nervous

We make them nervous.

We come with sick kids - sicker than most on a daily basis, but sometimes just sick like any other kid.

("He isn't on oxygen normally, so he can't go home on oxygen, even if you have it at home, because we don't send kids home on oxygen."

We come with our gear, all beeping and whooshing and flashing lights, this bag and that - literally holding our childrens' lives in our hands.

("Wow....you have a lot of equipment here.")

We come with knowledge - we know their words, their secret codes. We can understand the big words they often use to show how smart they are, how much more they know than the patients they're caring for....and they are afraid they're not that smart.

("she's on a ventilator, and I'm guessing mom knows way more about this than we do")

We come with familiarity. We do things every day that most of them do once in a great while. That familiarity gives us confidence, and their confidences on these things is not that great.

("Oh my God, he has a trach! I hope you don't expect us to do anything with that!")

We make them nervous - we are not doctors or nurses, but we know this stuff better than anyone. We can change a trach in our sleep, silence a vent in the dark, set up and run a nebulizer before they'd even find all the parts. And they're never quite sure what their job is at that point.

*****

Those quotes are all real quotes that we've heard over the years. Many have been brought to mind, because Acorn has been in the hospital with RSV and suspected pneumonia for the last 5 days and is finally home; Leaf has been in the hospital for the last 2 days "just in case." We've argued with doctors about whether or not Acorn can go home on oxygen (*his* pediatrician sent us home that way today, which was good because Acorn was bouncing off the walls, with instructions to come see them Monday, hopefully without oxygen). Everyone agrees that we *could* manage Leaf at home, but they want to get past the risk of things getting worse.

Hospitals are supposed to be the place you go when you need skilled medical help. For families like ours, they're scary - you don't know which person you talk to will have enough knowledge, and whether or not they're willing to admit it if they don't know. You have people second guessing every last thing you have spent months working out, from ventilator settings to feeding choices to how to get a child to sleep.

But they can also be good places - where the first words out of the mouth of a nurse or respiratory therapist who's known your child a long time is not "Oh my god!" or "I can't do that" but rather, "He's so big!" or "she's still got that smile!" They know how far you've come, and they start there. Those people make our stays a little brighter.

That silly trip to Holland

I have to say, 4 years into this special needs parenting thing, that I'm still surprised by how many people like that "Trip to Holland" piece. If you're not familiar with it, go read it now and come back, because the rest of what I'm about to say will make far more sense.  I'll wait.


Got it? Good. Now then....back to Holland

This piece comes up every few months on some special needs board or another, usually posted with a comment along the lines of "Have you read this? It's great!"

First, I don't think it's all that well written. It's smarmy and sentimental.

Secondly, I think it's a terrible metaphor. Some people might want to go to Holland, and if you ended up there and hated it, you could just hop the train and go to Italy anyway - it's only about 1000 miles from Amsterdam to Rome. It's not like this is a case where you look around and think:



Finally, she mentions that it's not some horrible disgusting place with famine and disease. Maybe for her it wasn't...but that's not true for all of us.

We've spent more than 1/3 of our days as parents with one or more children in the hospital. Have you looked around a hospital lately? There's a reason we don't let our kids play on the floors. There's a reason you're more likely to get life threatening illnesses in hospitals than at home (in 90 days in the PICU, on contact precautions, Leaf had a infection in her blood, 3 rounds of bacterial airway infections, and C.Diff...thus far, she's had *ZERO* infections in almost 5 months at home).

And don't get me started on how to feed a child who won't eat. Feast or famine, doesn't matter if your kid has oral aversions.

*****

What would be a more apt metaphor?

I'm thinking it's more like carrying a heavy backpack all the time (around here, with ventilators and oxygen, that's sometimes more truth than metaphor). In a lot of ways, it's like everyone else's life, except when you realize you don't fit at a booth in most restaurants, and it's a lot more work, and everything is complicated by having to figure out what you're going to do with this backpack while you're living your life.

But sooner or later...you kind of get used to the backpack and the challenges that go with it.

We're a Lot Like You

Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.

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It's kind of funny, but the topic left me struggling for a bit - after all, special needs parenting is a pretty big theme here. But it's a pretty broad subject, all things considered, and I wondered what would really be of interest to the carnival readers - after all, while we strive for following natural and attachment parenting ideals, we make a lot of trade-offs, and I often feel like the things that my children need make us outcasts amongst our more naturally minded friends.

