't cut off all ties. If people are well, haven't been exposed to those who aren't well, and are willing to scrub in -- then allow small groups to visit. Keep groups smaller than eight, keep social distancing, and use your best judgement about activities. Again, back yard activities are great. 
• Facetime. Use technology to connect to other people. Not just by facebook posts, but by real interactions like (remember when?) phone calls.

AND HOW DO I KEEP MY KIDS SANE?

• Have some structure in place. But keep it loose. 
• Tell kids they must do two chores. Bonus there: then you're house is clean and you feel more in control.
• At the same time give kids a chance to just play, knowing that (like summer break) too much freedom just leads to boredom and cranky kids.
• Plan ONE creative activity a day. Don't over-plan or you'll burn out.  I hate pintrest, but if you're so inclined, seek out pintrest for ideas.
• Play-do
• Board games
• Make a science experiment
• Plant a garden
• Paint a room
• Create box monsters
• Have some time focused on school / educational goals.  If your school isn't moving to online learning, you can still help kids meet their goals. You might not have time to homeschool, but have your kids touch on math and reading/writing skills each day. Have 15 minute refresher sessions. Make it fun, or make it the chore they have to do before they can play Minecraft. Either way, keep the brains going. You and your kids will feel better with some of this structure still in place. And small amounts of time focused on learning really does make a big difference. [When Jonathan was in isolation, we made sure there were five minute blocks of his day scattered throughout where we practiced the skills that occupational and physical therapists had as their focus for that week.]
• Go for walks and bike rides. Invite friends along. It's a great way to get outside, and as long as you're not in a busy city, you're probably practicing social distancing.
• If your community doesn't have active cases, invite a friend over at a time. Don't have a huge party, but kids can still have play dates as long as they're scrubbing in. In some cases, this is inevitable as family and friends are needed to cover childcare responsibilities. Just keep the group small and have hand sanitizer in place.

Note: I am not a healthcare professional and all advice should be seen as non-medical. Use reason and seek the advice of true professionals.

How a third year of isolation was the best thing that happened to us

If you are a parent of a preemie, especially a micro-preemie, then you know about isolation. This year I've decided that it's the best thing that has happened to us. It took me until now to come to that conclusion, but I've no doubt that it is grand. If you are sinking in winter blues, take heart. It's worth it.

And if you are a JAM fan -- this post acts as an update on his growth and development. Enjoy, and thanks for your part in his story!

--------------------------

"Go, go!"

Earlier this fall I had it all figured out. Play groups, story times at the library -- I had arranged it so that every other day of the week held an adventure for me and my former preemie. I figured he deserved it. Two winters of isolation for a kid who loved people -- it had been rough. But, now he was two and we were DONE. No more synergist shots. No more isolation. Sure, we'd be careful, we'd wash often, we'd keep him away from sick people as much as possible, but we didn't have to bend our world around his preemie lungs anymore. We could go to church as a family, because he could be in the nursery. We could go to story hour at the library. We could arrange regular play dates. We loved the freedom.

Sure, he got a cold every other week, but kids this age do. No big deal.

Except that for him the colds took forever to go away. He'd barely recover from one before he'd catch the next thing going around.

And by mid-October, all of that illness moved in to his lungs.

He had pneumonia.

We caught it early enough. Armed with antibiotics and inhalers, we kept him out of the hospital. But that was it. His pediatrician put her foot down.

"No more nurseries. No more grocery stores. No more restaurants. No more libraries." Our son was back in isolation. "Just through the RSV season," she said. In our area, that's nearly half the year.

It felt like a death sentence. I wanted to cry. No, no no. This wasn't fair. My son FINALLY had it all together. Eight surgeries his first year left him weak. In his second year, failure to thrive due to undiagnosed acidosis left him extremely lethargic and small.

FINALLY we'd figured it all out. He's on the right meds, he's growing. FINALLY he's acting like a normal toddler, curious and energetic. Finally I had hope that he'd start to catch up. and being around people only helped - because if my son loves anything, it is performing for a crowd.

His doctor was taking away that crowd.

Did I mention that I nearly cried? Because I did. Over and over again, the isolation hit like a lump in my stomach. This wasn't fair.

Jonathan didn't help things. He'd crawl to the sliding door and point out at the cold snow falling and say "Go, go! CAR! Going? Go, peee [please]?"  He'd watch his sisters leave to do fun things, and I could tell that with all his being he wanted to follow.

And again I'd have to tell him we couldn't go, not anywhere. It was too cold to walk, and being in a new town meant that we didn't have any other friends homes to visit. No other places were safe for him.

