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).

On Going Home

69 days. 69 days and just like that, we were done. On Friday December 12th, at 7 PM Nicholas was discharged from Golisano Children’s Hopsital. To be honest, part of me wanted a bit more pomp & circumstance than what came with a discharge from the NICU. After all this time in the NICU, to just hear “Okay, bye.” was a bit underwhelming. Don’t get me wrong. I didn’t expect a red carpet rolled out and the nursing staff to be along the carpet throwing flowers at his feet and cheering us as we left but I did hope for a bit more time to say goodbye. A bit more time to process where we had been, what we had been through, and where we were going now.

Andy & I had looked forward to and counted down the minutes to this day – the day we could take Nicholas home. But now that it was here part of me wasn’t ready. I wasn’t ready to say goodbye to the nurses who had become friends. I felt lost knowing I didn’t have to go scrub in for 3 minutes with surgical grade soap each time I wanted to see or hold Nicholas. I wasn’t sure what I was going to do the next morning when I didn’t have to call into the NICU to see how his night had been. I wondered how I would spent the 2 hours I had back in my day now that we didn’t have to drive to and from the NICU.

The last 2 weeks of this journey were the hardest 2 weeks of this entire ordeal. We were so close to coming home we could feel it. Each day that went by and we didn’t come home was heartbreaking. I threw my fair share of temper tantrums in the hospital parking lot with Andy by my side during these 2 weeks. Through tear-streaked cheeks I would say to Andy, “Why Us. What on Earth did we do to deserve this. This is not fair.”. Andy, not a man to wear his heart on his sleeve, would calmly reply “It isn’t supposed to be fair. We were just meant to be stronger people. And we will be.”. True-er words have never been spoken.

Folks told us from the beginning that this would be a journey. And what a journey this has been. I do know, and am thankful, that our journey wasn’t longer and bumpier. It could have been. In my time in the NICU with Nicholas I have seen things I cannot un-see. There are families that aren’t as lucky as we are. It is heartbreaking yet beautiful all at the same time. Some situations were dismal yet love was abundant – proof positive that there can be true love in the chaos.

Some days I have managed the load of this experience better than others. I have laughed at things that aren’t really funny just to feel the release of endorphins. I have lost sleep. I have had little or no appetite. I have cried. And I have sobbed. I have bit my tongue when all I wanted to unleash were a long string obscenities (sometimes I didn’t bite my tongue long enough – I should probably apologize to a few nurses). I have fought the overwhelming urge to scream at the top of my lungs – to just stand up in the chaos of it all and just scream for it to stop – just for a minute – so I could catch my breath.

But, most of all I have prayed. I have prayed until I ran out of words. Whether they be words of thanksgiving, thoughts for others, or asking “Why Us?”, I have prayed.  When I ran out of words, I sat in silent prayer – exhausted from the day and numb from the experience – and rested in the arms of Jesus.

But, here it was – the day we had waited, cried, and prayed for. I was anxious. Anxious to begin our lives with Nicholas outside of the confines of the Hospital. We had spoken of all the things we would do with Nicholas once he came home and now that the day was here it was time to start checking off the bucket list.

As we packed Nicholas’ things up and prepared to leave it was bittersweet to say the least. As I sit here and put these thoughts down, it still is. I will miss the people that saw us through such hell but I will not miss the stress of the days spent by his bedside watching and wondering what tomorrow will bring.

As we left the hospital doors, there was a rush of release for all 3 of us. It was as if we had all been holding our breaths for 69 days and now that we were out, we could breathe again. As we drove to St James City we felt like the family I had longed for since we found out we were pregnant. How we got to that car ride wasn’t what I had planned but, if this journey has taught me nothing else it has taught me that life is a gift that can’t be planned. It can only be embraced – which is exactly what we plan to do with Nicholas for the rest of his life.

I will continue to share our story here as Nicholas’ journey as a successful preemie baby isn’t over – it is just beginning. Join us for this adventure.