Blog

so, you can hear me. 

Just a quick update on Nicholas’ hearing….

Back in May we discovered Nicholas hemorrhaged his right eardrum. This required surgery to correct the hemorrhage & tubes “installed” to help keep this (& all those nasty ear infections) from happening again. Surgery went fine & our doctor was happy with the results.

Today we had our post-op checkup complete with hearing test to see if there had been any change in his hearing post-surgery.

Nicholas woke up this morning with his new favorite phrase on repeat: “oh, no”. But his interpretation of the phrase is much more dramatic than I can ever begin to describe here. Worse than Scarlett O’Hara on her most dramatic day. His “oh, no”s are long, drawn out, and often accompanied by a melodramatic head to the hand in despair.

So, when he woke up with these words on repeat I was a mixture of hilarious laughter & ‘what does this kid now about this day (a Monday) that I don’t know?’.

But, since we can’t hide behind what-ifs & what-about’s off we went about our day.

Once we arrived at the doctor’s office & made it through the parking garage, across the lot, up the elevator, & into the waiting room (why aren’t medical parks less complicated to maneuver?) Nicholas was greeted by a nurse. His reply? “OOOOOOOHHHHH, NO!”. The whole office laughed. He stared at them confused – how could such a dramatic phrase elicit such laughter?!

Back in the hearing booth, we listened as sounds & voices came from all angles. (Those hearing booths can be a bit creepy with the dark walls, random voices, & the occasional flashing light).

After the test we headed back into the waiting room. Again. Then, after a 20 minute wait we were taken back to a room to wait for the doctor. And there we waited. And waited. And waited. We’d been there for over an hour with no sign of the doctor. And let’s just say it wasn’t enjoyable. I was running low on goldfish. We only had water, not “wa-wa” (which depending on the day is a toss up between either milk or apple juice – not water). We had read all our books. There was no music. In short: “misery” is being put in a quiet room with a toddler only to be surrounded by medical instruments & sharp objects said toddler is not supposed to touch. I performed my own interpretation of “oh,no!” About 8,457,362,199 times. Nicholas needed “wa-wa” & mama needed wine.

The doctor finally did come to see us  (I was beginning to think we’d been forgotten). Nicholas checked out great. His ear is healing well & his hearing is well within “normal” range. We were discharged with no medicines and a note to come back in 6 more months for a check up.

Now, Nicholas doesn’t get the excuse of hearing troubles anymore. He can hear me. Just fine. Now I know when he doesn’t “hear” me it just means he doesn’t WANT to hear me. Selective hearing was my specialty growing up so I can see him coming from a mile away. His father still performs daily selective hearing exercises around me (“oh, you meant do that now now. Sorry I didn’t hear you.”) so at least from “hear” on out Nicholas will come by it honestly.

when best friends have babies.

Note: This isn’t a traditional “love note” about my Nicholas. But since life isn’t always about “you”, here goes……

Today my best friend had a baby. With his gorgeous, wonderful wife. & I simply could not be an ounce happier for them than I already am.

Michael & I have been best friends chosen family longer than either of us would care to admit. His parents, Kay & Charlie, have become 2nd parents to me (& now Andy & Nicholas). From today onward they will be called Mimi & Papi in our home. They love us as their own. They will never ever know how grateful we are for them in our lives.

When we were in high school, Michael would often come over to my house. So much so my mama would keep string cheese in the fridge for him. There were days she’d hear the front door open, followed by footsteps to the kitchen. She’d think for a moment it was one of us only to find Michael standing in the kitchen with the fridge door open & me nowhere to be found. That’s just the kind of family we are – we’re comfortable enough to know the door is always open regardless of who may be home. (There may also have been a cookie jar at Michael’s house that a certain mom Mimi kept cookies in for yours truly but I digress).

I’ll never forget when Michael met his wife, Annie. He called me & told me about how he met her & how he wanted to get to know her more. There was something different in his voice as he recounted the story to me. A different tone. A different rhythm. It sounded as if his heart had finally found what it’d been searching for & it was happy it was home.