On Sundays we split squad again, like we'd done for the previous too years, One of us took the girls to church, one stayed home with JAM. And no matter where I ended up, church or home, I fought the tears. It is worse this year, since a new town means a new church. We know nearly no one, and I'm a certified social introvert. I want to know people, but it small talk drains me. Twice a month I meet the same dozen people over again, and still do not remember their names. It is so defeating.

But ISOLATION IS THE BEST THING THAT HAS HAPPENED TO US

First of all, forget RSV. Have you seen the statistics on this year's flu virus? It wants to hit kids like JAM. And SOOO many people around us have gotten this flu. But he's still well. I think because he has not been exposed to the germs. At our last weigh-in with the doctor, I thanked her for isolation for just this reason. (She, in turn, marveled at how many words he had started saying.)

Second, a healthy toddler is a more active and curious toddler. I didn't realize it until he got over his pneumonia, but this kid loves to move. With the lethargy from his acidosis (RTA) last year, I guess I'd just sort of assumed that he was a laid back kid. This fall as he fought off cold after cold, I thought he was ridiculously alert and active compared to before the RTA diagnosis. But (little did I know) - he was still operating at less than 100%. 

Thanks to isolation, my son is healthy, active, and curious. Sure, he still hates it when he is stuck at home, but he is growing by leaps and bounds.

Today proved that to me.

A month ago we had a consult for an in-home physical and occupational therapist. "He can't release things," I explained, "he will only throw them. I know this frustrates him, but he just can't figure out how to put things down gently. He can't do puzzles. He has a hard time sorting shapes. He walks, but he can't stop and just stand unassisted, he won't hold anything in his hands while he walks, and he won't bend over to pick something up" I said. "He can only climb furniture if I put a cushion down so that he can climb half way at a time. He doesn't talk a lot."

The occupational therapist stopped by today. As soon as she walked in, J looked up and said "Chechur!" ["teacher!"] and got a big grin on his face. He'd never met her before, but I told him that a teacher was coming. He had remembered. Immediately he started showing off. (He's figured out that teachers are there so that he can perform for someone.)  He walked around the room over and over again. He STOPPED mid-walk to redirect his steps another direction. He picked up his favorite car and brought it to the windowsill. Reader, this is a big deal. HE WALKED with a toy!

The elephant shape sorter. Photo and sorter by infantino.

When he tired of walking, he climbed up on a chair (no cushion for assistance needed, thank you very much) and took his elephant shape sorter out and started sorting shapes. The OT saw the shape in his hand and said "that's a circle. Look for the circle" and he turned the belly of the elephant past a triangle, a hexagon, and a square until he got to the circle. Then he put the circle in the elephant. That's right, he RELEASED a toy.Then he tipped the nose of the elephant to get the circle back out so he could do it again.

I was floored. He was doing everything we told the therapists he couldn't do.

Not that he's suddenly miraculously on track, he still has a long way to grow, sensory issues to overcome, and a core to strengthen -- but this month has been incredible, unbelievable, fantastic.

And I have no doubt that he would not have gotten here without isolation. Staying well has kept him growing and learning. We have three and a half months to go, and while I'm not excited about the cold snowy days, I am excited to see where he will be when we reemerge with the tulips.

Surviving Isolation - Activit(ies) of the week #3 - Seven sensory sensations

The post below comes to us by guest blogger, Becca. Follow her daughter's story here: http://woodra01.wordpress.com/

Thank you so much, Becca, for sharing your ideas today!

---------------------------------------------

My little one, Charlie, was born the day she reached twenty six weeks gestation and weighed 790 grams. She is almost two years old now but continues to struggle with motor delays and sensory issues.

These are a few of her favorite home activities I use to help her with the delays:

1) Pillow Obstacle Course: When Charlie was a creeper and/or crawler, I used couch cushions, decorative cushions, and bed pillows to create an obstacle course for her to crawl over. Now that she is starting to walk, I stack the pillows a little higher (make sure they are steady), create a three pillow tunnel, or have her walk over a pillow (remain close by to catch any tumbles).

2) Rice or Bean Hunt: I use a plastic storage container, but a shoebox or a big pot will work just as well. I fill it with rice, beans, quinoa, millet, or anything that I have on hand. Then, I bury small toys in the container and leave a few visibly sticking out. After a prompt such as “Where’s the duck? I’m going to get it!” Charlie loves to dig through the container to find her toys.

Image courtesy of
http://woodra01.wordpress.com/

3) Textured Fabric Exploration: I gather different types of fabric items such as fleece, knit sweaters, towels, flannel, nylon, etc and place the fabrics in a clothes basket. Charlie and I explore the fabrics. I ask questions like “Is it scratchy? Is this one soft?” We also use the fabrics to play games such as peek a boo or to hide toys.

