Wednesday, February 26, 2014

Life catching up with us

Apologies. There will be no post giving a great idea of what to do in a season of RSV today.

In an attempt to get JAM the best care he needs (and protect him from germs these first few years), my husband has accepted a new job that allows me to stay at home for the time being.  I am currently working half-time.

Steve's job doesn't start for a few months, but the housing market is really very good right now, so we've been encouraged to get our house on the market this week. We were told this exactly six days ago. The realtor comes back out to check out the house again tomorrow.

So instead of trying to find things to keep us busy and sane, I find myself insane with the tasks of cleaning, painting, de-cluttering, and fixing. All while trying to keep most of the paint fumes and chemicals out of the air that surrounds my CLD baby.

It sounds awful, but thanks to the help of my parents and the amazing youth group at my church (yes, I broke quarantine again and allowed a dozen high schoolers to tromp through my home with cleaning supplies), we think it is probably possible.

In other news, I'll have a practically empty home by the end of this week, so I can finish my installment of activities for RSV season next Wednesday.

Wish us luck!

Wednesday, February 19, 2014

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:

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

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.

About anxiety and depression - don't try to eat parfait when you have a stomach bug.

Today's post about surviving isolation will be published this afternoon. For now, however, I wanted to pause and take a look at another, uglier, part of this winter for me. The return of depression and anxiety. I think being vulnerable about mental illness is an important first step to helping society rid it of the trappings of failure that often come along with this sort of fight. So, I share, in hopes that by sharing others will share and understand that this sort of thing is both normal and treatable, so that they or those they love do not have to fight this illness alone.

I struggle with an anxiety disorder. Several of my friends battle depression. They're close cousins, and they're often misunderstood.

Let's look at them like illnesses.

No, better yet, let's look at a commonly understood illness. The stomach bug.

Have you ever had a bad stomach bug? One where you just don't want to eat anything? And you're weak because, well, you haven't eaten anything?  And if you try to eat anything, you can't keep it down?

Picture trying to explain this to some friends, friends much like you except that they have never encountered nausea, doesn't know what it is to feel the stomach flu.

They hear you're sick and weak, so they bring you some soup.

You pick at it, maybe eat three bites, then set it aside. It's good, but the nausea is stronger.

"But soup ALWAYS makes people feel better," they say, "you should eat it, you'll be stronger.

"When I had a cold last week, I went on a soup diet," another one says, "I felt better by the end of the week!"

Seeing that you won't touch the soup, they decide it's probably not tasty enough. So they bring you a parfait. Because "everybody likes parfait."  They ask you what else they can bring you to get you to eat. You can't think of anything.

The thought of parfait makes you feel sick. But they can't understand that (having never experienced nausea) so they leave it on the center of your table and say they're going to go get you some ice cream. Because, one says to you, "when I was feeling really bad because my boyfriend broke up with me, I ate a tub of ice cream and felt better. And that's the only time I've had that weird feeling behind my nose that you're talking about -- like the nausea thing -- so I think it'll make you feel better too."

No matter what they bring, you won't eat. No matter how much they tell you you need food, no matter how much you know you need food, you can't eat -- because it hurts. In fact, the pushing of food on you just makes you feel worse, more nauseated, more like a failure for failing to get your body one of its basic needs -- food.

Sometimes you can get over the stomach bug on your own, sometimes you need to be hospitalized and have IV fluids pumped into you. Depends how bad it is.  But one thing is certain: just eating food and pushing through won't fix it. It makes it worse.

Depression / anxiety are like that. You know you need to be happy, or calm, or put together, or what not. But happy thoughts don't get you there. It's not a matter of you being upset at something or depressed about something. It's not rational. It's not something you can work through if you just try hard enough. Yoga -- like a few tablespoons of broth -- might help, but it won't fix it.  Because when it comes down to it, you're fighting an illness.

