More gratitude - The sun has come out again

Checking out the toys

Y'all know that J is small and developmentally delayed. And y'all know that some of that is from his prematurity, and some is from the long undiagnosed renal tubular acidosis.

Saying he's "developmentally delayed" is harder than admitting he's small. I want to strike it out with all the "BUT"s of his life. "BUT he's trying so hard, BUT he's almost up to 50 words. BUT you wouldn't know it looking at him. BUT he's not THAT behind, BUT it's from the lethargy of undiagnosed RTA." But no BUT will remove the delays from his chart, not yet.

We had an appointment with the developmental pediatrician today to check up on these issues and get an overall sense of progress.

Winter gray lifted and the sun showed through scattered white clouds the full there and home again. I knew the sun would come back again, eventually.

As he played in the waiting room, another girl, just his height, came and joined us. He viewed her with cautious curiosity, and she saw him as an instant friend. They played side-by-side for a while, and then she jumped up on a table that was just above waist height for her. He regarded this with some surprise.

"Learning bad habits, are you, buddy?" I said to J.

"Oh, get down from there! You're teaching him bad habits!" the other mom echoed to her daughter.

"It's okay," I said, "He doesn't have the strength to do that. And, honestly, if he did, I'd be thrilled."

Because the two looked like twins in height and build, the next question was inevitable.

"How old is he?"

"Oh, certainly older than she is." I said, "He's a tiny guy."

She nodded at my redirection and turned to her daughter. But, looking at them side by side, exactly the same height and playing so similarly, curiosity got the best of me, too.

"So, how old is she?" I asked.

"Almost two," her mom beamed.

"Ah!" I said, and then, because it would be rude not to share, "He'll be three in July."

"Wow, he IS itty-bitty!" she replied.

But do you know what? The comment didn't sting. Through that entire interaction, watching him with an almost-two-year-old who was clearly stronger than him but not THAT different, I couldn't help but smile with gratitude. "She's an almost-two-year-old." I thought, "That means he looks like an almost-two-year-old and he acts like an almost-two-year-old. He might look like a two year old before he turns three!" I thought, "And he's getting so strong,"

Our conversation stopped there as the nurse called us in. Jonathan heard her call and walked HIMSELF out of the waiting room (a first), head held high with the confidence of a toddler who knows where he was going. I followed him, still smiling, thinking of the little girl.

In the doctor's office, he paraded himself around the room with glee. I marveled that his rib cage was no longer visible. Four months ago I had to keep him strapped in the stroller to keep his hands off the dirty floor. This time around he never once tried to crawl. He was terribly helpful with his physical, showing the developmental pediatrician how to use the alligator hammer to check his reflexes, and reminding her that a fun looking twirly wire connected the fundoscope to the wall. What a difference from the lethargic stares of last spring. So grateful.

He weighs nearly 9.5 kilos (20.75 lbs) and is 31.25 inches. He's still off (below) all the charts for height and weight by age, and he's sitting right around the 5% weight-for-height ratio, but that's really good compared to a year ago, on all accounts. Our weight goal is 10 kg by April -- a goal that seemed impossible when we set it last fall, but he is getting there. Ah, gratitude.

The developmental pediatrician commented on his muscle tone. "I have written here from our last visit 'low muscle tone in ankle,'" she said, "but he's not any more." She gushed. I'm overjoyed.

The endocrinologist doesn't think J has any hormone related ailments. The GI doctor thinks he looks great and confirmed that NEC was likely the cause of his zinc deficiency, which is an answer to that question. Both specialists have one more follow up appointment (one four months out, one a year out), but in both cases, I think that just may be the last we see of their offices.

We've seen huge gains with the in-home physical and occupational therapists over the last two months (it's hard to believe it's only been that long) and so at today's appointment we arranged for him to switch to inpatient therapy after he's out of isolation. I was reminded that April was just around the corner.

I could climb this -- if I wanted to.

The drive to inpatient therapy is not short, and it'll mean weekly appointments in the Big City, but this boy is taking off -- and it seems for the first time in a long time that "catching up" might just be a thing for him. It will be a while yet, but we are so grateful.