I prayed for someone like Annie for Michael for a long long time. I watched as others came & went. I listened to him during times of transition. I laughed sometimes when life would throw him a curve ball (or was it a correction?) and he would get caught off balance from his oh.so.well laid plans. And then, I watched (from afar as distance often demands) as Michael fell in love with Annie.

Annie is strong. She is calm. She is patient. She is practical (hallelujah!). She is reverent. She centers Michael. She grounds him. She is everything I ever hoped for for Michael. When they got married I told Mimi “we don’t have to worry about him with her. He’ll be just fine.” I just love it when I am right.

Annie & I suffered similar losses. We walked similar paths as we processed & I learned a lot about her during those times. Long story short: she is a rock. Together the 2 of them are nothing short of amazing.

And today, as icing on my best friend cake, Michael & Annie welcomed a son into the world. He is handsome. And he, just like his parents, will have an amazing love story.

Sweet boy, you always have a room in our hearts. And a room in our home. And a buddy named Nicholas to do life with. We are thrilled to be your “chosen” aunt & uncle. Know we’re here when you need us. (& when you get older, I’ll tell you stories about your Dad that might just come in handy one day). Love you.

 

 

on ear surgeries & finding our LOUD

pre-op with our new comfort toy from the surgery team.

Nicholas’ ear surgery went just fine.

Surgery day was an early morning for us – we were up & out of the house by 5:30 AM and on our way. Andy was driving & it was raining & neither one of us had had enough coffee. We may have gone to the wrong surgical check-in counter. It wasn’t THAT big of a deal but someone (who resembles a bearded 6′ 2″ man in my life) may have thrown a small hissy fit about it in the parking lot since we had to get back in the car (& carseat) to go around the building to the right entrance. Me telling him “if this is the worst thing that happens today, we’re in good shape”, wasn’t especially helpful for said bearded man in full hissy fit mode to hear before 6 AM & 1 full cup of coffee. But alas, it was the truth.

After we got settled & checked in, we began the “hurry up & wait” ritual that is all too common with many of Nicholas’ medical appointments. He did fine with the wait – by this time of the morning he was awake and wanted to say “Hello” to all of his new “friends” (note: strangers we do not know) sitting in the waiting room. My child is fearless when it comes to what some might think are awkward social situations.

The surgery went just fine. They were able to repair the hemorrhage without much trouble & inserted tubes into both of his ears to hopefully curb any future ear troubles. We’re on some pretty heavy steroids for a few days to help avoid any infection. And as for his hearing, we’ll go back in 1 month for a follow up full hearing test to see if this surgery has helped his hearing. The good news here is that the damage right now to his hearing is pretty minimal. Before we knew about his ear drum issues,  I chalked much of his hearing issues up to selective hearing (a trait he gets from his father & not me-never me). He can hear most of what we say  (except for the occasional “selective hearing-itis” he contracts) & responds well. He is proficient in sign language now too which has helped us communicate. The doctors do think any improvement in hearing that may come from this might help his speech progress.

Speaking of speech, Andy & I sat at dinner with Nicholas 1 day after his surgery & started to think about all of the “words” Nicholas knows. We came up with 23. He can sign all  23 & say about 4 pretty clearly. The word “mama” is still used as a substitute for “I’m hungry, feed me”, “Read me this book”, “Can I have this?”, “Why can’t I have this?!”, & the all encompassing “If I can’t have this I’m going to quickly start running away to find dada & ask him.”. Heaven help us.

Its been about  5 days since surgery now. In 5 days he has found several new words & a whole new range of his voice – LOUD. Not just “Let’s use our inside voices please” loud. I mean LOUD LOUD LOUD. As in “Oh my soul you are hurting my ear drums, kiddo” loud. And, a friend at school taught him & some other classmates a new word: “MINE”.

Loud voice+”MINE!”+confident toddler makes the perfect storm of hilarity in our house.  We’ve had the following conversations this week at meal time more time than I’d like to admit:

N holds up sippy cup as if it were a sacrament being offered to the GODS of mealtime.

N:MINE! MINE mama!

Me: Yes, buddy. That is your cup. Please put it down & eat your dinner.

N hold cup in my direction so I can clearly see it. 

N:MINE!

