November is Prematurity Awareness Month

Did you know approximately 1 in 10 babies is born too early (before 37 weeks)- just in the US?!

Did you know that being born too soon puts the child at risk for more health conditions than you can possibly count – from heart and lung issues to mental and learning disabilities to issues with learning how to walk or eat and everything in between?

Did you know there are babies who are born weighing less than two pounds?

Did you also know that if you’ve met my son, you’ve met one of these babies?

My son the day he was born. Yes he’s wrapped in Saran Wrap – it helps maintain his heat. And his eyes are covered to protect them from the light.

That’s right. My wee man was born weighing a whopping 940 grams at 26 weeks and 5 days. I learned pretty much everything I now know about preterm labor and NICUs and preemies while I was going through it. I was told I was at risk for preterm labor but no one really ever explained what this really meant.

This is an XXS Preemie diaper – it’s smaller than an expo marker but was still too big for my son.

And sure enough my wee man came early- but not for any of the reasons I was at risk. In other words we still don’t know why and many parents never do.

Depending on their child’s health many parents wait days, weeks, or even months just to hold their child for the first time. I was lucky and only waited 7 days but they were the longest 7 days of my life.

So why talk about this? It’s scary and many never need to know this information.

My son’s first bath. We kept him swaddled so he wouldn’t get cold. He’s still so small he fits in a “puke” bucket.
My son was almost 2 mo this old before he wore his first clothes. Even preemie sized was too big.

That’s exactly why. It’s SCARY AS FUCK and those of us who do need to know wish we did before it was happening.

I wish I knew more before it was happening so I could make better decisions (yea I know I did the best I could). I wish I knew before so I wasn’t trying to have to make these crazy important decisions about my child’s life while I was delirious and drugged and in pain. Or over the phone when I got a call from the NICU and wasn’t there to be with my baby. Or while I found myself in the OR at a different hospital than my baby.

Once he could regulate his temperature enough to not need to stay enclosed he got to see a mobile. He was very fascinated.

I wish I knew before I was handed a breast pump before meeting my child. Or before I basically made the decision to live in the hospital.

Going home! Depending on your baby’s weight you have to get a smaller car seat or even car bed to accommodate their tiny size.
These days he’s a mostly healthy, super active, always exploring 2 year old.

There is nothing easy about having a preemie. And No DEAR – no matter how miserable you feel while pregnant it is NOT worth having your baby early. So I hope some of this can help someone.

Thanks March of Dimes, NICU Helping Hands, Hand to Hold, Grahams Foundation, and all our doctors, nurses, and therapists that have gotten us here today.

Nightmare Come True (Part 4 and Final)

A temporary sigh of relief!

The breathing treatment worked and his stats are improving. He still requires high amounts of oxygen support but for the moment we are ok.

We still don’t know on the blood work. If it comes back not so great we are still getting transferred. If his breathing worsens again we are still looking at high flow and transferring.

I feel as if we are holding our breathe yet trying to breathe for him at the same time. Have you ever seen an over active 18 month old just roll over and pass out in the middle of the day while in the middle of conversation? …. I have. It’s scary.

Glowing toe! Pulse/ox

Still small enough for leg cuffs for blood pressure checks

…….

The hours tick by. He’s still doing relatively ok.

Finally the answer to blood work…. it’s normal. Thank goodness. For now we get stay put.

Goals

-get oxygen down to 1/2 liter or none

-get fever gone

-get the wee man to drink enough fluids to not require an IV

-no longer require the hospital grade suction from the wall – aka manage with a nose frida or a bulb syringe

…..

How to entertain an 18 month old in isolation- wagon rides back and forth in the room

Surprise visitors brought a wee man sized sloth!

Oxygen lasso while we test no O2 while awake

“If I can’t go outside can I at least look?!”

A couple surprise visits (including his primary NICU nurse) and a few days of lots of work and more breathing treatments we managed all the goals and got to home.

EZPap – not quite CPAP but similar. For a few minutes every few hours it forces air into the lungs to make them open and not close all the way when you breathe out …. and yea they hate this

Nightmare Come True (Part 3 of however many more it takes to tell the story)

Reality check. Nightmare was just beginning.

Second night in the hospital and little man’s oxygen stats drop and drop and don’t come back up. And this is already after having to wake him to get him a new IV.

We try increasing oxygen again and again and again but nothing, no improvement.

Doctor has been called and now we’re having the discussion about what happens next. About returning to high flow oxygen (oxygen with some pressure to help force lungs open), about being transferred to the main hospital, about going to ICU. Those three letters. The real nightmare. The fact we even have to discuss it is anything but ok.

……….

We have one more thing to try. If it doesn’t work – high flow. Also a blood test to see how his body is reacting. There’s a point at which the body reaches a guarantee it will need more support even if it is ok now. If this test shows he’s reached that point, even if we get him breathing better we will be transferred.

Holding our breathe.

Last attempt at a breathing treatment works. His stats start coming up. He’s still requiring extra oxygen but we’re ok for now.

Still holding our breathe on the blood test. We still don’t know if we’re really improving or if this is temporary.

To be continued…

Nightmare Come True (Part 2 of 3 … well maybe 4)

We didn’t make it to the next day.

Instead we ended up rushing ourselves to the closest Children’s Hospital ER. Not going to lie….I was flying through a construction zone at night. My little man could barely breathe and it sure as heck wasn’t getting better with the home medication.

It felt like forever getting into a room, waiting for a doctor. Sitting there and the monitor says he’s getting enough oxygen but I just know something isn’t right and he really can’t breathe.