These amazing developments (well, other than the emergence of the sun) brought to you in part by nephrologists, fixers of the kidneys, and by bicitra, the medicine that is correcting J's renal tubular acidosis. This month is national kidney month. We remember you this month, kidneys. Thank you for keeping us alive, giving us energy, and helping us pee -- all year round.

The Vision of Trees - ROP

This post first appeared in Catapult Magazine and is a raw look at how I processed JAM's potential blindness when he was diagnosed with one of the worst versions of retinopathy of prematurity, "AP-ROP" or "Rush Disease," and I found myself coming to terms with the knowledge that, even with laser eye surgery, he would never have normal vision and may never see more than shadows. 

 

Emerald, orange and yellow flashed at crisp sunlight, shading my windshield of dead bugs. I arched my neck to look past the filth. Leaves had never been those colors before. I thought I knew what color was, but this display was different. Never in the history of the world have trees given such delicious colors. On this day the trees had decided to become deeper, more majestic, merged together to make the most beautiful bouquet, each at perfect peak.

 

Our crabapple tree, just days before his birth.

I knew why they’d done this. It was for me, in celebration and in mourning. They’d heard his news. He’d make it to his first birthday. That was almost certain. The worst was behind us. But his eyes may never take in an autumnal feast. They had called it one of the worst forms of retinopathy of prematurity. Fast progressing.  They showed me the pictures, thick veins twisting to and fro, pulling at the thin retinas, stuck beneath a protein cloud that prevented veins from growing into the sunlight. He may soon be blind.

 

So the trees chose that day, as I drove home from the hospital with this news, to give me their fruits — a gift and a sacrifice.

The wind blew hard in the weeks that came. I didn’t mind at first. It took away the stifling summer, with its long days and no answers. It threw aside the canopy of leaves, the curtain that hid the true frame of things, giving cool clarity.

 

The trees showed off their shape. Some grew straight and strong. Their roots were secure. Nearly each branch would gain another set of leaves to join in next year’s autumnal feast.

 

It was the crab apples that darkened my vision. They would pull at my eyes as I drove so that I could not look away. Gnarly, thick, with roots that yanked at the retina of the ground like the vessels in my son’s eyes, unable to reach further into the sky.  The branches on the bottom had died off, shaded by the new growth that would not grow high enough, would not let enough sunlight through.

 

I wanted his eyes to be maples, tall and thin, stable and continually reaching for the edge of their world. Maples could see. Apples were full of retinopathy of prematurity, and that made it impossible to stretch high enough.

 

Everywhere vessels called branches flashed to my retina images of his eyes. I wanted the canopy of colors back again. Why hadn’t I minded on the day when the leaf curtain left the sky? I wanted it back, to shield and clothe the tree frames, to help me forget blindness, darkness, to help me see light again. A tree is a tree, always. I tried to convince myself it didn’t matter its frame. Please, give me back light and color and beauty. Show me your leaves, not gnarly death. Leaves give hope.

 

I parked my car.  Time for footsteps, for movement forward even if this is not the road I’d have chosen. Push on, feet heavy, anticipating a long, dark winter. At that moment of cold reality, and without warning, the leaves beneath me gave way. With their final cry, they gave a gift.

 

Crunch.

 

Crunch — kick — crunch.

 

Sunlight hit my forehead, warming my face. Dark winter was not yet here.

 

I looked down again, with purpose, looking for the crunchiest leaves.

 

Crunch, crunch, crunch.

 

The oak trees might be brown and ugly, but they won every crunching competition. The feeling under my feet was satisfying, the heels on my shoes were best for crunching. I liked the small almond apple leaves for the kick, the way they gathered close and exploded into the air.

 

The texture of the world took shape. And the texture of the world was good.

 

The gift came from both the short and tall in the woods and on garden paths. The gift required no light, no color, yet it was still beautiful.

 

Without light, there is still beauty. In beauty, there is vision. My vision was made new.

 

I saw a child, healthy and four, crunching oak leaves in his fists, laughing and throwing them into the unreachable and unseeable sky, basking in warm sunlight, unaware that his eyes were like the crab apple tree that threw speckles of cool on his forehead.