And so I thought that maybe that's the thing I ought to write about. One of the primary tenants of Natrual Parenting is that while you keep the ideals in mind, you also strive for balance and for doing what works best for your family. No two families are alike, so Natural Parenting often looks a little different from family to family, and ours is no different.

We feed with love and respect...even if it is a tube feeding, even when the only thing a child has eaten in days is cheerios and prescription formula.

I pumped breastmilk...for as long as it seemed a viable option for both Acorn and Leaf, as long as it wasn't getting in the way of actually doing the things they needed.

We have very attached kids...who happen to be attached not just to us, but to several of their nurses as well.

We reasearch our medical options and choose carefully...we give elderberry syrup for viral illnesses along with albuterol; we see a chiropractor and numerous regular doctors too.

We babywear....just not all the time, because it's hard to babywear while carrying 75 pounds of ventilator and oxygen.

We use cloth diapers...much to the horror of some of our medical staff. We've used washable cloth options for other disposable things too, like in place of gauze under g-tubes and trachs.

We recycle....including the plastic syringes and feeding pump bags and the cardboard that everything seems to arrive packed in.

When the weather's nice, we get outside...even if that means hauling the ventilator and oxygen to the park.

We discipline gently...even when the other parents we know whose children have similar medical issues think we must be crazy to not spank, yell, or do time out.

Every day here is one of learning...even if some days the extent of the learning is 4 hours of therapist appointments, and even if our idea of milestones isn't quite the same as everyone else's.

And we may be among the very few families who've had doctors advise not to let our children cry it out, which we just smiled about and said, "oh, that's probably a good idea."

Really, we're a lot like most other families. We just come with a lot more equipment and doctors than even a mainstream family. But it doesn't make us bad Natural parents....just a little extra special.

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Visit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!

Please take time to read the submissions by the other carnival participants:

(This list will be live and updated by afternoon March 13 with all the carnival links.)

