This is it

The last two days are exactly why I started this blog. So here I am, Patrick is finally napping and I am at my computer to vent, or share, or commiserate. If I lack all logical grammar and thinking you’ll have to forgive me!!

Yesterday, Wednesday, Patrick had a regularly scheduled appointment to follow up with ENT. He had tubes placed in his ears at the time of his lip and nose repair to help drain excess fluid he had in his ears. We had an appointment to follow up and make sure everything was looking good.

IMG_5267
Bracing ourselves. Note my shirt #goforit

On Monday I had called to follow up with his dentist to see when they wanted to see us on Tuesday. We had an appointment with them the week before to get mold for an obturator. (A device that is placed in the roof of his mouth that helps create a hard surface. It looks like a pair of dentures without the teeth.) When we had gotten that mold last week  we were told he was going to need to get a second mold done since his mouth had grown more than the dentist had expected. We were supposed to be seen this Tuesday, but the office hadn’t called to give us a time. When I called on Monday they informed me he didn’t have appointments available for Tuesday. SIGH. We really needed our obturator back. (We had to be without the obturator for at least 4 weeks post-surgery.)

 

IMG_1553
Patrick’s 1st and 2nd obturator side by side. (Today he received his 3rd!)

The dentist that takes care of Patrick is one of my favorite providers we have, and that is a tall order to fill. He is sweet and super caring, he has been going above and beyond from day 1. So, after I hang up with the office, he texts me! He is so sorry about Tuesday- his office manager has left for another job opportunity and not been replaced yet, he is been super busy and now without his right hand. BUT he can squeeze us in Wednesday at 11am.

This is a horrible time for us, but knowing his schedule and that we really need this done, we take it!

Just break this down with me. The team that takes care of Patrick is a division of Stony Brook Hospital here in Long Island. They all have offices either across from the hospital, or about 5-10 minutes east of the hospital. We live exactly 27 minutes from the hospital without traffic, and 20 minutes from the main offices. We see Dentistry at 11, and ENT (10 minutes away) at 1. Our appointment with dental is typically about 30-40 minutes. YIKES!

End result? We spent the day at Stony Brook.

We left our house at 10:30, saw dentistry, Dr. Larsen is the best, but getting a mold of your mouth is annoying for anyone, and a bit traumatic for babies. Patrick gags and screams, and gags more, while they shove a tray full of clay into his mouth until it hardens and then they pull it out ever so gently so as not to disrupt the perfect mold of his little mouth. Keep in mind this time (for the second time) Patrick is 5 weeks post op from a major surgery on his lip. I imagine it’s not the most comfortable for him.

We leave dentistry around noon, with the plan to return tomorrow to pick up our new obturator that Dr. Larsen is making overnight for us! (Did I mention how much we love him?) Patrick is exhausted and hungry! I feed him in the back of my car, and since his reflux has really been acting up, he is supposed to sit upright for 30 minutes after eating. I don’t feel like we really have 30 minutes to sit, but we do for about 15. I get him back into his seat, much to his dis-like and we start our short drive to see ENT.

IMG_5281
Always bring friends, they make everything better!

Patrick has now been awake since 9am and is extra tired from the fight getting his mold. He falls asleep in about 2 minutes. I drive around as long as I can so he can get a few minutes of sleep. Unfortunately as soon as I get him out of the car he will wake up. He sleeps a total of about 15 minutes before we have to walk in to our next appointment.

The doctor is running late but then we’re seen – drama free here! And we get ourselves back in the car around 2pm. He falls asleep again about 10 minutes into our 20 minute drive, giving him another 10 minute mini nap. We get home, he is up and about, and starving again.

Days like yesterday are so difficult for us, and impossible for me emotionally and mentally. I feel extreme guilt for exposing him to a schedule like that. I work so hard to keep only 1 appointment per day, but some weeks, it just isn’t possible. We need to see these doctors and they have very full schedules. When they take the mold in his mouth and I hold his arms down, I could cry that he has to experience this. I keep thinking it will get easier, but it just doesn’t

I should say, he is a such a trooper! I mean, he is exhausted and for all intents and purposes, sleep deprived, but when the pretty brunette nurse walks in the room, he goes full flirt mode, giving those dreamy shy eyes and heart melting smile.  He knows how cute he is, and plays it up!

We both got home yesterday completely exhausted. He finally went down for a nap around 4:30, and I finally look around my house to the mess I left behind in my rush to get out this morning, I have laundry in the dryer that really needs to be folded. It’s 4:30, and should really figure out what we’re having for dinner. Instead I called Shaun and got him to bring home tacos. I mean I deserved it!! I leave the laundry, and try to at least straighten up the kitchen.

IMG_5340
Dr. Larsen! He even takes selfies with us !

Unfortunately a sleep deprived day where our routine is really off also means a horrible night of sleep.  So today, when we head back to the dentist for the final fitting of our new obturator, I know it’s not quite time to get back on track. We had another mini nap on the way home, and fought hard to get back down for a much needed nap.

I have to force myself at the end of stretches like these to find a way, somehow to see the light here. So at the end of this rant let me say this: Patrick’s new obturator fits beautifully. He ate like a champ when we got home and I am feeling incredibly hopeful that it’s going to make a difference for us. He is napping now, which leaves me with hope for a happy afternoon, and very best of all- tomorrow we are appointment free!! Can anyone say pajama day?!?!

Published by mamahouli

I'm a new mom of a beautiful baby boy, living in Long Island, NY. I was sure before I became pregnant that I knew exactly what this "mom life" would be like. I knew nothing. I'm ready to get real about what it's like being a mom, having a child born with a cleft lip and palate, and just trying to figure it all out.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: