The Kyle Chronicles, Volume III

Today, Mr. Kyle is 

ONE MONTH OLD!

(Which translates to 28 weeks, 6 days gestation)

For any parent, the day their newborn turns one month old is a big deal; marked by a plethora of pictures and Facebook posts about how they can't believe it's already been a month and gushing about how unbelievably adorable their baby is at 30 days old. And rightly so.

However, when your micro preemie, who should be kicking around in utero for another two months and not kicking back in a NICU isolette, reaches that one month milestone, it's a more momentous, celebratory event.

It means that your baby lived. He survived.

The idea that your baby might not make it, that he may succumb to sickness or severe prematurity, is never far from a micro-preemie parent's mind. Whenever I see "NICU" pop up on my phone, my heart is literally in my throat when I answer the call. And while constant communication with the NICU personnel has yielded a range of good and not so good news, the truth is:
Kyle has survived!

 He made it through the ups and downs, the good days and the trying days, one major surgery, and has been a living, breathing miracle and inspiration. 

That, alone, is reason for a small and hesitant exhale, not to mention a well-earned celebration. 

Anyone for cake? Or carrot sticks (new year's resolutions and all)?

This past week was a trial of faith...and cough drops.

What happens when your family comes down with a cold? NO NICU for you!

In an effort to keep preemies free from cold and flu germs, you get banned from the NICU when you're sick. I don't disagree with this practice in the least as a simple cold could be fatal for preemies.

Here's the thing about balancing your home life and hospital life: it's incredibly challenging and there is no one-size-fits-all solution to effectively managing "the new normal." When you're stuck at home downing lemon tea and Zicam and unable to see your new baby, there is no more sophisticated way of saying that it sucks, than it sucks, plain and simple. It's living with half your heart 20 miles away from home and relying on busy nurses to return your 10th phone call of the day to check on your newborn. It's silently cussing out everyone you've ever met who has ever had a cold and sneezed in your direction, or failed to wash their hands (and it's an entirely irrational way of dealing with the fact that you're trapped at home trying to get better while your micro preemie spends his day with his nurses and not his mom). So, this past week was rough on everyone. Clarke still isn't well enough to visit Kyle--and he hasn't seen him in almost a week and a half! Stupid, stupid, stupid, stupid cold. I was only out for four days as my "cold" was merely a one-day-only scratchy throat, but I stayed away just to make sure that I wasn't going to fall victim to something more sinister.
Like a sneeze. Or a cough.

Here's what happened with Kyle while we were home, bitterly nursing our inconvenient colds...

The good:

Kyle chunked up to 2lbs 10oz!

He graduated from micro preemie diapers to preemie diapers (which drown him!).

He got even cuter (as if that was even possible)!

His breast milk intake was increased! 

His oxygen was decreased!

The worrisome:

Kyle's heart murmur became louder and a cause for immediate concern. 

He had two echocardiograms.

His PDA (Patent Ductus Arteriosus) had opened back up.

The VERY good:

The cardiologist does not believe that Kyle's PDA warrants surgery yet.

(Ky's doctors had anticipated a PDA ligation surgery over the weekend)

This news is the very epitome of awesomeness as it buys Kyle time;

time to grow, gain weight and mature, all critical factors in the success of surgery 
for preemies. Every single day counts!

As I watch my son grow and change and triumph, I can't help but fall deeper in love.

In spite of the rough days, the challenging delays, the long, exhausting schedule and the physical fatigue of managing my time between the NICU and home, between my hospitalized newborn, my two kiddos at home and my smoking' hot husband, I wouldn't trade it for anything. Kyle is worth every second of missed sleep (four hours of broken sleep at night isn't cutting it...), every wonder and worry, every pang of guilt and hour of stress. He is an incredible gift from above and we love him more than anyone can possibly imagine.

As for Brock and Cami...
They're along for this wild ride just like mom and dad.
It's not an easy schedule on anyone, but it's not a forever schedule.
Our deepest and most sincere gratitude go out to our family and friends who are
watching Brock and Camryn so that we can be at the hospital with Kyle.

