Numbers. My life revolves around numbers.
Oxygen level, rate of breathing, heart rate...
Time I pump next, ounces I pumped, time of day we plan to visit the hospital...
Colton's weight each day, bilirubin [jaundice] level, level of oxygen pressure on the cpap, level of oxygen pressure on the high flow...
Volume of milk each feeding, duration of feeding...
SO. MANY. NUMBERS.
& it's hard not to get fixated on these.
I wish I could hold my son in the comfort of our own home but instead I hold him in a little room on the same chair while I constantly look at a hospital screen... at numbers.
When I hold him, I have a handful of cords and tubes to navigate while I carefully pick up his little body, put him to my chest and sit down on a tan recliner chair that absolutely sucks at reclining. When this isn't your first rodeo, making the transition to the chair is almost as if I'm on autopilot. It doesn't even phase me to carry a baby + a bunch of medical equipment. Every time we visit him, we do skin-to-skin. Meaning, we take our shirts off and hold him to our chests. As much as I love these moments, I grieve the ability and the experience to hold my child in a normal way that every other mom gets to do. I grieve holding my son in a cradled position or in a baby carrier. I also grieve the ability to put cute clothes on him. It's easier to keep him naked right now in just a diaper (while swaddled) so they can look at his chest and retractions when assessing him. Because...
Colton's "issue" is his rate of breathing. His fast breathing pattern is higher than it should be right now. On average, newborns breathe anywhere between 40-60 breaths per minute. But Colton is breathing about 80, sometimes 90 breaths per minute... and that's what's keeping us from moving forward. He's needing extra pressure through a nasal cannula to get oxygen deeper into his lungs... and until he's able to show us a slower breathing pattern, learning how to feed via breast or bottle is put on hold. Which makes everything feel like we're at a total standstill.
I remember going into labor at 32 weeks + 3 days thinking Colton's lungs will be more developed since he lasted 2 1/2 weeks longer than Dustin did. I had so much hope and optimism that Colton would need just a little short-term oxygen support and that our stay would be much shorter and easier. But he's shown us the opposite.
We didn't realize until after Colton was born that him lasting 3 weeks in the womb after my water broke did NOT actually help his lung development. There was just too much lack of fluid around him. So although gestationally he should have stronger lungs, he doesn't. He's still breathing too quickly and unfortunately we think it's going to be quite awhile until this gets better. We can't start working on feedings quite yet because he won't be able to suck, swallow AND breathe at the same time when his respiratory rate is still too high.
We feel defeated. We feel incredibly frustrated that this process has been at turtle speed. As time passes while we continue to stay in the same place day after day, it's disheartening. It weighs very heavy on our hearts.
He HAS made some progress, don't get me wrong. It's just not enough to feel like we're making any sort of big leaps by any means. I'm beginning to think he won't be home in time for Christmas. I'm trying to be optimistic and that's still our goal... but I've always been one to think the worst so I can mentally prepare myself ahead of time.
My heart hurts. It's torn every damn day having two kids in two places... two boys who both need their mommy. Two boys with different needs right now. Two boys who need my attention and love in different ways.
It feels impossible not to compare Colton's journey to Dustin's. DJ was in the NICU for respiratory support too but his respiratory journey was different. He never really had issues with his rate of breathing like Colton is having. He had his own issues... which Colton isn't having. So although we're use to the NICU world and all the ups and downs that come with it, it's a different child with a different path. Not even our past experience prepared us for how we've been having to navigate this one.
So please pleaseeeee PRAY for Colton's lungs to strengthen and mature so we can surpass this "hump" of our journey and begin the feeding phase of all this. I know we have a huge team of prayer warriors and I ask all of you in our team to continue praying each and every day.
To shift gears a bit off the oxygen and lungs topic...
A little over 2 weeks ago I got a call from the doctor down at Children's Minneapolis letting us know that transferring Colton to the NICU at Mercy Hospital was an option for us (the NICU at Mercy is actually run by Children's... it's just a much smaller unit for the North Metro area). As much as this sounded like amazing news, I was so nervous about it. HOW are we supposed to leave our place of comfort and familiarity? We trusted the Minneapolis location so much because that's where DJ was his whole 54 day journey. It sadly became our "home away from home" 3 1/2 years ago and quickly started to become that again. Transferring to a brand new place that we weren't familiar with seemed scary.
But the more Michael and I talked about it, the more we started leaning towards transporting. With Colton not being a complicated baby (meaning, he just needs some basic NICU support with his breathing and feeding), we felt comfortable to go through with moving him closer to us. So that's what we chose to do and we are so glad because it's made the commute so much easier on us the last two weeks. We also love the vibe at Mercy's NICU. It's much more "home-like" than the Minneapolis location. It's not so sterile and WHITE everywhere. The hallways have color to them, the rooms are bigger and cozier and overall it's just quieter and more calm.
Ironically the doctor that was on the first week of Colton being at his new location was the same neonatal doctor that told us all that heartbreaking, shocking news the day of Colton's birth. The same doctor that completely jumped the gun and made claims about our child before we even had the chance to see him for ourselves. The same doctor that totally ruined our entire birth experience.
And on the very first day of him rounding on Colton... which was exactly one week after he made those initial statements... he was in total awe at how much our little guy proved him wrong. And as much as Michael and I had a bad taste in our mouth about this man, he did apologize for speaking too soon and said sorry for scaring us.
I mean... at least he owned up to it and apologized. Not every doctor would've done that.
If you read my last blog post about Colton's birth story, you know how much the shape of his skull has changed drastically since birth. It's truly incredible. Although he's come a LONG way and his head looks amazing, he's continuing to get early intervention by being positioned in ways to help mold his head even more.
I'm trying so hard to capitalize on the positive things going on. Because there are SO many positives. His head shape looks great. His brain, heart, and kidneys look healthy. He's gaining weight. His color looks perfect with no more jaundice. He's tolerating his feeds. I mean... I could go on. He really is doing great. But the one thing he needs support with tends to be the only thing our minds fixate on.
After some really difficult days and a lot of crying, one of our nurses reminded me and Michael to just be present with our son when we're in the room with him. She reminded us to look at all the positives about him. That all the "medical" things about him are healthy and OK. That the immature lungs will get better over time... that it's not something "medically" concerning or long term.
But it's still SO HARD you guys. I cry all the time. I feel guilty no matter what child I'm with. My heart aches being torn every day. My overthinking self always thinks worse case scenario and it takes everything in me to find patience in all of this.
This morning I finally went back to the gym and it was such a breath of fresh air. After two months away, I was finally back in my happy place. I need it more than ever for my mental health. It's a place for me to feel good about myself and just decompress, let my stress out and a place to feel some bit of normalcy again.
When I was there earlier, someone said it must be nice though to recover and relax right now without having a newborn sucking all my energy out of me at home. And although I know he didn't mean it in a hurtful way by any means, I absolutely hated hearing him say that. It just puts into perspective how little people understand the immense pain and emotions us long-term NICU parents deal with.
Because here's the thing... I WISH I was being woken up in the middle of the night to a crying baby instead of an alarm to get up and pump. I wish I was changing diapers around the clock instead of constantly checking the little camera that hovers above him. I wish I was exhausted from sleep deprivation instead of being exhausted from all the crying.
Not to mention... I never got a recovery or any relax time anyway. In fact, I had NO ability to recover at all after giving birth. The second I got discharged from the hospital I was thrown into this season of life... commuting back and forth between home & the hospital every day while also giving tons of attention to DJ after being gone for almost a month. I had no time to sit down...
So what's recovery? Because I envy the women who actually get to.
"So when do you think Colton will be coming home?" is a very common question I get. It's also a question I hate.
I know this question comes out of total normalcy. It's a fair question and only comes from people who have never been through a NICU experience before. So I get it - I don't blame any of you for asking. But... it's a question we cannot ever answer. Because there's just no definite end in sight. Especially with Colton's super slow breathing progress. Every baby has different needs and develops on their own timeline. Nothing can really be predicted. Which is a large reason why the NICU world is so challenging.
And as hard as it is for me to have patience through this process, I know his lungs will get there. I know his lungs are getting stronger every day even though the uphill changes seem so minimal day-to-day. But I just want Colton home for Christmas. It's all I want. It's all I pray for. It would truly be the most amazing and special holiday gift in the world.
I'll update again soon, xo.
Here's a photo of our little guy ♥️
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