Noah's Incredible Journey: 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.

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