Patrick’s Story

Site created on February 9, 2024

Welcome to Patrick's CaringBridge website. We are using it to keep family and friends updated in one place! We appreciate your support, words of encouragement, and prayers. 

Newest Update

Journal entry by Emily Hunt

We can hardly believe it, but it's been ONE MONTH of Patrick! I always kind of thought parents were being dramatic, but time truly is a thief. He's growing up way way too fast!

The last few days at home have been so sweet, but also...interesting. 😅 It's a big adjustment to being at home and in some ways we're just now figuring out how to be parents to a newborn! The first time we gave him a bath was traumatic for all involved - but now we're bonafide pros! We know so many of these tasks will get easier as time goes on. If you've ever played Diner Dash, that's what it's felt like 24/7 the last five days.

For example, this is my stream of consciousness from 9AM - 9:15AM

"Okay it's time to get Patrick's four medicines ready - wait! Let's start his bottle warming first. Ooo and I should change his diaper first this time. All right, quarter the aspirin and disolve it in the sterile water, blood pressure medicine, diuretics, vitamin D. Wait the boppy is upstairs! Okay, we've got the boppy and the medicines...oh! the bottle is done - okay Parker you start giving him the bottle. Wait! We forgot a burp cloth - let me run and get that! Stop the bottle, we forgot to give him his medicines first while he's hungry! Okay he finished 38ml of milk by mouth so we need to run the other 22ml through his NG tube. Dangit I forgot to clean the tube from last time, come on past Emily. Okay now it's clean let's add the extra formula to prime the pump and set it for 22ml. That's running now, should take about 15 minutes and then we'll change his diaper again and put him down for a nap if he decides that he wants to sleep. And while he's asleep can..."

And on and on it continues until the three hour cycle is finished and it's starts all over again! It's exhausting but so so rewarding. Even though we have some unique parts of our day to day schedule I'm sure every parent can relate to the never ending to-do list/frantic monologue.

We did get to switch up our schedule and venture out of the house to our very first cardiology appointment! It was a full production, but we made it and we were even able to feed Patrick through his NG tube on-the-go which felt like a huge accomplishment! He has this adorable little backpack that looks like a dog and is specially made for NG tubes. There are so many NG tube accessories that we didn't even know existed that make our life so much easier. We've gotten him cute face tape and a little pocket that attaches to his onesies to hold the end of his tube!

Patrick will continue to have weekly cardiology appointments along with speech, PT, OT, and pediatrician visits throughout the month. Overall though, his doctors think he is doing well! Now it is "wait and see" for his right ventricle to hopefully grow and for him to gain weight!

So many of you have sent us meals, gift cards, or gifts and we are extremely grateful!! Because of you, our fridge is stocked and we have not had to cook meals which is a skill level of parenthood we haven't reached yet 😂 We do have a Meal Train that is linked on our CaringBridge - a couple people have asked us!

All in all, Team Hunt is hanging in there and soaking up every moment with sweet Patrick!

Please pray for Patrick's right ventricle to grow and for him to continue gaining weight! 

Patients and caregivers love hearing from you; add a comment to show your support.
Help Patrick Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Patrick's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top