Thursday, October 8, 2015

Almost A Year Later



 It's hard to imagine that this guy spent the first few weeks of his life juggling ventilators, blood transfusions, x-rays on his head and lungs, ultrasounds on his liver.  You name it, he overcame it.  And now? He’s almost ONE.  An entire year old.  

Where did the time go?


On a regular basis in the NICU, he had visits from a Cardiologist, Neonatologist, Neonatal, Radiology, Respiratory Therapist, Physical Therapist, Occupational and Feeding Therapist, Ultrasound and more. 

We learned terms like apnea, bradycardia (brady), desaturations (desats), PDA (Patent Ductus Arteriosus), reflux, RDS (Respiratory Distress Syndrome), Retinopathy of Prematurity (ROP), surfactant (this is what keeps your lungs from sticking together when they close – Noah needed this when he was born since his body wasn’t yet able to produce it on its own, and so many more, I am now a walking NICU encyclopedia.  

We had tests for blood gases, CT scans, echoes on his heart and head ultrasounds for cranial bleeding.  We learned about TPN (the essential nutrients (proteins, fats, sugar, vitamins, and minerals) and water Noah received through his PICC line) (think central line). 


Oxygen was a constant topic of conversation – Noah would breath over the machines keeping his lungs working to the point that the machine was working against him.  But he wasn’t strong enough to come off the vents at first, so it was a delicate game of balance the staff played to keep him alive.  From the CPAP to the vent to the high flow nasal cannula to room air.  The breathing journey is a big one and he powered through it from day one. 

Noah had an umbilical catheter, a tiny catheter inserted into his umbilical cord so that small amounts of blood could be drawn for tests without using a needle.  One or two drops of blood from a 1 pound, 10 ounce person can be like a pint of blood from a grown adult. 

We became experts at navigating tubes, wires and more.  Learning how to touch him so that his raw and underdeveloped nervous system didn’t go into overdrive was a challenge, as his mom, I wanted so badly to kiss and touch every inch of him.  The monitors became background music, always alerting us to his needs and comfort level.  I’ll never forget looking at him in the open air crib with just a pulse oximeter on. 



Despite starting his life off living basically on life support inside a plastic box and other than being small for his age and a little behind his peers, you can barely tell that he had such a wild ride making his way through the first few months of his life. 

While we are still in therapy, he’s again powering through that and we are now dropping his OT frequency to every other week (with PT still weekly for a while). 
We never would have made it this far without the faith, love, support and prayers of our family, friends and complete strangers.  I look back at how jam packed this last year has been and it’s a wonder we made it through in one piece.  It’s simply amazing. 




He’s so smart, analytical and curious while fearless and brave.  Noah is starting to show typical boy-ish characteristics and it’s been an absolute joy to learn how different raising a boy and a girl can be. (I sure have been peed on more often than Grace)

 Lately, you can see his personality start to really show through – he’s silly and loves to laugh, he enjoys snuggles and being held, but plays really well on his own.  The child never passes up a meal and if he sees you eating, he will practically beg for a bite or four of what you have in your hand.  We started purees around 7 months after some oral aversions but Noah was having none of it.  He’s decided it’s only real food for him and eats whatever we eat now.  We are transitioning to whole milk from breast milk and he’s doing well with that.  He’s a big flirt and loves to smile at everyone he sees.  The biggest smiles are saved for big sister Grace who has been wonderful to share her toys with him.  She recently has been telling us that certain toys can be Noah’s now because ‘I’m a big girl’.  



We’ve all changed this year.  Personally, I’m finally processing everything we’ve been through this past year.  I was so busy with therapy, specialist and every other appointment that I didn’t have time to really reflect on what we went through.  I became a warrior but it wasn’t without scars.  Greg is amazing – the best dad I know, my best friend and all-around wonderful. On top of training for a full marathon this year, Racine 70.3 next year and Madison 140.6 in 2017, he takes Noah to therapy every Tuesday without complaint, puts Grace to bed while I put Noah to bed and still has time for everything else life throws at us.  And he never complains.  I started a new job an hour away and while the drive is longer than usual, I enjoy the time to catch up on podcasts and not be in charge of anything for a few moments.  Now that we have made it a year breastfeeding, I can start focusing on myself and get back into training for a sprint triathlon in the spring. Grace will start 4K in the fall next year and is insanely smart.  She’s started going to open gym at the local gymnastics club and we may sign her up for that or dance.  Grace has grown into the sweetest, most compassionate and silly little lady.  She’s opinionated, strong-willed and a natural leader.  All chief, no Indian.  I don’t know where she gets that from…











The coming year brings less craziness and more settling for us and we are thankful that our new normal includes two healthy children, a loving partnership in each other and a strong village surrounding us. 
I didn’t always agree with or trust His plan for us, but what an amazing life we’ve been blessed with.   