 

He was going to live. And life would be good. I would make it so. I would pass to him the gifts of the trees.

 

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.)

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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.)
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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").

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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.

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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.

What I want my Early Childhood teacher to know about my preemie toddler...

I was asked to talk to a class of undergraduates today.  All of them are aspiring to be early childhood educators. The class works through the development of a child, starting with prenatal and going into baby and up to age eight. Today was the childbirth class. I was asked to come and give a unique perspective to childbirth - what is it like to have a micropreemie? What is it like to throw your birth plan COMPLETELY out the window?

The talk went great, and after talking about early labor, a traumatic childbirth, the choice we'd had to make, and summarizing a five month NICU stay in under ten minutes, I was grateful to have a chance to go into application -- what does having a micropreemie mean for them in early childhood?  What did they miss out on in their third trimester and how does that impact them? What should the teachers of former preemies know? (Are they ever "former" preemies?  That's a question I didn't ask, but I keep wondering.)

As part of my background research for tonight's talk, I asked a bunch of NICU parents for their insights. I'm posting their responses anonymously here. There's a chance that some of the students I talked to tonight will check out this blog. Hopefully this will add to what I said.

I broke the take-away message from the talk into three themes. Here's a brief overview of those themes with quotes from parents to support my thoughts.

1. Health is still an issue for toddler and grade school kids who were preemies. (My hubby was a preemie and as a 30 year old he STILL has lung issues that are severe enough we can't have animals or many carpets in our house.) We are germ-conscious for a reason. Learn about RSV and know that your cold can hospitalize our child.  Help protect these kids with proper hygiene.  Hand sanitizer, hand washing, and cleaning of toys, etc. is essential for us, for a reason.  (I was a little shocked that no one in the room knew what RSV was. Then I realized that I hadn't before I'd had a preemie either.)

Here's what other parents said when I asked what they wanted these students to know:

• "I wish they'd get their flu shots, and send sick kids home."
• "We are not just paranoid about germs. We are trying to save our child from a hospital stay."
• "Sickness in other kids maybe mild and just a "runny nose" but that runny nose may end up hospitalizing my child. Please keep that in mind when I am ranting and raving about idiots that send their kids to school sick. And, remember that when the next week my child misses all 5 days of school and comes back with neb meds and on a steroid high."
• "Sickness happens often.... their lungs are not that of most kids their age. Missing school is going to happen. Its not that I'm lazy, or don't want them there, but they sometimes need extra time to heal!"

2. Keep lines of communication open and get to know OUR child. We are good advocates for our kids. We learned to be when they were only days old, and have had many many months of practice with specialists ever since. We know a lot about them and learned a lot about the medical and developmental world through them. Talk to us a lot.  Tell us what your concerns are, but more importantly also hear what we know. DON'T try to think you know our child because you once knew a different preemie.  The paths these kids take are very varied.

See?:

• "I think the most important thing to stress is communication! Teachers need to know that there is nothing a parent welcomes more than feedback on their child. I once had a teacher afraid to speak to me about their concerns over my sons reading level, for fear that I might be disappointed. Little did that teacher know that I had spent the entire year previously fighting with my child's teacher trying to get him to recognize the issues I was seeing. The best thing a teacher can do is start an open dialogue early."
• "I recommend that teachers do not tell parents about preemies they've met who have had no lingering problems. Outcomes vary so much that the title 'preemie' is just the beginning of the story... Children who struggle early on may be able to push through only to struggle again, repeatedly, when they are older. My own research led me to keep my 23-wk twins in Kindergarten for an extra year, despite my children's preschool teachers stating they were doing just fine. Educators can help parents be aware of this option and help remove the stigma of holding children back."
• "I'm an intervention specialist myself. What educators need to know is they don't know. They might have all the education in the world but no one can possibly understand what we have been through but us."
• "LISTEN! Preemie moms watch their babies like hawks. We know when their heart rate and o2 aren't right, which milestones they are struggling with, when something is wrong because we know the dangers of prematurity and look for the signs and symptoms that anything is wrong. If a parent comes to you and says something isn't right with my child LISTEN! We are seeing something you're not. Being "delayed but not delayed enough for intervention" IS NOT ACCEPTABLE for a preemie! They have been delayed since birth....intervene immediately if a parent has concerns."