Me: Yes, it is yours. Put it down please & eat.

N: MIIIIIIIIIIIINNNNNNNNEEEE.

Andy (finally chiming in): It will be MINE in 30 seconds if you don’t put it down & eat.

N puts cup down & in a low voice says “mine”.

Point made kiddo. Point made.

Thankfully, Nicholas has also learned the sign for “quiet” which he finds funny. But he responds to it. So, I’ll take that as a win.

 

He is starting to be much more attentive to people when they talk. Just the other day  I asked “Did you have fun playing with Monty?” (a friend at school that he toddles around with a lot). Nicholas stopped what he was doing, walked clear across the kitchen to me and stood there for 30 seconds just “talking” to me about Monty. Complete with hand gestures. I couldn’t understand much of it but he was purposeful, intent, and excited to tell me the story. 2 weeks before surgery he wouldn’t have done this. He would’ve responded with “mama” and moved on.

It’s exciting to watch this new phase unfold. It’s also funny to be a part of – especially when you get to watch your husband (known for his colorful language) have to learn to self-censor himself.

More to come I’m sure. Here’s to unchartered LOUD waters & the hope that we find the humor in what will surely be a few LOUD words in awkward public social situations. Jesus give me grace (& an abundance of patience).

I am Nicholas’ mama….

I am Nicholas’ mama. & I am wholly in love with that title. I am also….. wholly exhausted. And it is the best feeling in the whole wide open world. 

Being Nicholas’ mama is messy. Last night we ate “crispy” porkchops. “Crispy” is my euphemism for “the grilled pork chops caught fire on the grill and somehow Andy was nowhere to be found (he was,surprise!, in the garage) and I had to pick between making sure N didn’t go swimming in the dogs water bowl and letting the chops go “crispy” so alas, we had crispy pork chops. Once dinner was over, and we were settling down for a bit Andy said “honey go change your shirt, you have sweet potatoes on your back”. And, sure enough I did. I had a toddler handprint of sweet potatoes on my shoulder. 

I spend most of my days in the irony of getting messy to help my child who doesn’t like to be messy. He loves a baby wipe. Just the other day he used up a whole tub of baby wipes on his hands & face in under 2 minutes. (Mess for me; clean happy fun time for Nicholas). He loves to wash his hands. Over and over and over again. He loves the soap and the water. I look like I’ve had a shower after we wash our hands because he’s had so much fun getting clean in the sink. But by golly, we have clean hands. 

Being Nicholas’ mama is hilarious. Probably for both Nicholas and me. He has his great grandmother’s famous side eye. When he uses it on you, you get chills & think “Bea Parker, is that you in there?”. He has uncanny timing with his (often) dry humor. He will crack a joke with his sign language or the few words he knows and you will go from angry/frustrated/overwhelmed to laughing so hard your belly hurts. 

Being mama is humbling. Every single day. Nicholas is a truth telling mirror for me. Who knew I wag my index finger when saying “NO”?  Well, maybe you did but I never did until one night at dinner when I said “NO” (complete with index finger) and Nicholas just stared back at me in silence. Then his eyes lit up, he put up his hand and with a big smile on his face said “NUH” complete with his own impersonation of said index finger. Andy erupted in laughter. I looked at him and asked “do I do that often?” to which Andy responded “All the time. All the time.”. 

So, on this Mother’s Day I’d like to pronounce that I am Nicholas’ mama. & I am in love with that. It’s an honor. It’s a privilege. It’s messy. It’s humbling.  It’s exhausting.  We have frequent “we deserve our own reality show moments”.But it is oh so full of love & laughter that I wouldn’t change it for the world. 

Today, I’ll get my people up in a few moments and get them ready for church. I asked Andy & Nicholas not to get me presents (I think Andy thought “is this a trick???” It’s not). Just promise me there will be brunch after church that I don’t have to make or clean up. And wine. Emphasis on the wine. 

Happy Mother’s Day. 

who knew you could hemorrhage an eardrum? 

Nicholas has had a tough time when it comes to ear infections. We have had 7 in a year. 7. They’ve become so frequent I can spot them within a few hours of coming on. Since Nicholas was a micro-preemie who had lots of respiratory troubles in his first few months & then had RSV at 9 months, it’s normal for him to be so good at getting ear infections. 

