Tag: growing up

“you mine” (& other N-isms)

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Now that Nicholas is learning to talk he likes to talk. A lot.  For the life of me I simply have no earthly idea where he gets this trait from!

Here are a few N-isms that run rampant in our life these days:

Ba-NAAAAN-a.

Bananas are minions’ favorite foods. At least once a day he walks into the kitchen and signs & says “Ba-NAAAAN-a peez.(please).” He will even show you where they are in the kitchen if you have somehow forgotten what a banana looks like or where they are kept (nevermind you are probably the one who bought them at the grocery store). “Ba-NAAAAN-a” is also what we call anything yellow. We have a large print of a lemonade canister hanging on the wall in our kitchen that our friend Jen took at our wedding. It is not yellow. It is “Ba-NAAAAN-a”. He will point to it, sign “yellow” & shout “Ba-NAAAAN-a”.

It rain.

Nicholas is learning all about weather. And his favorite “weather” is rain. Anytime it starts to rain he will go to the door and shout excitedly “it rain! it rain! mama, it rain!”. After the rain stops he will point outside & say “it wet.” When you ask him why its wet he will excitedly tell you & sign for you that “it rain!”. Now that we are in full summer heat & humidity here in NC some mornings we wake up & there is a bit of dew on our windows. He will point & say “it rain!”. Right now we aren’t explaining the difference because, hey we could use the rain these days & because you never know, it might rain soon.

Min-Min.

This is what we call the minions. Nicholas knows who the minions are & where they live (in the TV, the DVD player in the car, and on the Kindle). When he sees any of these items he asks “Min-min now?” (Can I see the minions now?). He doesn’t argue when we say no; he shrugs & moves on. Somedays he’ll ask a few more times as if you might not have heard him. It’s very “are we there yet? how about now? now? when?” of him.

“Hup”.

Help. As in “Can you help me open these fruit snacks I went & got out of the pantry all by myself because I know where my snacks are & I dont need your help raiding the pantry; just opening my loot.” This is also found in conversation when we need “hup”opening the play-do we will ultimately try to feed to the dogs.

“I not (k)no(w).”

This was his 1st sentence & is still a favorite. “I not know” who pulled all of the blankets out of the drawer. “I not know” who colored the wall with red chalk. “I not know” who fed my sippy cup to the dog.

You mine.

This one is my absolute favorite. When you ask him what/who things are he will usually respond correctly.

“Who is that?” “Dada.”

“Who is that?” “Dog.”

“What is that?” “Ball.”

“Who is that?” (when pointing to me) “Mine.” Even when I say “Who am I?” “You mine”. “Am I mama?” “M-hm. Mine mama.” Here’s hoping he always know I am his. And he is mine.

 

“I not no”.

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Nicholas has a bright yellow wiffle ball bat. He’s always liked it. He likes to swing it as he walks around the house (its a miracle nothing has been broken), he uses it as a pointer when he would like you to look at/get/share something. It goes outside, upstairs, downstairs, anywhere really.

This afternoon Nicholas & I were playing together on the floor. He was happily emptying his toy box when he found his yellow bat. He picked it up, walked over to me, and without hesitation bopped me on the head with it & giggled.

It didn’t hurt (ok, maybe it dinged my feelings a bit). He wasn’t being vicious or spiteful; he was playing. It didn’t matter though because we needed to learn the important “we don’t hit” lesson. (Andy would like it known that we do “hit back” when prompted. This is a sticking point for him – “Don’t hit 1st but if someone hits you buddy, sucker punch ’em back.”. Chalk it up to old school playground politics, I guess).

So, I took the bat from him and looked at him square in the eyes & said “No. We do not hit.”. He stared back at me intently; you could see the wheels turning. He raised his index finger (as a pointer since I had just taken the yellow bat from him) and said clear.as.day:

“I not no.”

“I not no” was my N’s 1st sentence. Ever. In his life. He didn’t stumble over the words. He was clear & direct. And I was shocked.

What I hoped he meant: “I did not know to not hit you on the head with my yellow bat. I am very sorry. I won’t do it again. I love you. Have I told you lately how purdy you are, mama?”

What he most likely meant: “I am not NO and you can’t tell me NO.”

When I told Andy what happened he laughed & said “He meant the latter. He is your child, remember. You’re both stubborn.”