From this: 



To this: 


God is SO GOOD.

Wednesday, April 1, 2015

The Angels Of The NICU

Today I ran into my high risk maternal fetal medicine doctor. What do you say to the man who saved your son? Who did what it took to keep him safe inside me for as long as humanly possible? I think of the NICU nurses and Noah's Neonatal team with that same reverence.

How do you properly thank those angels who dedicate their lives so that when my son needed to be kept alive, they were there, ready to step in, take over and carry him when I no longer could.

To say I am grateful is the biggest understatement of the century. I am humbled and so very thankful.
As I snuggle with Noah in my arms, not wanting to put him in his bed, wanting to stare at his perfect pouty lips and his ears that look just like Greg's, or his delicate little eyelashes... I can't help but feel blown away by it all.

We are here, on the other side. About to celebrate a normal holiday like a regular family. No more high risk, no more NICU. Sure, we have therapists and more appointments than we can count, but those are just details.

So for now, I'll carry my thankfulness in my heart and stare in awe at this perfect little miracle I am blessed to call mine.

Saturday, March 21, 2015

Five Months Breastfeeding!

This little champion has made it 5 MONTHS breastfeeding today! I'm so proud of his transition from nutrition through a central line to a feeding tube to tiny little bottles to breastfeeding like a boss! Here's to at least 5 more months!

Thursday, March 12, 2015

Old Friends

Noah and I ran into his NICU best friend while at Children's today!! I can't believe how big she's gotten!! 


Thursday, March 5, 2015

4 Month Appointment

This little man had a big day. He hit 10 pounds today! As his nurse says, he never passes up a meal. ;)  




Poor thing had 2 heel pricks for blood tests and had to go back for an arm draw. He got 3 shots today as well. Noah is such a gentle fighter, he cried while everything was happening and then immediately stopped once I held him. He's gotten lots of snuggles tonight.


We have a lot of important appointments coming up. His hemangioma (the birthmark on his tummy) needs to be looked at since it's changing shape and has broken open in a few places. We'll go to Children's for that. Another Children's appointment is to see a pediatric surgeon for hernia surgery. That will most likely be an overnight stay and should happen in the next few months. 

In addition to his occupational and physical therapy visits, we'll head back to Aurora Sinai for his 6 month Developmental Clinic. Looking forward to blowing his Neonatal team away with how big he's gotten and how great he's doing!

His Cholestasis is under control! He'll likely be on the medication for his liver until he's one, but we don't have to go back to the pediatric GI specialist for 3 months!

I'm thankful he's alive and healthy. I'm thankful God felt I was strong enough to be his mom and advocate for him. Many NICU preemies go home with many more life-altering conditions. Our hearts break to watch him go through these procedures but he's tougher than all of us combined.

And none of the hubbub of the day stopped him from flirting with the nursing staff.  Lots of smiles and coos to go around.

He's getting much better at holding his head up. He's still trying to figure out how to roll over, I think he's really close to actually doing it. He sleeps for 5-6 hours at night straight and loves his big sister. (she's awesome with him!)

All in all, these are so all just details, things we have to muddle through. He does all the hard work, we're just along for the ride. So proud of our miracle fighter.

Thursday, February 26, 2015

::toot toot::

::toot toot::

I'm really proud that I've made it 4 months breastfeeding Noah. Somehow, despite coming 10 weeks early, weeks that turned into months without actually breastfeeding, overcoming feeding tubes and a micropreemie who had to learn how to suck, swallow and breath at the same time, it's been much easier this time around. It wouldn't happen without the support of my husband and all of my friends and family. And it's working! Noah is thriving and I'm so blessed and proud that my body has sustained this little guy long after the wires, tubes, vents and isolettes were gone.


Wednesday, February 18, 2015

8 Weeks Later

What a difference 8 weeks makes! He went from 4 pounds to almost 9. And it feels like he's just always been a part of our family. He still loves bath time too!