• Parenting A Child With Neutropenia — Jennifer at Hybrid Rasta Mama discusses the challenge of parenting a young child who cannot produce enough neutrophils to fight off bacterial infections.
• How I Love My High Need Baby — Shannon at GrowingSlower was shocked to find she is parenting a high-needs baby, but she's surviving thanks to attachment parenting.
• We're a Lot Like You — kaidera at Our Little Acorn talks about how her family is similar to others, even with all their special needs
• The Emotional Components of Bonding with Preemies — Having a premature baby can bring on many unexpected emotions for parents, but working through those emotions can bring about a wonderful bonding experience. Adrienne at Natural Parents Network shares.
• Raising a babe with IUGR: from birth through the toddler years — Rachel at Lautaret Bohemiet shares the story of how her son’s post-birth IUGR diagnosis affected his first days of life and gave her an unexpected tutorial in advocating for their rights as a family.
• When a grandparent has a disability — Shannon at Pineapples & Artichokes shares how she has approached explaining her mother's disability to her young child.
• Taking The Time To Really See Our Children — Sam at Love Parenting writes about her experiences working with children with various disabilities and how it has affected her parenting style.
• Natural Parenting In An Unnatural Environment — Julie at What I Would Tell You gives us a glimpse into how she improvised to be a natural parent against all odds.
• Getting Through the NICU — Laura at Authentic Parenting gives a few pointers on how to deal with your newborn's stay in the NICU.
• Living With Sensory Processing Disorder — Christy at Adventures in Mommyhood talks about the challenges that can come from living with a child who has SPD.
• Our rules for NICU - March Carnival — Hannabert's Mom shares her family's rules for family and friends of a NICU baby.
• Letter from Mineral's Service Dog — Erika at Cinco de Mommy imagines the letter that accompanies her special needs son's Service Dog.
• Blessings in Unexpected Places — That Mama Gretchen welcomes an inspiring guest post from a dear friend who shares about the blessings that come from a child with Down syndrome.
• Tube Feeding with a Blenderized Diet of Whole Foods — Erica at ChildOrganics shares her experiences with using real food when feeding her daughter who was unable to feed herself and needed a feeding tube.
• Abbey and Evan — Amyables at Toddler In Tow writes about watching her preschooler play with her friend who is autistic and deaf, and wonders how she can explain his special needs better.
• How to Minimise the Chance of a {Genetically Prone} Child Being Diagnosed with ADHD — Christine at African Babies Don’t Cry shares her tips on keeping a child who is genetically prone to ADHD from suffering the effects.
• Tough Decisions: Parenting With Special Needs — Brenna at Almost All The Truth shares what has been keeping her up at night worrying, while spending her days discovering just what her options are for her precocious child.
• Life with my son — For Dr. Sarah at Good Enough Mum, life with an autistic child is just another variation on the parenting experience.
• Dear Special Needs Mama — Sylvia at MaMammalia writes a letter of encouragement to herself and other mamas of special needs children.
• His Voice — Laura at WaldenMommy relives the day her son said his first sentence.
• What is 'wrong' with you' The challenge of raising a spirited child — Tara at MUMmedia discusses the challenges of raising a child who is 'more' intense, stubborn, and strong willed than your average child.
• Tips for Parenting a Child With Special Medical Needs — Jorje of Momma Jorje shares her shortlist of tips she's learned in parenting a newborn with special medical needs in a guest post at Becoming Crunchy.
• Parenting the Perfectionist Child — Mandy at Living Peacefully with Children discusses that as parents of gifted children, we are in the unique position to help them develop the positive aspects of their perfectionism.
• Montessori-Inspired Special Needs Support — Deb Chitwood at Living Montessori Now gives a list of websites and blogs with Montessori-inspired special-needs information and activities.
• Accommodating Others' Food Allergies — Ever wonder how to handle another family's food allergies or whether you should just skip the play date altogether? At Code Name: Mama, Dionna's friend Kellie (whose family has a host of allergies) shares how grateful she is when friends welcome them, as well as a list of easy snacks you can consider.
• Only make promises you can keep — Growing up the child of a parent with a chronic illness left a lasting impact on Laura of A Pug in the Kitchen and what she is willing to promise for the future.
• A Mom and Her Son — Jen at Our Muddy Boots was fortunate to work with a wonderful family for several summers, seeing the mother of this autistic son be his advocate, but not in the ways she thought.
• Guest Post from Maya at Musings of A Marfan Mom — Zoie at TouchstoneZ is honored to share a guest post from Maya, who writes about effective tools she has found as a parent of two very special boys.
• You Don't Have to Be a Rock — Rachael at The Variegated Life finds steadiness in allowing herself to cry.
• When Special Needs Looks "Normal" — Amy at Anktangle writes about her experience with mothering a son who has Sensory Processing Disorder. She offers some tips (for strangers, friends, and loved ones) on how to best support a family dealing with this particular neurological challenge.
• Special Needs: Limitation or Liberation? — Melissa of White Noise describes the beauty in children with special needs.
• How I Learned It'll Be Okay — Ashley at Domestic Chaos reflects on what she learned while nannying for a boy with verbal delays.
• Attachment Parenting and Depression — Shannon at The Artful Mama discusses how attachment parenting has helped her get a clearer image of herself as a parent and of her depression.
• On invisible special needs & compassion — Lauren at Hobo Mama points out that even if we can't see a special need, it doesn't mean it's not there.
• Thoughts on Parenting Twins — Kristin at Intrepid Murmurings shares her approach to parenting twins.
• ABCs of Breastfeeding in the NICU — Jona at Breastfeeding Twins offers tips for establishing breastfeeding in the alphabet soup of the NICU.
• Life With Michael - A Mother's Experience of Life With Aspergers Disorder — At Diary of a First Child, Luschka's sister-in-law Nicky shares her experience as mother to a child on the Autism Spectrum. It is filled with a mother's love and devotion to her child as an individual, not a label.
• Raised by a Special Needs Mom — Momma Jorje shares what it was like growing up as the daughter of a mother with a handicap.
• Becoming a Special Needs Mom — Ellen at These Broken Vases shares about becoming the mother of a child with Down syndrome
• She Said It Was "Vital" — Alicia of Lactation Narration (and My Baby Sweets) discusses the conflict she felt when trying to decide whether therapy was necessary for her daughter.

Frame of Reference

Talking with others about how people see kids like mine - kids with substantial medical issues, medically fragile kids, complicated kids - it's been clear that part of the problem is just that the rest of the world has no frame of reference at all.