I had every reason to be anxious for five months as my son was in the NICU, but during that time I was okay. Now, when I have a child more perfect than I could have imagined, when he's beaten all the odds and is doing so well, now when there is no cause for it -- now is when I cannot keep my pulse in check. Palpitations, higher blood pressure and yes, even anxiety attacks have crept back in. (Anxiety attacks present like heart attacks. I don't recommend them.) I have every confidence that God is carrying us through. I'm not really worried about the big things in life. That's right, I'm not worried. And yet that doesn't stop the anxiety. Because that's not what anxiety is.  Anxiety is not just being worried. Depression is not just feeling sad.

In this season of seasonal effective disorder, those of us who fight this sort of illness fight harder.

I've been blessed with a man who has never had a mental illness but somehow still understands my mental lapses. He lets me run into the bedroom and curl up into a ball. He gives me time away from the kids to run and swim to release endorphins. He takes time off work so I can seek a doctor's help when I cannot manage things alone. But -- and this is key -- he never makes me feel like what I am battling is anything more or less worse than a stomach bug. I have an illness, it needs treatment. I am not the illness I fight, and I cannot simply push through.

I am grateful today for those around me who help keep me sane. I am also grateful that winter is almost over.

Sunday, February 16, 2014

Grateful in a week that should be hard

I am full of gratitude today. The sun came out, and this weekend has been amazing.

Ten days ago we received hard news. This was not bad news at all, but it caused us to have a simultaneous moment -or rather, a week's worth of moments- of both mourning and gratitude. Seems news can be both hard and good. 

Add to this news JAM's brain MRI (results will be received tomorrow) and the departure of my husband on a business trip last Thursday -- right before Valentine's Day and my daughter's birthday -- and it's been a crazy week.

I needed to get stuff done around the house, I needed to purge my soul a bit, but I had a sick JAM at home, and I had no back-up support. On top of that JAM is fighting a cold that has guaranteed me no more than three hours of sleep in a row for three nights straight. Poor kiddo! (Single parents - you're amazing!)

Friday night a friend invited me and the kids out to Chuck-E-Cheese. "I heard you're single for Valentine's day as well. Let's make a date out of it!"

I was about to remind her that I couldn't, that JAM was in isolation and I couldn't take him to the germ-infested restaurant, when she also said, "My girlfriend wants to come over and watch Jonathan, for free."


So I went off and enjoyed a much-needed girls-night-out with my older kids. It's rare that they get to do something out and about with me, JAM's needs often trump, so I was grateful that the way was paved for us to do this.
On Saturday I had a to-do list longer than Montana to accomplish, and much of the to-do list involved throwing out "precious" pieces of artwork and happy meal toys in the basement. I'd gotten a lot of the purging done when the girls were at school, but I needed to do more before they noticed the big trash bin in their toy room. I needed the girls out of the house. 

On the way to Chunk-E-Cheese I got a call from my daughters' friends mom. "Lise wants to know if Ella wants to come over tomorrow for a play date at 10. ... Oh, and she wants to know if Mimi can come, too."  PERFECT! Probably two hours of time to clean. Just what I needed.

I dropped them off Saturday morning and asked when I should pick them up. "Oh, mid afternoon" Lise's mom replied.

MID afternoon?  MORE than two hours of JAM / cleaning time?!?

After lunch, sick JAM went down for a long nap and I got the entire playroom purged. Mission accomplished. After he woke up, I called to see if the girls were ready to be picked up (or, more honestly, Lise's parents were ready for the girls to be picked up).

"How about another hour?" Lise's mom cheerfully said into the phone.


So I found a sunbeam, and I sat in it. This isn't metaphorical, it's actual. It's been months and months since we had sun, but there it was, pushing its way through the cold of Michigan and onto my favorite armchair. Jonathan wanted to cuddle, so I made him sit in the warm sunbeam with me. We snuggled for half an hour before he decided playing on the floor would be more fun.

That sunbeam, that half an hour of peace and calm -- THAT made all the difference.