If that’s not the pot calling the kettle black I simply do not know what is. Bless.

5 things you learn when road tripping with a toddler

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We spent the beginning & end of our Easter holiday in our car. For 16 hours. With a toddler.

We drove to what I lovingly refer to as “yankee-land”.  Andy calls it home (or Pennsylvania). It wasn’t Nicholas’ 1st time to yankee-land  Pennsylvania but it was his 1st trip as a toddler who is aware of his surroundings & can let you know (loudly) how happy or sad or angry he is.  This type of trip requires a level of patience & grace that between the 3 of us we collectively might have. I tend to seek out the humor (& the road side bathrooms), Andy reacquaints himself with his yankee road rage pretty early on into most road trips (more on this in a minute) & Nicholas finds a reason to laugh, sing, or shout at the most inopportune but hilarious moments.

Here’s the Top 5 Things You Learn When Road Tripping with Our Family:

  1. Road rage & backseat driving are inherited traits. From the father’s side of the family. About 2 hours into the car ride we were stopped in some light traffic. Andy had finished his latest “This is ridiculous. Move people move! The gas is on the right!” tirade when we heard a confident voice from the backseat demand “GO.”. And again “GO.”. And finally “GGGGGOOOOOO.” complete with a semblance of a certain hand gesture (I really don’t want to admit I know what hand gesture he was trying to make while demanding those in front of us “GO” – remember this is inherited from his father. Not me. Never.)
  2. Apparently I do now know how to “GO” like Nicholas & Andy. They both now like to tell me how to drive. Bless.
  3. Veggie Tales Songs are catchy. We have a DVD player in our car & this trip was the 1st time Nicholas was able to enjoy movies on our ride. He loves Veggie Tales. LOVES it. So much so that we watched a few of the movies several times through. The songs are catchy.
  4. Veggie Tales songs are so catchy that if you watch them enough in the car & you listen for it, you just may hear Andy singing along to the songs. OK, you don’t have to listen THAT hard for it. Like I said, the songs are catchy.
  5. Nicholas, like his mama goes from happy-go-lucky to hangry in 0.2 seconds. There’s no warning (poor Andy). And, it’s usually in the middle of nowhere. So Andy can do nothing but listen to both of whine (& one of us ask for wine) about it until we reach the next town.

All in all, we made it to Pennsylvania where Nicholas was loved on by more friends & family than I can count. We were thankful for the trip. We left Pennsylvania with full hearts (& bellies) and sleepy heads. It was oh.so worth it.

 

We Are Out Of ICU

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As of Sunday evening, Nicholas was downgraded from a level 3 baby (intensive care unit) to a level 2 baby (progressive care unit). We are out of ICU!

We are still waiting on a space to become available in the progressive care unit so our physical location hasn’t changed yet but, we are happy to report that we no longer need the care and attention classified for ICU babies (and we even got a new ‘big boy bed’ to go along with our new status). We are beginning to talk more frequently about discharge with the nursing team and preparing for Nicholas to come home. We still believe it will be a few weeks before we are discharged from Golisano Children’s Hospital but we are over the moon excited to have made it this far!

(more to come in our weekly update on Sunday).

Week 8 – Bye, Bye CPAP. Hello, Fresh Air.

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Nicholas started this week on the lowest level allowable on the CPAP machine. He was breathing room air and only receiving pressure support to his lungs from the CPAP machine (and the lowest possible pressure support). He was breathing well on his own – so well that on Sunday we started to hear mumblings from the respiratory team that he might be ready to come off the CPAP machine soon. (“Soon” is a relative term I have come to learn during our time so far in the NICU).

Fortunately for us, “soon” was Monday morning. Dr. Faisal moved Nicholas off of the CPAP machine and onto a Vapo-Therm machine to help continue to stairstep him down off oxygen pressure support. This machine gives light  “open loop” support to his lungs through only 1 nostril and is intended to be the last step before all oxygen support is removed and Nicholas is expected to breathe all on his own (all of the other oscillators, ventilators, and CPAP machines have provided “closed-loop” support meaning the pressure was delivered through a nasal canula that sat in both of his nostrils). Vapo-Therm machines can be set to a variety of pressures based on the baby’s needs. We started the week at +3 liters per minute of pressure (middle of the range for the machine) and our goal was to get to +1 before he would be removed from the machine.

