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Adventures with Emma, 3549 Chestnut Street, Philadelphia, PA (2026)

05/04/2026

Emmy and I arrived in Philly this evening after a surprisingly enjoyable drive from Buffalo. We chatted and laughed and listened to true crime podcasts (Crime Ju**ie Podcast, I’m looking at you), and the miles flew by. We made it here in record time, and when I walked into the lobby of our home away from home for the last 23 years, one of the hotel staff greeted me and said, “Mrs. McDonald! You’re back!” I don’t know whether or not I should be horrified at the amount of money I’ve given to Sheraton over the past two decades, but either way, I’m wearing that greeting like a badge of honor.

My girl and I hung out on the terrace and ate dinner at the bar, ironically with about 50 people in town for the RIMS Conference, which I’m supposed to be at right now. Instead of representing Gallagher, I’ll be spending my time at CHOP, and I’m ok with that. Emma brought a piece of Philly cheesecake back up to the room with her (club floor, because we’ve spent so many nights here— heart surgery apparently has its privileges), and after scarfing down the entire thing, she smiled and said, “I’ve had such a good day.” So THANK YOU to everyone who checked in, prayed, sent good vibes, sprinkled around some gris gris…because it worked. Even if tomorrow is crappy again, I’m so glad that she had a great day today. At this point, I’ll take what I can get.

I want to give a special thank you to a few people- and they know why. Kareen, Michelle, and Shelby, I love you and appreciate you so much. 🩷

We have a busy day of appointments tomorrow, but I hope to update tomorrow or Tuesday. Again, thank you all so much for your support and concern. I’ll leave you with some pics of dusk on the terrace at our hotel. It was a beautiful place to enjoy the sunset and spend some quiet time with my girl.

05/02/2026

This recovery thing is a lot harder than I thought it would be.

This was Emma's fifth open heart surgery, but she has had many other surgeries and a host of additional procedures that required anesthesia and hospital stays. My girl is a pro, and I'll be honest, I thought I was too. But this time around is making me feel like an amateur at best, and doubting a lot of what I thought I knew.

First let me say that Emma's heart looks amazing. Her final EKG and echocardiogram before discharge were fantastic. We followed up with her local cardiologist this past Monday, and everyone there was blown away as well, by her heart function, her beautiful incision, her pain tolerance, and her great attitude. So please don't think that there is something wrong with her heart. That said, my girl is struggling.

Emma's recovery in the CICU was very quick...too quick, if you ask me. They practically hurled her into the step-down unit. The nursing on the unit was still 1:1 or close to it, and we had the most caring, professional, and helpful team. The problem is that Emma and I both expected her to be further along by the time she got to step down, so we were both a little thrown off by how needy she still was. The first 4 days in step down were exceptionally difficult. Hearing Emma crying and calling for me, and knowing that my brave chica was in so much pain was the stuff of nightmares. When she finally turned the corner and we were discharged, it was like the weight of the world was lifted from us. I think that may have lulled us both into a false sense of security.

Emma came home on blood thinners, which is new for us. Trying to titrate her dosages and keep her numbers where they need to be to keep her valve functioning without overshooting the mark and causing a wealth of other issues has not been the cakewalk I had hoped for. She is getting labs drawn once a week or more, which unnerves her, and-- here's the kicker-- because we couldn't get her values where they need to be, we've had to add on an additional med. No big deal, right? Meds are my second language. Except this one is an injection that needs to go in subcutaneous fat every 12 hours on the nose. Our schedules are literally dominated by what time she gets her injection. Worse than that, you know that "subcutaneous fat" thing? Um...have you MET my daughter? She's 5'2" and 107 lbs. WITH CLOTHES ON. The kid has no body fat whatsoever. Yet there we are, twice a day, hunting for the one little area of her body we can stick where she may have slightly more skin than elsewhere. It's a nightmare. The injections give her massive hematomas if we don't get them in the right place, and they cause her a lot of pain. She looks like a big pincushion, covered in purple bruises all over the backs of her arms and the insides of her legs. I can't even try her tummy because she's still covered in nasty bruises from the surgery itself. Ironically, the meds she needs to keep the valve running cause the bruising to be a thousand times worse, which prevents me from accessing a lot of areas. Tonight, I made her cry. It was "the worst one," and I want to literally hurt myself just so I can feel the pain that she has to endure. (NOTE: That is NOT a cry for help or anything- just literally me wishing I could feel some of what she's feeling, as if that would somehow make things better. Which it wouldn't. And I know that. So please, no need to worry.)

