Charlie’s Paige

03/30/2023

Happy due date, sweet baby girl.

It’s really difficult to grasp that today is your due date. I feel like I’ve lived 50 lives in the last 20 days. I can’t fathom how you were here and now you’re not and how we’ve lived in Boston and gone back home and hosted services and tried to put it back together without you and yet you still shouldn’t even ‘be here’ yet.

Parker still thinks you’re in the hospital. She asks me every morning to spell everyone’s names and then says ‘Charlie is at the hospital so the doctors can fix her heart. Do you think we should go get her soon?’ I can’t bring myself to say anything different, so I just say yes, I hope so.

I am having a hard time. I’d be lying if I said we were ‘doing it’. I’m not doing it well. I’m not doing it much at all, honestly. Your daddy, though. He’s doing it. He has picked me up and put me back together and will literally do anything for us. You should be so, so proud of him. He’s surviving this and he’s making sure I do too, because we have a really beautiful family.

Keep smirking your silly little smirk. In the worst of times, I can’t look at your sweet smirky face and not smile.

I love you, Charlie bear.

03/21/2023

https://sullivanfuneralhome.net/tribute/details/3639/Charlotte-Charlie-Lafferty/obituary.html -start

With great sadness, we announce the passing of Charlotte ‘Charlie’ Paige Lafferty. Charlie was born March 10, 2023, at 12:53am, 5 pounds and 4 ounces. She passed away unexpectedly at the age of 8 days on March 18, 2023, at 3:00pm. She is the beautiful and beloved daughter of Ryan and Nicole Laff...

03/20/2023

Friends and Family,

We will be hosting a celebration of Charlie Paige this Saturday, March 25, from 11am to 1pm at Sterling Street Brewery, 175 Sterling Street, Clinton.

All are welcome. We hope to see you there. Our girls will be there, so please do include your kids if you would like.

Burial services will be held privately on Sunday.

🤍

03/19/2023

Have never been treated worse in my entire life. The staff and management at this hotel should be absolutely ashamed of themselves. Find somewhere else to stay… you will thank me later.

03/19/2023

Hey friends.

This is the update no one ever wanted to post.

We had a great day yesterday. We talked extubation, we talked long term, all the things.

Around 1am, out of nowhere, Charlie bear coded. Her pressures started to drop, followed by her heart rate.

They called code blue. The whole unit responded. They had to open her chest and put her on Ecmo. We were sequestered to a little conference room while they worked on her. (Want to talk about how Valet lost our car after she coded, told us to ’f ourselves and hope your baby dies’ - because that was fun, before walking over a mile to get to the hospital at 2am because the car was ’missing’)

Ultimately, Charlie girl was just too teeny to sustain the work they did on her last night. It was too much. We pray that Sloane was there to meet her and she didn’t suffer at all. She will never, ever be alone. She was never, ever alone.

The Boston Children’s team - has truly blown us away. We have made family members in mere hours. They will never, ever understand the impact they have had on us. We will be forever indebted to the nurses that watched over our girl.

I held her in my arms as she was greeted by our Sloane girl, and she will never, ever, be alone.

Pray for our babies, because they are going to be utterly destroyed. We love you all.

03/17/2023

Miss Char wishes everyone a happy and prosperous St. Patrick’s Day! ☘️

03/17/2023

Happy Thursday from Charlie Paige 🤍

In just a few hours, miss Char will be a whole WEEK old. We were just getting admitted at this time last week to officially start the induction process to meet our little peanut.

Today was a long day of waiting. ‘Hurry up and wait’, they keep saying. Seems it will likely be a theme in our immediate future.

Yesterday, the team all decided that Charlie bear was looking well balanced and we were ready to start thinking about extubating. At the time, she had ‘access points’ through an umbilical cord line, which is good for max 7-10 days, an IV in her head, an arterial line in her hand, a second IV in her other hand and an NG tube in her nose. Before pulling her breathing tube, they wanted to place a PICC line - another access point (in the thigh - can be done in either upper or lower extremities, but in heart babies, they prefer to use the lower as the cardiology team will need the uppers for ‘heart things’) that will be able to remain in place for weeks-to-months. This would replace her umbilical line and head IV.