4) Pasta Sorting: Charlie and I make a game of putting the long pieces of uncooked spaghetti in to empty water bottles or soda bottles. Containers with wider mouths like a the cardboard center of paper towel roll or a jar can work for kids that need it.

5) Homemade Instruments: I make this one up each time we do it. Sometimes, I fill a container with a lid (tape it closed) with beans, rice, or anything that will make a rattle noise. For a quick option, I grab a pot or pan and a wooden spoon to make an instant percussion instrument. Charlie plays the instrument along with her favorite musical video.

6) Window Markers: Charlie likes to use washable markers, white board markers, or markers made specifically for windows on our sliding glass door. Sometimes, I draw and encourage her to imitate my drawing motion.

7) Stuffed Animal Safari: Charlie has a large number of stuffed animals. I place them in different locations around the house. Together we go on a safari! I say something like, “Let’s go find the bear! What does the bear say?” and we look around to find the selected animal. In the process, she climbs up stairs, practices her walking, and we work on her speech. After she finds the chosen animal, we place it in a collective area. When we finish, we recap the animals she has found and go over sounds.

Surviving Isolation - Activity of the Week #2 - Sensory Kitchen

Image from freedigitalphotos.net, Serge Bertasius Photography

Today is one of those days that doesn't feel like an isolation day. Actually, that's been this whole week.  In addition to early intervention, occupational therapy and physical therapy (JAM's normal weekly appointments) we've also gotten to see his ophthalmologist, pulmonologist, and had an MRI done (not a big deal, but a time-consuming one).

So we haven't really been isolated. We've been busier than I was when I had an infant and a toddler and was a stay-at-home mom who could actually attend story time and go to the grocery store.

Thus, I pass off my weekly prompt to a micro-preemie mom in arms, another mother who delivered a baby in July instead of November the year Jonathan was born.

The title of her post is "Making Blueberry Sour Cream Bread in Jax's Sensory Kitchen"

Her recipe looks delicious, her plan flawless -- so head over to her blog and learn how to make the most in a sensory way of these cold and grueling days.

Here's what I like about her post:
1. It smells good
2. Your kid can play with the ingredients -- either in a plastic bag or out (depending on if you want to use the ingredients for anything)
3. For potentially oral-adverse kids and kids with processing disorders, playing with textures and smelling the results seems IDEAL.

By the way, so -- you may not have all the ingredients in your house (particularly true if some of your family is vegan, like mine) -- but even so, LOOK, you can do this with ANY recipe. (Let's be honest, though, I really really want to make THIS recipe after reading her description.)

Thanks, mom of Jax (see, even a similar name! I love this blogger!) for your great ideas. Stay warm.

Surviving Isolation - Activity of the Week #1

We are in our second year of isolation.  For us that means JAM doesn't go to public places (with doctor/therapy appointments and a twice a week in-home daycare being our necessary exceptions) and we limit the amount of people that come in to our home.

Last year things were even tighter. We had a nanny to watch him while I worked half-time, and he qualified to have a visiting nurse administer shots. It was only about once a week that we brought him out of the house -- usually for specialist appointments. Our girls did and do scrub in when they come home from school, and last year we instituted a "jammies on, school clothes off" rule as soon as they walked in the door.  It helped. No RSV.

(In case you think I'm insane for all these rules, read more about RSV and micro-preemies here. When I was pregnant I was sure I wouldn't be even bothering to dust off pacifiers before sticking them in my third child's mouth. That's before I had a medically fragile micro-preemie.)

-------------------------------------------------------

SO -- in the interest of helping caregivers of premature babies stay sane during the winter months, Wednesday JAM sessions for the month of February will be a way to celebrate all the fun that can be had at home.  Each week we will showcase one game that a baby/toddler might like to play. Since I DON'T have the ability to go shopping (see the first paragraph), every activity will:
1. Use common household items.

And, since so many of the kids in isolation are still developing gross/fine motor skills, these games will also:
2. Be able to be performed in a high chair or bumbo seat (most likely - I'm opening this to guest bloggers, and they can do whatever they like) and
3. Be appropriate for two month to two year olds

They will all be JAM tested-and-approved (or, in cases of guest bloggers, guest-blogger-baby-tested-and-approved) and I will post my rankings and JAM's rankings at the bottom.

ENJOY! And if you try these, please comment below so we can hear how other kids responded. (Anonymous commenting is enabled, so you don't have to sign-in or anything.)
------------------------------------------------------

ACTIVITY OF THE WEEK - WEEK 1
PUTTING THINGS IN THINGS.