On top of the injection situation, Emma has practically zero appetite, and since she's already out of shape since surgery, she has no energy. I make her get up and about and get some steps (no bed rotting allowed), and she has been out to work with me for a few hours at a time, to one of her sister's games, and to a couple of stores briefly. She just has no energy and no interest in going anywhere. I had to force her to ride in the car with me this evening to pick Regan up. I got her a milkshake, since she'd only had fewer than 500 calories all day. She drank about three sips and decided to "save the rest for tomorrow." Famous last words. I put it away for later in what I've begun referring to as the place where Emma's leftovers go to die. It's so disheartening.

The worst part of all is the effect this is having on her attitude. She tries to be happy and positive, but she is sick and tired of being sick and tired. She naps a lot and is so low-key that I barely hear her voice half the time. She has been seeing her counselor (and she saw someone while inpatient as well), and we are actively trying to keep her mood up and keep her engaged, but that's not easy, and from my perspective, it's exhausting. I've got some kind of caregiver burnout happening here. I feel like I'm constantly on the edge, and that at any moment I could break. I've also been crying at random times, which is equal parts helpful, as I get some emotion out, and frustrating, because I'm tired of feeling like this, too.

We go to Philadelphia for a few appointments on Monday. Emma and I are going solo, leaving on Sunday. I hope that this girls' trip will be a source of some laughs and silliness and also some good news from Emma's medical team. Maybe we can even stop the injections (I'm whispering that so I don't jinx it). Fingers crossed.

Please don't get me wrong-- I am so grateful for everything we have. Life is tough, but it could always be worse, and I am painfully aware of that. I appreciate God, my family, and our support system for holding me up. It is funny, though-- people tend to be very concerned about the surgery itself. Once the patient makes it through, I think the tendency is to say, "Thank God everything is better" and to move on. The reality is that the surgery is just the beginning. Coming home and dealing with all of this on top of regular life, my other kids, the dogs, my job, the bills, etc. is just a very heavy load, and some days (like today) I don't think I'm carrying it very well. So please, if I could be so bold, say a quick prayer for strength for me. Emma is struggling and I need to be strong for her, and I can use all the good juju I can get. Thank you all, and above all, please keep my baby girl in your hearts and prayers. She needs it more than I do.

04/16/2026

Home. Exhausted. Grateful. Will post more tomorrow. Goodnight!

04/14/2026

Emma had a great afternoon on Monday, a great night Monday night, and a great Tuesday morning. She is doing ALL the things she needs to do, and in the words of her primary cardiologist, “her heart is in better shape than it has ever been.” That’s amazing, and some of the best word I’ve ever heard.

We still aren’t at a therapeutic dose of her anti-coagulant, so that has continued to delay our departure, but the team would like to see her be on her way. That said, they are willing to make some protocol exceptions, including having me inject Emma from home twice a day with something she needs to bridge the gap until she gets to that therapeutic level. Brian and I have spent the last two hours training, and prior to that I had meetings with the anti-coagulation team to coordinate everything that needs to happen. She has new medications that require much more monitoring and restrictions than we are used to, so I’m a bit behind the learning curve. We will have quite a few appointments in the near future which will require a lot of scheduling and planning, but the resources her are helping a lot with that, which keeps me from feeling too overwhelmed.

Emma has some patient education today, plus a blood draw, PT, and a follow up with the counselor. Once the labs come back, provided the numbers are in the correct range, she will be discharged later today!! We will spend the night at the hotel, and if all goes well, we could be driving back to the B-Lo tomorrow!! This is great news, but we want to knock on wood because it might not happen.