When JAM and I picked up the girls, Lise's mom invited me in for a glass of wine, and I got the company I very much needed. We spent a good hour discussing life before Jonathan's stomach told us it was time to go.
Sunday also brought rest. This morning, just as JAM went down for a nap, a good friend picked the girls up for church, and I sat on the couch (the sun has again gone into hibernation), threw a blanket over my legs, and sipped on coffee. 


By all accounts this should be one of the most stressful weeks I've had in months. I expected the unexpected blessings to end a long time ago, but they keep being showered on us. When we really need it, friends come through. When things get difficult, time in prayer has assured us that we're on the right path. We have peace where we should have anxiety and sorrow. It seems that sometimes in the dead of winter, the sun shines on us a bit. We are blessed. 

Thank you friends, for somehow knowing what we need, even before we ask.

Wednesday, February 12, 2014

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

Image from, 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.

Thursday, February 6, 2014

A thanks to blood donors & better than a baby shower

A year ago my church hosted a blood drive for my son. In many ways, it was better than the traditional church shower. (Let's be honest - as a third child, he wasn't getting a church shower anyway.)

The blood drive was the idea of another preemie mom. Her teenage twins had been in the NICU, and every time I talked to her or her husband about Jonathan's stay, it took them back to early life with their twins. Perhaps I shouldn't have been surprised when she asked if she could host a drive in his honor, but I was. It was so perfect, I wouldn't have thought of it, and it was just the sort of gift I needed as his mom. I cried. For real.

See, despite all the prayers and well-wishes and support (and we had a ton) the truth is, I felt a bit alone after we'd brought him home. It didn't help that now we were in isolation and I didn't see people as much, but it was more than that. While every day of his life was a celebration in our community, it also felt like he'd never been fully celebrated. That doesn't make sense, I know, but there was no huge excited exclamation of "the baby is HERE!" We never had that sort of celebration. He came in to this world slowly, bit by bit, organ by fragile organ, on wings and prayers the whole way. Things had been so touch-and-go that no one knew when or how to celebrate. Gifts in the hospital (the normal spot for such celebration) seemed out of place. And then after that it was too late to make any sense. Once he came home I really wanted to host a party to scream "We've MADE IT! We have an amazing baby boy!" But we couldn't host a party because, well, he was home and fragile and we were in cold and flu season. Someone had put an "It's a BOY!" balloon on our mailbox the day he came home. I'm not sure who it was, but that too touched me. It's a boy. We can celebrate now.

In the end, I can't think of a better way to celebrate his life than to help make life possible for other preemies. This mom knew that.  She knew as most NICU parents know, that blood is necessary to sustain these little ones.

The drive gave me an excuse to finish up his baby scrapbook, so it could be displayed at the recovery table. When I went to give blood, I was surprised that the blood drive personnel weren't very interested in hearing about the baby behind the drive. I was introduced to them as the mom of the baby, but still, only nods, no questions.

Turns out that most hosted drives that they had worked were hosted in honor of those who had passed. There was a little shock when I told them how well he was doing at home. "He's still alive?"

I think we need more drives in honor of those who have survived, and with gratitude to those who made it possible.  And we need to send out more thanks.

So, here:

Next week Tuesday I'm taking my lunch break to save a life. I now have a name and face to go with that donation, and that keeps me giving, as long as I am able.  Thank you donors!

P.S. I just heard this morning that Michigan Blood published a story about JAM and me. Read it here. I hope it inspires others to give.

Wednesday, February 5, 2014

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.)


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.

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.

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").

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).
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

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

Have a fantastic February!  Make the best of it.

Sunday, February 2, 2014

Remembering the day he nursed.

Q: When was your micro-preemie able to nurse?
A: At six months old (two months adjusted age). Exactly a year ago today. Once.

I remember being hooked up to the breast pump in the NICU and at home many times a day. I added up the time once, and between pumping, storing, thawing, feeding, and cleaning pumping supplies (we don't have a dishwasher) I spent between 8 and 12 hours a day feeding my son. Thankfully I didn't do it alone, as Steve helped with cleaning and feeding parts of the job. Ella believed she could help with feeding, too, but the closest she ever got was us letting her hold the bolus once or twice when a feeding was gavaged (put through his feeding tube with gravity taking it to his stomach).