Here's the reason. People think in very simple terms - 3 boxes. You're either healthy, sort of sick (fever/cough/rash, lay around on the couch a couple days), or sick enough to be in the hospital. If you're sick enough to be in the hospital, you're there a couple days, and then home to lay around on the couch for a few days, and then you're healthy. That's how modern medicine works.

Kids like mine...well, let's talk about Leaf, because Acorn is getting closer to fitting that version of normal than he's ever been...close enough to fool people most days.
Leaf is in the hospital right now. She's been there going on 6 weeks, which is way longer than most people can wrap their heads around, much less the 5 1/2 months she was in the NICU, or the 9 1/2 months than Acorn was.

A freakin cold landed her in the hospital for 6 weeks and counting. Who goes to the hospital for a cold?

There's no going home and laying on the couch a few days in order to be normal for her after this either - we're coming home with 100 lbs of medical gear (and a car battery!) that will go wherever she goes.

No matter how happy, smiling, and normal she looks (other than the tube in her neck for breathing and the tube in her belly for eating), she's not healthy per se. She's at risk. She's likely to end up in the hospital for most illnesses. The ones she doesn't won't be a couple of days of chicken soup, they'll be the kinds of things most people go to the hospital for - oxygen (more oxygen than normal), nebulizers running round the clock, multiple meds....the only thing we can't do at home is an IV.

Even EMTs will stop and stare if we ever call 911. The best they can do is scoop us up and run to the hospital - their oxygen tank is bigger, which is about the only reason we'd call anyway. When Acorn had RSV, we called 911. The paramedic in the back with us told the hospital dispatcher that they were doing nothing for him - we'd already done more than they could think to do.

And none of that fits into one of those 3 little boxes up there.

So...schools, daycares, friends and family....all these people have a hard time knowing how to work with our kids, because they just don't get it - they can't find a way to categorize our kids if they don't fit into one of their three boxes.  So they pretend our kids fit (or shoehorn them in, like the old version of Cinderella where the sisters cut off their feet to fit in the slippers).

And that's where it fails. Our kids aren't going to fit into those boxes, and a one-size-fits-all solution isn't going to work for us.

The End of An Era

Today is our last day of nursing (though our primary nurse has offered to sit with Acorn once in a while, and we've made arrangements with her to do so once a month so we can get out of the house). When Nurse J leaves at 7 am tomorrow, we're done for good. It's rather bittersweet - yeah, I want them gone. I want my house back. But there are all these little details.... nebulizer treatments and one medication that we almost never give. Night time wakings. Child care arrangements. At home arrangements for when he's sick. Lots of little things that normal families do all the time. The list is a little overwhelming, but it should be ok. There's no trach to suction. No g-tube to come out in the middle of the night. No need to turn the pulse ox on at all, really. Thursday, Acorn starts daycare. By himself. When we did daycare earlier this year, it took a whole duffle bag to be prepared for all possibilities, plus a bag for his cloth diapers. Now we're looking at just packing him a kid-sized backpack, plus his bag of diapers. And here we thought getting rid of the ventilator meant less stuff to carry.

Maybe I'm Just Strange

Some of you probably read that title and thought, "no, really? You're only now realizing that?"

Our news this week is that we have a tentative date for Acorn's decannulation: next Tuesday.

When mentioned to a friend, she said, "oh, I bet you're just so excited!"

But I'm not.

Really, it's just another procedure - and a minor and anticlimactic one at that, since we check into the PICU, take his trach out just like any other trach change (other than not putting a new one in) and hang out there for a couple of days to be sure no problems develop.

More than that though, I think my lack of enthusiasm is because the trach isn't the enemy, and never has been.

I know a lot of families who hate that their child has a trach. It's not what they had planned, and most kids with trachs have a slew of other issues to be dealt with at the same time (and believe me, Acorn has his fair share of those other issues). You can't go swimming with a trach, you're supposed to be careful not to get things in it, you have to know how to do CPR if it comes out, you have alarms going off all the time, and you're always worried in the back of your mind, what happens if something goes wrong.

For me, it was always just the thing we were going to do for Acorn to give him a better shot at a life outside of the hospital. The best option in a sea of bad options - the only option, really.