I’ll be sure to keep you all posted. Thank you for your support, and please continue to send prayers and good thoughts for my girl. 🩷

04/12/2026

I’ve lived in a lot of places in my life. For years it felt like I was always moving, from one apartment to the next, from one house to the next, from one state to the next. I consider several places home— my hometown of Milford, CT, my beloved New Orleans, and my home of the last 18 years, Buffalo. But there is one place that is so special to me, where I have spent a crazy amount of time without actually being considered an official resident, and that is Philadelphia. University City, to be specific. A 2.4 square mile neighborhood that’s home to 55,000 full time residents, 50,000 college students, 80,000 jobs, an Ivy League university (GO UPENN!), some incredible hospitals (including the country’s best Children’s Hospital), and some of the best restaurants around. I love this place. I love the street food vendors, the Penn campus, the 24/7 buzz, and even the traffic. This place is a whole vibe, and you have to know to know. I can get around these streets blindfolded, and I feel like I belong here. But the last week has reminded me that my real home is where my family is…and I want to go home.

Regan flew back from her west coast adventures today, and my mother, oldest brother, and son all picked her up from the airport and took her to dinner. Talk about FOMO. That was tough. Rey goes back to school tomorrow and life continues, while the three of us exist in this alternate universe where eating, p*eing, and walking well are the standards by which Emma is measured, and no one judges if I have pajamas on at 5:00 at night.

We have tried hard to keep days and nights straight, and we’ve been successful so far- knock on wood. Emma is finally able to wear pjs, so she looks adorable when we take her on wheelchair rides around CHOP. Last night we were praying for a good night, but her nausea was off the charts. This morning was a major struggle. She was so sick to her stomach and she actually threw up trying to take a zofran. That’s some irony right there. Emma tried so hard today during PT, walking further than she has, and she even managed to eat some applesauce later on (after IV zofran). It’s so difficult to see her like this. This afternoon has been better, and she even did some art with her new supplies from her new purple art tote. That wore her out, and now she’s trying to nap for a bit. Please pray that she continues to feel better and that she manages to start eating (more than one cup of applesauce). She can’t get on her new meds until she eats more, and she can’t go home until she’s on her new meds. We’re like hamsters on the world’s most frustrating wheel.

On a more positive note, thank you again for the support and love that has come from every corner of the country. We receive messages and prayers throughout every day, and we feel so loved. Someone Brian went all through school with and hadn’t seen in years reached out yesterday with money for DoorDash, which was an amazing surprise and so appreciated. Thank you, Joanna. We are touched by your kindness and generosity. Our circle has widened to gargantuan proportions, which I can only attribute to the power of my little girl and her spirit.

Yesterday evening, during a quiet moment before bed, Emma looked at me with those beautiful green eyes and the saddest face and said, “Momma, I want to go home.” So do I, my girl. So do I.

04/11/2026

I’ve said it before and I’ll say it again. I hate roller coasters. I had to be removed from one when I was small, and it’s been a no-go ever since.

The course of most post-op recoveries goes something like this: the surgery itself is Day 0, and the patient is out of it; on Day 1, it’s quiet until the meds wear off and then you hope that you got enough new ones on board in time to prevent falling behind; Day 2 involves some combination of pain, more pain, lack of sleep, and extreme discomfort, with a side of vomit; Day 3 is like false spring- it lulls you into a faux sense of security. Starts off well, and then after every specialist in the hospital puts your kid through their paces throughout the day, you are left with an emotionally frazzled, over-tired, over-stimulated mess of a child who is now so far gone that she is unable to sleep at all and dancing on the cusp of a full-blown panic attack. It genuinely feels like a roller coaster, and I’ve already explained how I feel about those.

Someone from respiratory therapy just knocked on the door to our room and called out in what would, under any other circumstances, be described as a sing-song voice, “Helloooooo!“ I jumped out of my seat on the other side of the curtain from my finally-sleeping child like a rocket, squinted to see who it was (because I can’t find my glasses in the dark and I don’t really want to see anyone anyway), and must have looked so…awful? terrifying?…that the woman choked out a quick, “I’m from Respiratory and I just need her numbers. Got ‘em!”, followed by something else that I couldn’t hear because I was telling her in my best stage whisper, “DON’T WAKE HER UP!”

I fear I have become that parent. I can only take so much. I spent TWO HOURS talking my delirious, completely panicked child off the proverbial ledge, and I have nothing left in the tank. The next person who wakes her without running it past me first will feel the full wrath of my ire and hey- from what my kids tell me, that’s pretty bad.