Just last Sunday we picked him up from his Sunday school class after church. He was hot. 102.5 to be exact. And he didn’t want to eat anything for lunch. I looked at Andy and said “I think we have an ear infection- I’ll call the doctor tomorrow”. Andys response “Oh. Bad time to mention I have to leave tomorrow, not Wednesday, for Maine for business, huh?” (True story). 
So, on Monday off we went to the doctor for the normal “yep that’s an ear infection all right” appointment. We got our prescriptions and headed for the pharmacy & then home. 

When Nicholas has an ear infection he is happy & playful.  He’s not clingy or fussy. In fact you wouldn’t know unless you took his fever or tried to feed himself & he used his “NO” repeatedly that he’s sick. 

So a day of antibiotics in and no fever, off we went to school the next day. (Remember, single parent here this week). Tuesday he was better. Wednesday he was eating, had no fever, but looked miserable. By Wednesday  afternoon the fever was back. So, Thursday back to the doctor we went. The infection had spread to both ears, and the bacterial infection was now in his eyes. We had a round of antibiotic shots (which are awful to watch, by the way) and came home. And poor thing slept. For 6 hours. Through lunch. 

Andy came home late Thursday where with all the love in my heart I said “I’ve missed you. And I love you. But it’s your shift now for a bit. I need some wine.”.

We had a follow up appointment Friday for more shots & had another “I want to sleep not eat” day. 

By Sunday he was better. Much better. But at the doctors’ request the ENT had agreed to see us. So off we went this week. We thought we’d hear “he needs ear tubes”. We did not think we’d hear “he has hemorrhaged his right ear drum and we need to fix that”. The hemorrhage most likely happened during this last fury of ear infections. Since it didn’t rupture (which would be worse & we would’ve seen ourselves) we aren’t really sure when it happened: this ear infection or the one 2 weeks ago. 

So, Nicholas will have surgery. In the next week or so to fix the hemorrhage and place tubes in his ears to hopefully stave off future ear infections. It’s a minimally invasive procedure & very quick. His hearing in his right ear has been compromised a bit due to the hemorrhage and the doctors think that correcting the hemorrhage and tubes will fix the issues on their own. (He can hear voices but some high and low tones he doesn’t respond to). But, we’ll have to wait and see. 

More to come. 

“I not no”.

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

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.

 

happy Easter! 

a very happy Easter, y’all! We spent the weekend in Pennsylvania with family. It was a great, fast paced, exciting day for us all. (More to come on the travels we’ve been on this week!). But, it’s safe to us our hearts (& bellies) are full and our heads are sleepy.

Happy Easter! Here’s hoping everyone found time to celebrate the gift we’ve been given today. 

   
   

life these days. 

Life these days is pretty….well, “normal”. I’m not sure what “normal” looks for other families but for us it looks like this:
4:30 am wake up calls. It’s early. Oh.so.early. But if I don’t get going that early I can’t get myself together before Andy & Nicholas need me when they wake.

 I recently started reading a new book & the writer equates mommy-hood to learning to walk on a balance beam. You have to decide what is going to live on the beam with you & what isn’t. What lives on the beam for me? Hot, homemade breakfasts with my people every.single.day. Hence, the 430 am start times: it means we get to eat together before the day starts. Sometimes, when the stars align, and Nicholas sleeps a bit late, Andy & I get to have coffee together. No distractions. No noise. Just us. It’s pretty great. 

Nicholas is growing by leaps & bounds. He’s over 30″ tall and has surpassed 20 pounds. He is going to be tall like his daddy (& is proving to have his metabolism too- he eats all.day.long). 

He is thriving in his new classroom. The teacher says he likes to be “involved” in lots of things & is often “curious”. This I’m pretty sure is a nice way to say he’s nosy & a bit bossy- which were euphemisms used by his mamas teacher many moons ago. (He comes by it honestly).

People often ask “what words is saying now?”. He’s not, really. He likes to say “mama” but it’s usually in reference to food. When he’s  hungry he says “mama mama mama” over & over again as he walks to the kitchen. 