Oh, don't get me wrong, there are challenges. The zillion doctors appointments and follow up phone calls, the personalities and realities of having nursing at home, the equipment to lug around...but to some extent, I don't really feel like these are awful. They are, again, just part of the way things are.

And maybe it helps that we have always known that it wasn't forever. I don't know. I just know that I'm not nearly as ecstatic about this as some people seem to think I should be.

Deep thoughts

I wrote a whole post on this, but it was so stream-of-consciousness complicated that I figured no one would make heads or tails of it anyway.

So, let me sum up this week's insights:

Dark Goddesses have a funny way of showing that they care. Clearly, the one I'm attached to thinks I need to work on some things. Ms Big Dark & Scary had a lot to say in a very small number of words - she's blunt like that.

People who complain about their normal kids and normal lives irritate me - at least in part because while I don't think our little corner of chaos is so bad, clearly if their lives are awful, ours must be worse by their standards, and how dare they judge my life?

how dare they judge my life - see, there we go with things I need to work on again. It's not a contest. Maybe, perspective wise, their life really is awful. They're the same sorts of people who say useless things like "God doesn't give you more than you can handle" and Ms. Scary says, "aren't you glad I think you rate higher than village idiot?"

I wonder sometimes if being open to the possibilities that magick allows makes for a chaos filled life. I still don't know what the answer is, but I know that I ought to sit down a little more often and carve out time to meditate on that and on the guidance of my Gods.

a sense of belonging

Sometimes I'm not sure where I belong.

I'm too attachment parenting (AP) oriented for most mainstream moms groups.

I work full time, which apparently means my kid doesn't need playgroups.

I'm usually too mainstream for most Pagan parenting groups (and the one group I know of locally requires moms to be stay-at-home-moms to join).

Apparently I'm not mainstream enough for the local AP families group (poly & Pagan) *and* too mainstream (I work full time and I give my kid antibiotics when he's sick).

My child's needs are too specific for most generic "special needs" parenting groups, which I frequently find are...overrun...with parents who have kids with Autism or other spectrum disorders. Don't take this the wrong way, but if your "special needs" group only ever talks about ASD, it's an ASD group, and ought to be advertised as such.

I've got a few special needs parenting groups that I'm a part of, but every once in a while the less mainstream aspects of our life get me in trouble (AP in particular).

And sometime this year, we will lose most of the things that have made Acorn special needs and medically fragile - both the trach and g-tube are going, unless things go haywire. While that will leave him with some complex medical history, and a few minor special needs....he'll no longer be classified as medically fragile.
 
How strange that we're not really going to fit in with that crowd either...

Trusting your child's caregivers

Some days, being "normal" feels harder than the crazy special needs life we lead.

Today I put Acorn and our brand new nurse (she oriented with our primary nurse last week, today was her first actual day of work) on the bus, less than an hour after she arrived.

It's the first time we've ever left a new nurse with Acorn for any length of time on their first day.

If he were a kid without medical complications, he'd've been in a daycare center. We'd've interviewed them, visited, investigated....and left him with them, probably without another thought.

It's hard to trust caregivers though, when you've got a kid like Acorn. It's been a year since the last time he quit breathing and turned blue....but if it happens, will the person with him know what to do? What if his trach comes out? His g-tube button? What if he vomits and gets it in his trach?

It's not like we have that many people we can trust with his care either - we've never left him with grandparents or anyone else in the family; they are unwilling to learn his care. We have, at this point, 3 day shift nurses and 3 night shift nurses - and this new day shift nurse is still up for discussion. We have one family friend who's watched Acorn a few times.

One of these days, the trach won't be an issue.

But leaving him at preschool? Putting him on the school bus all by himself?

I'm thinking I'll never get the hang of that.

comparisons and perspectives

We don't get out much, given that we're supposed to practice "social distancing" throughout the colder months to help avoid Acorn catching germs. He has one-on-one care here at home, so there's no need for daycare; there aren't many playgroups for toddlers of working parents, and the few for-pay classes for kids his age that are at times we can get there are just not oxygen tubing friendly.

Because of this, we've kind of lost touch with any understanding of what constitutes normal development - lost in the world of therapists and IEPs and goals. We've spent so much time worrying about how to get Acorn "caught up" (at 9 months, he could barely roll over, much less sit independently), that we forgot to keep track of what "caught up" means.