Andy & I were anxious to start moving down on pressure on the Vapo-Therm almost immediately. That may sound impatient (believe me, we have our “when is this all going to be over?!” days where impatience permeates all we do) but we knew that once Nicholas was at +2 we could begin to try to bottle feed him. I longed for the day to be able to hold him and feed him. And now, that day was so close I could taste it and I wanted it. So did Andy. The doctors and nursing staff made it very clear that once Nicholas was at +2 on the Vapo-Therm the last big step for us to master in order to go home was to have Nicholas bottle feed. We were now starting to openly talk about what has been big the elephant in the room for us for weeks now – “When do we get to go home? What do we have to do?”. I haven’t asked those questions out loud since Nicholas was 1st born – mostly because I was fairly certain I wouldn’t like the answer. But now, it was starting to become common conversation for everyone on Nicholas’ care team.

Nicholas stayed on +3 until Thanksgiving when Dr. Faisal gave orders to move him to +2. Andy and I were so excited because Dr. Faisal also gave orders to start bottle feeding him within 24 hours. Happy Thanksgiving to us (or so we thought). Mary, our nurse on duty on Thanksgiving,  moved him to +2 per the doctors orders and didn’t think he “liked it” so she moved him back to +3. When we arrived at the hospital to find this Andy & I were both a bit confused and frustrated. We felt like “didn’t like it” was a relative term and we wanted to see how he handled the +2 support for ourselves. She was resistant to change his pressure during the afternoon but suggested we speak with the nursing team that evening to wean him down.

So, we did. Mary may have underestimated Nicholas’ parents on this one. Between Andy’s analytical questions to the nursing team about standards for when and why a baby’s pressure support changes and his unwillingness to take “didn’t like it” as sound medical advice combined with my “We are so close, do not take this from me. Have I told you I haven’t seen my home in 2.5 months? I don’t remember what my house looks like. Oh, and I have 3 dogs which I haven’t seen. I am ready to get out of here. Do not take this from me. Move him back and lets see what he can do. Prove us wrong. I know my child is strong. ” which I tried to make come out as nicely as possible but probably sounded  more like “Put him back on +2 now. Do not question me – I am the mom. Do it now. Have you done it yet? DO. IT. NOW.” we wore the evening nursing team down. At 5 AM he was down on +2 and was doing just fine (yes, we knew it was 5 AM because we called about every 2-3 hours to “check-in” – which is a nice way of me saying we called and said “Have you done it? DO. IT. NOW.”). Andy and I make no apologies for being so pushy on this issue – we knew how important it was to continue to progress Nicholas’ care.

With +2 support, Friday brought our 1st bottle feeding trial run with Nicholas. The nursing team told us to not expect much from him and if he could eat 5 cc within the allotted 30 minute window he would be doing good. Well, he ate 12 cc within 20 minutes before he got tired (or milk drunk as some say) and passed out, bottle in mouth, in my arms. So, the next day Dr. Faisal agreed to upping his bottle feeds to 2 times a day. Saturday, Nicholas ate 17 cc at both feedings. He was well on his way to following in the Moore & Szapacs men’s footsteps of solid eaters.

Another big victory for us this week was that we were able to move out of the isolette. Nicholas had been in an isolette since he was born as it was the optimal bed for him since it had noise barriers (to reduce stress) and could control the temperature around him so he didn’t work too hard to keep himself warm. Now that he weighed 4 pound 5 ounces, was wearing clothes all the time, and was proving he could hold his temperature just fine in the isolette it was time to move him out into the world. Friday night, he moved into a Caleo bed which starts out as an enclosed bed but is convertible once the baby adjusts to room air. By Saturday morning, Nicholas went convertible and was in an open-air crib and doing just fine holding his temperature and adjusting to sleeping and waking to the sounds around him.

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Nicholas’ isolette where he spent the 1st 8 weeks.

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Nicholas’ new convertible Caleo bed.

Week 6 – Weight Gains & More on The Art of Trying to Be Patient

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3 pounds. 3 whole glorious, wonderful pounds. Nicholas hit another Szapacs family set milestone when he weighed in Sunday evening. We were ecstatic (and, of course Andy & I celebrated with a fist bump!)