As per Charlie, she throws a nutty anyone tries to mess with her. Diaper change? Throw down. Fresh sheets? Throw down. Meds? Throw down. True to self, last night, the IV team showed up to prep and sterilize the room to place the PICC, and miss thang started her usual shenanigans. We were asked to leave as they create a sterile environment for the procedure, and told it should take an hour. We headed downstairs to wait. An hour and a half passed, with no word, so I called up. Our nurse picked up the phone laughing. ‘How do you imagine it’s going?’ ’Terrible, obviously.’ ‘They’re wrapping up now to call it a day. Charlie won the battle.’

Today, we knew we had an uphill battle to make it toward trying to extubate. The PICC was necessary - and if they extubated before they placed the line, they would be forced to place the line without any breathing assistance - and given Charlie’s perseverance against being messed with, this was not a risk anyone was comfortable taking. So we hopped in line to get a spot in interventional radiology (IR), where she would be taken downstairs to a room where they could place the PICC with additional intervention available. First she got a spot at 1, then 130, then 230, then 315, then 4. Finally she headed down. It was supposed to take an hour. Yet again, 2 hours goes by. I called up and they were on their way back upstairs, so we headed up to meet them.

Sure as s**t, the bull headed 4 pound infant required not one but TWO doses of paralytic ON TOP of the double dose of morphine AND the extra sedative they gave her. So she is now snoozing comfortably, with her PICC successfully placed in her teeny little thigh, and she will not be alert enough to even consider extubation until atleast tomorrow.

I presume the morning will bring another day of ‘hurry up and wait’-ing.

For tonight, we pray for rest for all of us. After I succumbed to exhaustion last night and committed to a full night of sleep in the hotel without heading into the hospital overnight to pump as we had been doing - the hotel had a fire alarm at 2am and required we all evacuate. We (kids included) reluctantly trudged down the stairs in our underwear and stood outside for 45 minutes, and my mental health is still suffering from it. 😂

This is certainly a wild ride. Hard to believe it’s only been a week. Thank god she’s cute.

03/15/2023

:: checking in with Charlie Paige ::

Miss Charlie girl is keeping us on our toes around here. She wants her presence to be known and while I appreciate her s***k, give it a rest, lady!

Over the last few days, we have worked on weaning her off of some of her medications and reducing the effort that the ventilator is putting in and pressing her to do more of the work herself. She is going through a bit of withdrawal after weaning her morphine and it’s giving her the shakes, which hopefully won’t last too long.

On a non-heart baby front, she’s got a bit of jaundice, not surprisingly, but so far hasn’t needed any phototherapy. She also is presenting with hip dysplasia, which sounds like it is likely related to her spending a majority of the pregnancy breech. We have been wrapping her in a baby potato sack to lift her hips, turning her from side to side and stretching her legs, but we won’t do anything interventional, if it becomes necessary, until she’s quite a bit bigger.

The amount of insight that the doctors here are able to gain from tiny inferences in her monitoring is truly astounding. After her cath procedure, the team started (and still continues to) check her blood pressure at various points on her body - in her arms, upper legs and lower legs. From spotting differences in the upper and lower pressures, they knew that she had developed a blood clot in her vein where the catheter was inserted. She receives aspirin through her NG tube as a blood thinner and on her last leg ultrasound, the clot had completely resolved. They are also able to determine how the left side of her heart is functioning versus the right.

She has been doing a solid job maintaining her pressures and heart rate. She’s currently taking most of her breaths voluntarily, which is a great step toward extubation. She has spells of breathing rapidly, and then getting tired and forgetting to breathe for a second. She really likes to have nurses around so pretty much any time they step out of the room, she’ll set off the monitor - and as soon as they come hustling back in, she goes back to normal.

She receives echocardiograms twice a week and has lots of other testing done on the daily. For now, the ‘plan’ is to work toward extubating, and then focus on eating and maturing her body for ~3-4 weeks before we discuss moving forward with the Stage 1 Norwood surgery. They don’t expect that she’ll gain much weight in that time, if any, but the maturity of her body and organs will hopefully reduce the risks of such a significant procedure.

The big girls have come in to visit several times and are enjoying trying out all of the different sibling activities at the hospital and checking out the local restaurant and DoorDash scene. Yesterday they played a game at the tv studio and were highly amused that I could watch them from the room while they played. They have been loving on Charlie and have surprised us with their comfort level seeing her like this.

03/14/2023

Snow day trivia with the girls! ❄️

03/13/2023

We love you tiny nugget! ❤️