FINALLY a doctor … and thank goodness she ordered an x-Ray of his lungs.

Pneumonia…

Black is air. White is bone or fluid

Damn that sucks. His lungs really aren’t up for tackling that.

At first the conversation was going home with antibiotics. The more we talked and the doctor got the full story, the more it became obvious he needed to stay.

At this point he’d have a fever for 14 days!!! He’s also not eating or drinking which means he’s getting more and more dehydrated every minute. Plus he’s a preemie – it doesn’t take much for things to go from bad to deadly.

A while back I shared a friends blog about how couldn’t go back. ( https://www.lifeafteryou.org/home/on-the-other-side-of-the-sanitizer ) That’s exactly what we’re doing. We’re going back. Back to living in a tiny room hooked up to cords and wires and oxygen.

For me this is more than just being in the hospital with my very sick son. This is reliving the NICU.

We make it through that night. Antibiotics and IV fluids started. Trust me when I say no on e wants to pin their child down for the things that you need to do to make them well….IVs, nasal suction, breathing treatments, etc.

The next day was another test. This time they swab is nose and send it off to see what grows. Tests for all sorts of viruses including the different flu strains and also a couple rare bacteria.

Comes back positive for RSV and Adenovirus. Both respiratory viruses that are extremely dangerous to those with weaker lungs and compromised immune systems. Both of which my preemie son have. RSV is so scary for preemies it’s literally something there’s extra precautions for and the main reason we keep our littles in bubbles and act like hermits when we get out of NICU. It can very easily kill a compromised child.

This….this is a preemie Mom’s nightmare.

To be continued…

Nightmare Come True (Part 1 of 2 maybe 3)

I’ve spent a lot time thinking and rewriting how I would share about this. How I would share about a nightmare come true. I wrote a draft basically telling everyone to F***ing wash their hands and cover their mouths. I wrote a draft that probably was a wee be too sciency for most.

Today we are home! Those words. We’ve said them before coming home from NICU. Doing a happy dance (yes literally) when we got told we’re going home.

Thank you Peanuts for teaching us how to Happy Dance

Yesterday we did that happy dance all over again.

On Valentine’s Day I got a call from my wee man’s child care provider he had a low fever and wouldn’t stop crying. After 6 days of a yo-yo fever and no other obvious symptoms I took him in to get checked out. Strep and flu negative but a bit of a red throat. Aka – no big deal probably just a little cold give it a few more days.

Sick and stealing cookies… can’t be that bad?

Next day urine reaks…I’m talking his pee only diaper smelled like the worst poopy one he’s had… REAKS. Ok so it must be a UTI.

Nope. Culture comes back negative and now he has a cough. 24 hours after cough develops its way worse and now sounds like wheezing too. To the ER

“Sounds like croup.” Treat for croup – responds – pediatrician agrees the following day.

In ER and yet he’s smiling

Now it’s Wednesday. Night before had been up and down. Morning ok. After nap little man sounds horrible. I’m thinking it’s the strider (sounds kinda like wheezing but more high pitched sound that comes with croup). Hot shower….still just standing there looking at me like he can barely breathe.

Pediatrician has an immediate opening so we head there and find out he’s actually wheezing. Thinking it’s just the virus effects on his preemie lungs. He responds to a couple nebulizer treatments and sounds and looks better. So we go home with the same medication for over night with plans to re-assess the following day.

Nebulizer at pediatrician
Playing while waiting to see if meds helped

Suction machine at pediatrician

Mom I don’t feel good

We never made it to the following day.

To be continued…

Another and Another: the ever growing list of therapists

This one is for all the special needs mommas (and daddy’s) out there.

When you have a kid you never think of needing any sort of therapy for the child in their first few years of life. Yea maybe when they’re older they’ll fall and break and ankle and need a little physical therapy after. But that’s really all you consider.

When you’re told you’re at risk for pre-term labor, no one tells you ANYTHING about what that really means.

When you’re in the NICU they kinda mention you might need to continue therapy outside the hospital. They mention that maybe in a few years some disabilities might appear.

But no one tells you of the reality.

In NICU therapy is often just the simplest thing such as touch

Therapy starts in the hospital. Then again as soon as you can manage to set up services when you get home.

We started with just occupational therapy (OT). Then a few months in it became apparent that more help was needed. So add an early childhood education specialist (ECSE).

Working with our first home OT on tummy time that works with reflux

Now it’s being noticed that major motor skills are lagging and uneven. While OT can work on this, she really needs to focus on sensory issues and fine motor skills. So add physical therapy (PT).

As we keep working on eating more solid foods we’re struggling with allergies and sensitivities along with simply getting enough calories from solids so we could wean. Now we not only need to see an allergist we add a pediatric dietician.

Working on being ok with new textures in the mouth

So now we have four different specialties coming to our home. Some weekly, some every other and some sporadically.

We’ve finally got a kid who’s doing great in major motor skills- walking and just about running. But his verbal vocabulary is almost non existent. No “momma” “dadda” here. Though we know he can. He likes to tell the dogs to “sit” ( which more often sounds like shit 😂) and I’m pretty sure he’s trying to say “this”. He communicates- just not with words. So here comes speech therapy.

And all the while we’re on a waiting list to see a specialty team that works with children with developmental struggles. Who knows how long that will be or what other list of therapists they will have to add. (Are there even anymore specialties???)

Oh and nope we haven’t hit that few years mark. This all before the age of 2.

So to all you others wondering how to do it. Hang in there. You’re not alone.

One more for cuteness. Working on balance with PT