Nicholas got his 1st out of state visitor this week – Aunt Carmen (my step-sister) came into town for an all too brief but appreciated visit. Aunt Carmen arrived Saturday from NC and spent a day and a half with us visiting Nicholas in the hospital (and soaking in some SW Florida sun!). Thanks for coming, Carmen!

On Sunday, Nicholas was still breathing on his own with only pressure support from the CPAP machine. His oxygen levels and heart rate were fine but his respiratory rates were high. And when I say “high” I mean “holy cow, that’s high.”. His respiratory rate should have been no more than 70 breaths per minute (bpm) but he was at 140 bpm at points throughout the day. As Andy and I sat with him and watched him breathing like someone who couldn’t catch their breath after running a marathon, we grew concerned.

After talking with the nurses about reasons for his high rates they explained that after he had been breathing on his own for 4 days he might be “getting stressed and tired” and diagnosed him with tachypnea. Its pronounced “ta-kip-ne-ah” and simply means someone who is a quick, shallow breather. (On a side note, the vast vocabulary I have picked up since being in the NICU should win me a spot in the scrabble world championships.)

One of the ways to help combat Nicholas’ tachypnea would be to increase the oxygen pressure on the CPAP machine and, if that didn’t work, we would have to consider the option of going back on the NAVA ventilator (which we didn’t want – we’re trying to remove tubes not put more in!)

All of this tachypnea chatter got me thinking. I remembered a day a few weeks back when he was having trouble breathing. The respiratory therapists thought having me hold him may help with his breathing. I held him for 2 hours and his rates did normalize. I didn’t want to hold him this time because his temperature was low (another sign of stress) so instead, I chose to read to him to see if it would help. I sat and read “Winnie The Pooh” for over an hour. Nicholas was alert the entire time looking around, smiling, and holding my hand while we read. As we continued to read, his respiratory rate came down within the “normal” range and, I’m amazed to say, he stayed within normal range all night long.

Over the next few days, we patiently waited tried to be patient as we watched his respiratory rate slowly even out. We pulled out our old mantra of “deep breaths, buddy, deep breaths” and sat with him day in and day out doing everything we could to help him breathe better. We continued to work with the team of occupational therapists learning new techniques to help with diaphragm muscle recall, and even sat by his bed and over exaggerated our own breathing cycles for him (a lot of deep breaths make for lightheaded parents!).

By Friday, he was beginning to show signs of progress and looking much more confident breathing. He was also showing a bit more weight gain- by Saturday night he weighed 3 pounds 6 ounces! We know that with every ounce gained more and more of his breathing will become easier and more natural so we are thankful for every ounce.

On Thursday, Nicholas got a sweet surprise. My cousin Jordan flew down to spend 4 days with us. And, let me tell you what a God-send she was for us (especially me!). I had missed her greatly since being in FL and having her here provided another piece of home that I miss.

She spent much of her time here with us traveling back and forth to the Children’s hospital and hanging with us for hours on end in the NICU without so much of a “Gee, isn’t there anything else to do in Fort Myers besides tour the NICU?” ever being uttered.

She also provided a nice distraction from our routine – she was the reason I took my first boat ride since being down here (with my own health issues and spending time with Nicholas I haven’t had much desire or energy to do much else – especially go out on the boat). We spent one morning on the boat as a family sightseeing the area from the water, putted around in the Gulf Of Mexico, and even got up close and personal with a pod of dolphins. It was a good morning together as a family. Thank you for coming, Jordan- we all love you very very much!

1 month old

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1 month old. Wow. It has flown by. I’d like life to slow down (but our time in the NICU could hurry up a bit!).

This past month hasn’t been easy. Not at all. It has been full of long days that leave Andy & I exhausted from the emotional roller coaster. We have laughed. We have cried. We have fist-bumped. We have prayed.

We are thankful. All 3 of us have come a long way in the past month and are stronger for it. Nicholas, although still small, grows more & more fierce everyday. As “Uncle Parker” put it one day: “This kid is a Moore. He will kick and punch and claw his way out. He will not be beaten.”.

We still have a journey in front of us but today, we celebrate just being “1”. We sang the happy birthday song more times than I care to admit. We read and we cuddled. It was a good day.

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