He does sign. A lot. He’s better at it than us so sometimes we find ourselves looking in our sign dictionary or asking each other “what do you think that means?”. He signs for “more” (food), “please” (food), “milk”, & “banana” (food), & “sit down”.

He loves to smile (at himself in the mirror) & fist bump people. He likes exploring everything & everywhere; especially places he shouldn’t be. Those are his favorite – places & things he shouldn’t be exploring. And chances are, if you sit down he will bring you a book & ask you to read it. 

He is mesmerized by how things go together & work. He takes his toys apart & tries (often successfully) to put them back together. This weekend he discovered how fun a salad spinner is & played with it for 2 days straight. 

He also knows how to operate the TV (no, I don’t  sit him infront of the tv for extended periods of time). He knows how to access Netflix on our smart tv & will turn it on & “ask” through a series of signs & points to turn on either Curious George or VeggieTales.

A few weeks ago, he started swim lessons. We opted for private swim lessons where they focus more on water safety than they do “blow bubbles with mommy now!”. Neither Andy or I are in the pool with him. It’s him, the swim instructor, & one other boy. They teach them not to be afraid of the water, of splashing, and by the 2nd class had him comfortable going under water & even holding onto the side on his own. He seems happy too, which is an added bonus! 

So that’s our normal. Normal toddler-hood filled days that turn into early evenings before we get up & do it all over again.

We do have some travel coming up in the next few weeks which is sure to our comfortable “normal” & toss it on its side. More to come on that but I’m sure we’ll deserve our own reality show once it’s over. 

on making love notes

We originally created #LoveNotesforNicholas as a vessel for our friends & family to stay in touch with our NICU journey. After Nicholas graduated from the NICU (because let’s face it: babies don’t just get to leave the NICU – they work harder than most at a chance for life so “graduate” is the only appropriate word), we wanted his love story to be more than just about him. And we didn’t want to ignore our family’s roots, which started delicately growing inside the NICU walls.

IMG_1189
Nicholas in the NICU, October 2014

So, on his 1st birthday we began collecting books & blankets (our “love notes”) for donation to NICU families. On his 1st birthday we collected  165 blankets  & 70 books. As we promised we would, we packed them up, shipped them to Florida & took them to our NICU for the families there.

My hope is that they’ve all made it home with other NICU graduates.

Truth be told, the whole process of collecting, sorting, & delivering books & blankets has been nothing short of cathartic. So much so that I’m still not done with the process. I’m not over ityet & I probably won’t ever be. This one thing I ain’t letting go of anytime soon – and I’m OK with that.

A few weeks ago I started the next phase of love notes: this time with my own hands. I’m channeling the McIntosh women in my family (namely my grandmother & great-grandmother) who crocheted to now crochet baby blankets for NICU families. (I hope my work makes them proud.)

In the past week we’ve been able to give love note blankets to 2 NICU families: 1 family I know & have written about here & 1 family whom I’ve never met but feel connected to since both our pregnancies came to a premature end due to HELLP syndrome.

We’re committed to more. Reaching more families. Giving more. Praying more. Loving more through what we know are vital items when you’re apart from your child in these often dire circumstances.

While we can’t offer the promise of happy endings, we can offer warmth through blankets, bonding through story times, & the knowledge that there are parents who have sat by those same incubators & prayed until they ran out of words, that now pray for you & your child every day.We hope that these blankets & books give comfort when needed & are a reminder that love is abundant – even in the smallest packages.

I’ve got blankets ready & more in progress. Do you know someone who is learning about life in the NICU walls and could use a love note? If so, I’d like to send them one. I’ve created a tab at the top of the page titled “Need A Love Note?” that will allow you to tell me about the family & how I might be able to send them a love note. That’s all I need. We can take care of the rest.

_______________________

And, I feel like this should go without saying but in today’s “there must be a catch” mentality in the world: there are no strings attached. no shipping fees. no money needs to ever exchange hands. We are doing this  because we can. Its that simple. If the situation ever changes or this gets too big for little ole’ me & my patient husband to handle, we’ll be open about it – in other words, we’ll cross that bridge when we get there.