Oh hang on…Emma is awake.

Nausea sucks. Especially when you just had your chest cracked for the fifth time and it really hurts. So we’re dealing with that now. Please pray that this pain subsides and she starts to feel better again. None of us can handle any more of it, especially my brave girl. It’s so hard to see her at the end of her rope.

I had planned on making a really positive update earlier today, and if I had time to do it then, I certainly could have shared all the advancements Emma made today. But I waited too long, the pain caught up, and now it’s just overtaking us. I apologize for being so negative. You know that’s not my typical M.O., but it’s just such a tough time right now. Without my parents here and with Emma being so very needy, I haven’t left her room in over thirty hours and I’m going stir crazy. Brian has been allowed to leave to go downstairs and pick up our door dash orders (we will officially be bankrupt by the time this is over), but even then Emma wants him to come right back up. I’m not allowed to go anywhere, and it’s extremely difficult. I know, though, that these are minor inconveniences for us, and absolutely inconsequential compared to what Emma is going through. I just pray that she feels better as soon as possible so she can recover and we can go home. Your prayers to that end are requested and greatly appreciated.

Thank you, and one last note- if you can, please call your moms and tell them how much you love and appreciate them. If they’re like mine, they’ll go to the ends of the earth for you, just when you need it.

04/09/2026

We expected yesterday and last night to be rough. We weren’t wrong. There is no greater hell than listening to your child crying, “Momma, it hurts!” We can’t do anything but reassure her, tell her how brave she is, hold her hand, rub her forehead, and keep our OWN emotions together. As much as I wanted to break down myself, that won’t help Emma, and after all, this is all about her.

The good news is that she was moved to the step down unit late yesterday afternoon, and she has the most incredible team over on this side of the unit. Emma was seen by a cardiologist who saw her when she was born and again at six months, and she is one of the most gentle people I’ve ever known. She has two of the best nurses we’ve had in our 23 plus years at CHOP, and every clinician who has come in has been warm, supportive, and helpful— and most importantly, they’ve all gone to great lengths to really listen to Emma.

Our overnight nurse finally got Emma in a good place around 4:30 or 5 this morning, and our girl has been able to get a little sleep. Brian and I took turns in the bedside chair and the little daybed in her room. Brian probably got 5 hours, broken up in pieces. I got about three. I’m hoping to get back to the hotel for a quick nap and shower later this morning. My parents (God bless them) have been with us since Monday, and they relieved us yesterday for about three hours so we could nap and get cleaned up. They have to head back to Connecticut, but will stay with Emma for a bit before they go, for which we are so grateful.

The plan for today is to stay on top of the pain, to sleep, to drink water, to perhaps have something to eat, and to p*e. Once she’s a bit better, the name of the game will be getting out of bed, but we aren’t there yet. Please pray that Emmy can sleep peacefully for a bit without blood draws, imaging, and whatever other sleep hindrances are planned for my baby today, and that her pain is controlled all day. None of us can handle another day like yesterday, physically or emotionally. Frankly, I can’t imagine what this post must sound like- I’m delirious while I’m writing it.

Thank you again for the prayers and support. We appreciate them so much.

Zzzzzzzz 😴

04/07/2026

We have excellent news. Emma’s surgery went exceptionally well, and she has been sleeping all afternoon. Her surgeon was very pleased with everything. He removed the HAART device that he placed in 2020 and put in the new valve with zero difficulty whatsoever. The next 12-18 hours should be relatively calm, but then comes the tough part. Day two which is technically Thursday will likely be the hardest day, and honestly I’m dreading it. So I’m going to rest here at the bedside with Brian, tell my baby girl how proud she made us all, and thank God for keeping her safe.

More to come tomorrow. Until then, thank you all so much for your prayers, your calls, your messages… It means the world to us. Thank you.