3. Development and sensory issues. I talked about adjusted versus actual age. I talked about how the "adjusted" age sometimes (often) lasts past age two, even if we're not officially adjusting any more.  Also, our kids may not see the world the way you think they should. My son may be hyposensitive, others are hypersensitive. Reflexes aren't as you think they should be. Get to know how they work, be sensitive to the fact that they may process things differently.  Like any good teacher does with ANY child (and like I already said with #2) get to know each child well.

• "Our kids don't take the straight line with development, usually they are all over the place. Sometimes ahead in some areas and behind in others. That many have sensory issues that can mirror other problems, but they aren't. They may need more quiet, more time,and more help than some others. They didn't get the quiet of the womb, they didn't get the pressure on their joints in the womb, so this and many other things can impact learning and attention." 
• "I would like my educators to know that micropreemies are at high risk for learning disabilities, social issues, sensory.....and early intervention practices should not stop when children reach school age level. My daughter, a 23 weeker has to work extra hard just to be average. She is in a great school but I still struggle to get her the services she needs!"
• "The focus with all kids needs to go back to social/emotional instead of just ABC's/123's, especially with preemies. My 23 weeker is actually really smart, but socially still struggles. She is now 9 1/2 and I think that if she had better experiences in child care, we might have overcome some of our sensory and social challenges. We had lots of negative judgement from teachers and directors."
• "I love my 22 weekers preschool teacher..However,I do wish I could help her understand Processing Integration Disorder better. Sometimes she can get overwhelmed and nobody gets it."
• "LOVE LOVED LOVE our preschool teachers but I wish they were more sensitive to his sensory issues. they often let him get overwhelmed to the point of shut down and all it would take is to take him out of class for a few minutes to let him chill quietly to avoid his shut down."
• "I'm an Early Childhood Educator and a mom to two preemies. I think the most important thing for all teachers to remember is that no two children develop at the same rate. We are expected to have all students reach the same point at the same time and that isn't real life, especially with children who are already developmentally behind their classmates due to prematurity."
• "Sometimes their prematurity can still be a impact even after they quit adjusting for it."

And then there's other things that I touched on but didn't highlight.

4. Size/weight. Two notes: One, many preemies are very small. They had to work hard that third trimester, they couldn't focus on growing like their in-utero peers.  Two, size does NOT equal strength. Just because a preemie ISN'T small any more and looks more like their peers doesn't mean they're healthy. Their lungs still may suffer and they may still have other preemie issues.  Being a preemie is about a lot more than just being small.

• "One thing, her father and I get annoyed with is people's insensitivity in regards to her size, we are constantly being told how tiny she is. We have even been told that we are lying about her age, so please stress the importance of not remarking on size and scars."
• "Even though she might look 'typical' she is not typical and her lungs will still slow her down."

Basic understanding of prematurity is important. I never got in to quarantine tonight. I didn't talk about why he wasn't in daycare like we thought he'd be, and why I hired nannies for in-home care for the first year of his life. I never got a chance to say how lucky my son was because he didn't  have a trach or oxygen, and that they shouldn't think of him as a normal case. Truth is, there IS no "normal case." There is so much else out there to learn.

I told them that the things most babies get naturally Jonathan had to learn through hours and hours of PT and OT. I told them about his airplane arms and how that had hindered him from exploring the world around him. I didn't tell them about how I put him in a sandbox early so that he'd learn to tolerate the feeling of sand -- because otherwise he may never ever be able to stand it. (See the last two pictures in this post for him in sand and him with arms out wide.) I didn't tell them that it took him eleven months to be able to take all his nutrition by mouth without a feeding tube -- and that we think that's a HUGE success.

I didn't tell them so much.

But these students, when they are teachers, they will learn like I learned. They will find themselves working with a kid who doesn't fit their mold, and they will learn to expand their horizons.