I remember my NICU nurse being surprised when I was still exclusively pumping food for JAM at four months. Jonathan had only ever had my milk, often with fortifier added for extra calories. "Not many stick with it that long" she said.  I didn't know it then, but I'd be sticking with it for another year.

It had been easier going for me than for many NICU parents. I had been in preterm labor twice in the three weeks before his delivery, and my body was ready for him. It was difficult to sit up and pump after a c-section, but it had come with rewards. After five minutes, I had a few drops of liquid gold - colostrum for my son. Within two days my milk had come in. I was fortunate.

I told the nurse that I was investing so that things would be easier later on. If I could keep producing milk, eventually I'd be able to be bottle and apparatus free -- with just me and Jonathan all that was required for a meal. That's how it had been for my girls. I would grab a few diapers and wipes, and we could go out on the town together. No worrying about if I had enough food on hand, I always had food.

And so that's how it was going to be with my micro-preemie, I was sure. Eventually he'd learn to eat by mouth, and when that day came, I wanted to be ready. Nursing my kids was always a special bonding moment, and I'd missed so many other moments with JAM, this is one I was going to work for.

In the NICU we tried with nipple shields - thin plastic that helps keep the suction in place so that babies with a weak suck can still get food - and Jonathan was able to get a little milk. Most of the time he only got two to three mls of food, but once he got over 10 mls. We were delighted.

When we came home they told us he wouldn't be on a feeding tube long, that he had a strong suck and just needed to learn how to take a bottle.

We worked with him every day to get that feeding tube out. I had too fast of a flow for him, so unless he was doing very well with his breathing, we stuck to bottles most days.

A year ago Steve was slow in warming the bottle and Jonathan was very hungry. So I gave my baby another shot at nursing.  By the time Steve came in with the bottle, Jonathan had the hang of things, and so Steve took the bottle back with him and Jonathan kept nursing. It was beautiful. I found myself holding my breath in awe. He was really doing it.

About twenty minutes later Jonathan was in a milk coma. He had fallen sound asleep, warm and relaxed in my arms. It's a different sleep from other sorts of baby sleep. If you've seen this in a newborn, you know what I am talking about. His mouth still moved as if he were nursing in his dreams, but the rest of his body was heavy and relaxed. He was full, satisfied and safe.  My heart was full, too, completely in love with this little boy who had finally done what I'd dreamed for six months he might do. I was so glad I'd not stopped pumping. I was sure this moment was a sign of all the good things that were around the corner.


It wasn't.

That was the only time he nursed for a full meal. After that he became too tachypnic (fast breathing) to eat even by bottle. We found ourselves only able to feed him by mouth once or twice a day on good days.

Within a few months we were meeting with a surgeon to talk about placing a more permanent feeding tube. When we finally got steroids on board for his lungs, he started breathing better again, but it would be another four to five months before he master a bottle. He never wanted to nurse again.


By the time I figured out that things wouldn't be the way I'd dreamed, I'd gotten used to our new routine. I continued to pump until just a few months ago, when I lost five pounds in a week and my body decided I was done feeding the baby. He was over a year adjusted, or over sixteen months old.

Thus for over a year, close to a year and a half, JAM got antibodies from my milk. I gained a new respect for pumping mothers.

And through this I gained several more
Lessons Learned through a Micro-Preemie:
(You know, the name of this blog?)

1. Things will not always go as planned.
2. A micro-preemie's timing is his own, and setting schedules is silly.
3. Having your eye on the future is good, but hold on to those dreams loosely. Things change in unexpected ways, and once you've adjusted, you may find it's not so bad after all.

I also gained a deep freezer full of milk. See?

Don't be jealous - JAM was "NPO" too much of the
first four months of life - also not what we wanted.