Kyle's corner: a collaborative effort by mom, dad & big brother Brock:

The Kyle Chronicles Volume II

Major iPhone photo dump ahead...

Hauling my camera equipment to and from the NICU is impractical. I only bring my camera in once a week and rely on my phone to capture all other events. Plus, I'm so tired that the very notion of having to upload and process images makes my head spin.

Kyle has had two very exceptional weeks. 

He is now three weeks old.

2lbs, 4oz and 14" in length. 

This past week, after demonstrating remarkable breathing abilities, he was removed from the ventilator (which was only set up as a back-up plan should Kyle decide to take a break from breathing--which he never did). He has been upgraded to a high flow nasal cannula and fluctuates between 23-21% oxygen. That's really low--which means, Kyle breathes room air beautifully, most of the time. Once in a while, when he's nestled into a deep sleep, the nurses turn up his oxygen to accommodate his rest. And that's okay. He is, after all, only 27w4d gestation. 

The nurses playfully refer to him as their over-achiever because he prefers room air (21% oxygen), unlike most micro preemies his age who require more breathing assistance. 

I like to think that he has rockstar lungs. 

Christmas Eve was a big day for us. It was the first time that I was able to hold Kyle! 

Unlike the traditional newborn snuggles, Kyle requires a very specific type of holding called kangaroo care, or skin-to-skin. Wearing only his micro preemie diaper (which, let's face it, is all that fits), he is gingerly laid on my bare chest (I'm wearing a tank top for clarification) and we snuggle, reclined, for about an hour or two. 

Kangaroo care has many advantages for both mother and baby.

First of all, it helps with bonding (obviously), lactation, helps baby to regulate body temperature, mimics the soothing environment of the womb, boosts his immune system, enhances his weight gain (hopefully not mine!) and growth, shortens hospital stay, reduces apnea and uneven breathing, stabilizes heart rate, and reduces stress (just to name a few). The NICU is highly supportive of kangaroo care and encourages moms (and eventually dads) to "hold" their preemie daily. 

And, it's the best part of my day (well, second to the hugs and kisses of my Brock and Cami at home).

 Kyle's eyes were fused shut at birth, as all babies eyes are, in utero. It was about a week and a half later that he began to open his peepers. It may appear that he is focused on something when his eyes are open, but he really only recognizes light and dark at this point. 

BLONDE!

Kyle receives nutrition and small amounts of breast milk through a NG tube. Initially, it was positioned through his mouth, down his throat and into his stomach. Now that he has been upgraded to his nasal cannula, the NG tube goes through his nostril and down his throat. Sounds miserable, doesn't it? Fortunately, he doesn't seem to know it's there. 

Breast milk is crucial to preemies. In fact, we were asked to sign a permission slip that would allow Kyle to receive donor breast milk if I was unable, or chose not to, provide breast milk. Formula is not recommended for babies of this gestation. I really enjoyed breast feeding Brock and Cami and look forward to *hopefully* doing the same for Kyle when he's old enough to learn to latch (around 34 weeks). In the meantime, I pump around the clock, every three hours, night and day. It's exhausting, but the benefits will be well worth it. 

Clarke grew a beard. Just for me! That's true love!!

Clarke was able to hold Kyle for the first time this past week. It was an excited day!

I'm sure these two will share a special bond. 

 They say that in the NICU all progress is two steps forward and one step back. Everyday when I walk into the NICU and speak with the nurses and specialists, I try to brace myself for that "one step back." It hasn't happened this week. Or last week.

In my heart, I know this is because there are thousands of prayers being offered on Kyle's behalf and that Heavenly Father is blessing him (and thereby blessing our family). My sincerest thanks for those who include Kyle in their communing with Heavenly Father. Prayer is a most powerful tool and it's profound effects are evidenced in everyday miracles. Like Kyle.