04/07/2026

Before we tuck in for the night, we want to thank all of you for your prayers, texts, emails, DMs, gifts, positive vibes, and good juju. Emma is first case tomorrow, so we will be heading to CHOP at 5:40 AM for a 6:00 check in. We have requested our favorite anesthesiologist and it looks like we should have her (knock on wood), which is HUGELY comforting (IYKYK, right Heather Trudeau?!). Dr. Chen called me this evening and he and his team have a good plan in place for tomorrow’s procedure. Emma just finished doing her pre-op procedures this evening, and is ready to fall into bed. We have done everything we can to prepare, and now we have to turn our girl over to God and to her medical team and let them do what they do best.

I will post updates on this page when I can. In the meantime, I’m kindly asking that you hold off on texting or calling our cell phones. We so appreciate everyone’s well wishes, but our phones have been blowing up and we need to keep them available tomorrow for updates from the surgical NP.

For your enjoyment, I have attached a pic of Emma doing her favorite pre-op ritual- walking to Wawa with Brian to get snacks and drinks before her eating cut-off. It’s the little things, right?

Again, thank you all so much. Wish us luck tomorrow. ❤️

04/01/2026

Reality has set in, and we don’t like it. We leave in five days. Just writing those words adds a fresh layer of stress and anxiety to the burning angst that sits in my chest like a flaming elephant. From all outward appearances, I’ve got things under control, and things seem to be coming along nicely…as long as you don’t scratch the surface. I feel like the Wizard of Oz, and I’m hoping nobody pulls back that dang curtain.

To say that everyone in this house is a little edgy these days would be putting it mildly. Brian and I are chewing rolaids like candy, and I haven’t slept more than three consecutive hours in weeks. Emma is struggling with an anxiety that lives just below the surface and is always threatening to bubble over. We’ve been using all of the great anti-anxiety items she received from her wish list— meditation cards, aromatherapy, a guided breathing Buddha— and that has been helping. She tends to get stressed when people wish her good luck and say goodbye, which has been happening a lot this past week, so we’re leaning heavily into stress squishies, snuggling, and using her many new art supplies. Who knew that dot art was so zen?!

Tonight was the last practice for Coach Emma before surgery (there is a strong correlation between a cheer gym full of kids and getting a raging case of cooties), and her co-coaches and team gave her some beautiful gifts. The little ones (ages 3-4) made her the sweetest cards. She was touched. They were lined up to hug Coach Emma before we left, and you’d never know how anxious she was. Those little cheerleaders made her smile and forget about things for a little while, and for that I am truly grateful.

Many of you have asked how Alex and Regan are doing. They’re hanging in there, worried about their sister but full of hope. Emma asked Alex to come to CHOP with us, but unfortunately he has to work. Regan, in typical fashion, will be having a fabulous week in Los Angeles. In the past, whenever Emma had surgery or a procedure that took us to CHOP overnight, she would stay with her BFF, Tali. Tal’s family moved to California a few years back, but the minute they found out that Emma was going back for more surgery, they reached out and claimed Regan for the week. They’re flying her out on Friday and she’s staying until the following weekend. Rey and Tal have big plans- Las Vegas, Palm Springs, Phoenix, and Tal’s home base in Seal Beach. Oh, to be Regan McDonald! Seriously though, we are lucky and blessed to have the Picciones in our lives. They’re Rey’s second family, and (other than her 5 hour flight), I won’t have to worry about her one bit. That in itself is a blessing.

You all have been so kind and generous, sending the most incredible and thoughtful gifts, and Emmy and I are slowly working our way through the list of thank you’s. We are so grateful, and to be honest, a little blown away. People from every corner of our lives have reached out- family, classmates from high school, softball friends, cheer friends- you name it. There aren’t enough words to express how much we appreciate you all for making our girl feel so loved and so special. Your prayers and good thoughts are especially uplifting, so please keep those coming!

NOTE: We received a few items without gift receipts - if you sent any of these, would you please let me know so that we can properly thank you? Black Calvin Klein sweatpants, a Bridgerton teacup, and a $50 DoorDash gift card, all in separate packages.

Thank you again for checking in on my brave little bestie. I will update throughout our journey, so please check here for the latest word on EmmaD. 🩷

Adventures with Emma

05/04/2026

05/02/2026

04/16/2026

04/14/2026

04/12/2026

04/11/2026

04/09/2026

04/07/2026

04/07/2026

04/01/2026

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