Needed:
Shallow bowl or muffin tin
Objects that are (a) baby appropriate (b) easy to grab and manipulate for baby (not choking hazards).

Set up & "game":
Put bowl or muffin tin in front of baby.
Demonstrate dropping objects into bowl or tin.
Let baby pick objects out of bowl. Encourage (but don't expect) baby to put objects back into the bowl.

Variations:
For a challenge put a plastic lid on top of the bowl. Cut a hole in the lid that is larger than the objects given to the baby. Encourage baby to find a way to put the toy in the bowl even with the lid on.

Notes:
Baby will be able to pick objects out of a bowl long before they are able to drop objects into a bowl. Don't be surprised if after they get an object in each hand, the next several minutes are spent banging the bowl/muffin tin or (if your kid isn't oral-adverse) chewing on the toy. (I don't think I need to say it again -- but make sure the toy/object is something the child won't choke on...)

Also, we didn't do it below, but it'd be super easy to throw a dish cloth over the muffin tin or bowl and start to teach some object permanence (or "play peek-a-boo with the objects").

--------------------------------------------------------
JAM DEMONSTRATES
The above sounds fairly plain, obvious, and probably not very fun. But as JAM (and his sisters) demonstrate, it's actually the BEST-GAME-EVER. (Reminds me of how kids like the box a toy comes in almost as much as the toy...)

We used:

• Blue plastic wash basin inherited from JAM's NICU stay
• Plastic bottle tops also from the NICU (Our NICU provided lactating mothers with sanitized storage bottles. We didn't save the bottles, but we did save the tops, because I figured we'd be able to find something to do with them.)
• A muffin tin

 First we practiced putting bottle tops into a plastic bowl. I tried to put tinfoil on the top of the bowl and make an opening, but that does NOT work. So don't try it. The tinfoil fell apart and would have been a choking hazard. So, yes, stick to plastic tops if you're going to create your own opening.

Then we took out a muffin tin.  First we sorted, then we stacked. Then the girls joined in the game. The decided that they were making muffins, which made JAM a bit hungry (even though he's never eaten a muffin, he's often thought they sounded like a good idea).

Sorted

Stacked

Sisters stole my game, but I didn't care.

Then I started to care...

So we all played together. Mom has a LOT of bottle tops.
I thought our bottle top muffins looked VERY tasty.

Believe it or not, it took about 20 minutes before this inevitable thing happened:

I took a few videos to demonstrate how JAM felt about the activities.  YouTube is still processing the videos, but they will be available here and here.

-----------------------------------------------------

Overall Activity Score:

5/5 for ease & flexibility (you could probably use this to teach colors/shapes as well, and can be done with independent play or as an activity together to teach many things.)

5/5 for cost (free!!!)

4/5 for ease of cleaning. There were LOTS of bottle tops on the ground after this activity

JAM'S SCORE:

3.5/5  This toy didn't make me laugh. I like to laugh. But it DID make different cool sounds when I hit different parts of it together. And I had to concentrate really hard to do this puzzle. I worked at it for a long time before it got boring. And then my sisters played with me, so that was a bonus! For once I understood one of their games!

Mom's Score:

5/5 Easy to clean up, he can play in the kitchen, and it kept his attention for a long time. If I hadn't been holding the camera, I could have done a load of dishes while talking to him about what he was doing. LOTS of possibilities for expanding on the theme. 

(You can't tell it on the videos, but we did some talking together about what he was doing.  I just hate hearing my own voice on film, so I cut it out in the edits.)

Hope this inspires!

Please post your comments/ideas/inspirations or similar things you've done below.

I am opening up this blog theme to guest bloggers this month (I've already got one lined up! So excited!) so if you either:

(a) have a blog you'd like me to link to

-or-

(b) want to guest-blog about activities you and your child have done, please send me a note at momofa23weeker@gmail.com

Have a fantastic February!  Make the best of it.

RSV season has begun

That's right. In our household, we are declaring the beginning of RSV season.

We now move back into our second and last season of isolation. Until May we will have no unnecessary outings, no church, no grocery stores, and no restaurants for JAM. All in the name of his lung development and our desire NOT to see the inside of the hospital.

Our visit as a family to church last week, despite precautions, had JAM coming home with a cough, rattly lungs, and higher respirations. He's ok, but it is a good warning. Snow(!) is in the forecast for later this week. People's windows are closed and I predict RSV will start to hit soon.

Thus, a week earlier than aanticipated, we go into hiding.

He is happy about the new sign on his car seat. A reminder for doctors' offices.