We spent several hours yesterday evening at a BBQ/potluck for a local attachment parenting group. They've always been super welcoming of us, 
even though we aren't quite as crunchy as many of them, and even though I'm not a stay at home mom. It was interesting to see Acorn around other kids about his own age - a real perspective changer.

Sure, they all talk...a lot...though not always intelligibly. That's something that he's still far behind on.  They eat a lot - some of them eat whole apples even. That's definitely not something Acorn can do. He walks only a little more tentatively than they do, but most of them have been walking almost a year, and Acorn has not yet been walking for 4 months. Several moms who remembered him from last summer (when we were just happy that he was sitting independently) were shocked and amazed - he looks so healthy, so normal... one mom pointed out that her son is a month older (actual age), and that she saw nothing in Acorn's actions that wasn't mirrored in her son.

Even our OT has said that if Acorn came into EI right now, he'd not qualify for occupational therapy (even though he avoids using one hand and has some sensory defensiveness) and probably wouldn't qualify for physical therapy either,  even though he can't jump and trips over sidewalk cracks.


So there we have it. Perspective. We still worry about the little things - after all, we've been well trained in picking them out. But we are a lot more comfortable with the idea that things are just fine as they are, and that all this therapy is working out.

growing up, and milestones

Today is the 1 year anniversary of the day Acorn got his going-home ventilator. It was one of the last steps in getting him home. At the time, we thought it was horribly noisy...and when we started weaning off the vent last fall, we thought the house was eerily quiet - what a difference a year makes.

This was us then....

And this is Acorn hamming it up for the camera last weekend:

You'd never know, other than the trach nose in this latest picture, that we'd ever had all those tubes and wires; that he couldn't even sit on his own without support in that top picture.

 This somewhat dark picture is his crib, a year ago in his room in the NICU:

This was his crib just last week:

And this is his bed this week:

Our little guy is certainly growing up quickly, you know?

A crazy week

We've had a marathon of a week, and it just keeps getting more crazy.

The washer broke (and hopefully will be fixed today because diapers are overdue for washing).

Appointments have run late.

Work has run late, and been stressful - and some of the things I've been asked to do, while done as requested, have made other people mad (not at me, but at the person directing me).

The mother of one of Acorn's nurses passed away last week, so we've been in schedule limbo, including one very long day where PaganMama was on Acorn duty from 7 am until 10:30 pm with no other assistance.

For those of you with more normal families, you're probably thinking, "I take care of my kid all day, what's your problem?" But I assure you, taking care of Acorn is physically and emotionally draining, in a way a normal kid is not.

Normal kids don't come with 50 lbs of gear attached.

Normal kids rarely have days where they have multiple appointments to sandwich in between naps, so if a nap is off by half an hour, it's no big deal....Acorn, on the other hand, only got a 40 minute nap Tuesday, because he didn't nap on time for his first nap, and it snowballed from there. He and I are both still catching up on sleep. And that sort of schedule is a weekly occurrence.



Normal kids don't require batteries or an electrical outlet to keep breathing.

Normal kids don't come with the worry that they might pull on something, set off screaming alarms, and then suffocate....and they especially don't come with that worry while strapped into their car seats.

I took Acorn to his 15 month well-baby check up, 10 miles away, by myself. Had something happened on the way, my only recourse would be to pull off the road into a parking lot or side street, get out of the front seat, and into the back seat, diagnose the problem, and fix it....hopefully before he turns too blue.

Don't get me wrong - things are better every week. He's stronger, has more reserves, needs less oxygen, does more in therapy, he's on the verge of  crawling and walking (and this from a kid who couldn't roll over in March).

We're mostly past the stage where Acorn turned blue every time he pooped, but it's not so far gone that we've stopped worrying about it.

There was a time where I would never have even thought to attempt a car trip without help - that's a sign of how much better he's gotten this summer. If something had happened, I know I probably had 4-5 minutes before things were completely out of control, rather than the 60 seconds we had when he first came home from the hospital. We don't carry the machine to check his oxygen saturation with us everywhere we go anymore.

We actually sleep on nights we don't have nursing.

And every day, I remind my Gods and Goddesses how greatful we are for this miracle baby, and how happy we are to have this smiling, happy, whip-smart kiddo to brighten our days.