Spring 2026 Update

Hi. Just going to jump in here and try not to think too much about it. 

In my last post I listed some upcoming appointments. 

Here are some updates:

Electrophysiologist (Pacemaker) - She's seen him twice since my last post. There is a device near her bed that sends her pacemaker transmissions to Children's National every few months. They review it and let me know that all is okay (usually). In February, I learned that her heart had two events. One she's had before and is on meds for already (NSVT). The other one is new to her (atrial flutter, which lasted about three hours). So, he increased her meds and said we just need to watch her. He asked if she was sick during the time period of her events - and she was! He said we just have to really watch her when she gets sick because it really stresses out her heart. Awesome. 

Hepatologist (liver doctor) - they ordered a CT scan with contrast to try to get a better look at her liver. Normally, they would do an MRI, but they can't with her pacemaker. Basically, they were looking for potential cancer, since she is at an increased risk with the extra pressure/work on her liver due to her heart/lungs. So far, so good. 

She had her wisdom teeth extracted and I am shocked that all went well. No issues. 

Opthalmologist - all stable there. Also, sadly, I have given up on the whole occuloplastic surgery that I was trying to coordinate this time last year. That was a mountain I just couldn't move. Turns out they wouldn't consider trying to do both surgeries in the same week even, which would mean another trip to Boston JUST for her eye. I just can't even think about it anymore. 

Bronchoscopy - she had a bronch in February and it was really just a check up. I don't think she's had a bronch since the whole airway reconstruction in 2018. But, my memory is a little fuzzy. Anyway, her local ENT said it has been a long time and we should just check it out. I almost canceled it. It is hard to work in "well checks" when we are already doing so many appointments. But, for some odd reason, I didn't. Anyway, can you believe that she had so many granulomas blocking her airway!?!?! Wow! I really don't know how she was handling her speaking valve at all. Her ENT showed me pictures and it was crazy. Thank God she suggested the bronch! Harlie is definitely tolerating her speaking valve so much better and I really feel like her voice is so much better! She will have a follow up bronch at the end of May. Unless I reschedule it - because I'm writing this post on May 5th while she is in the OR...

In other news:

My Mom went on Hospice in August. We moved her into a house that has a caregiver that lives there. Mom had her own bedroom. At first it was hard on her (it was hard on all of us, really). But, she finally got to know the people there and they were good to her. She had dementia. My Mom deserves her own post, but I just don't have it in me to write about her yet. She declined through the winter. By February, on my way to visit her I was always afraid she wouldn't remember who I was. The last time I visited her when she could speak, she told me that I looked just like her daughter. She also said I was pretty. It was so hard to drive to see her. It was harder to leave. She passed away on March 1, 2026. 

Even though we knew it was coming, I was so surprised at how hard it was. I thought since I know a thing or two about grief, I would handle it better. Not better - maybe I thought I would be less sad. But, it doesn't work that way. Honestly, I'm still sad. Which is probably why I don't want to write about her yet. 

On March 21, Harlie went to the All-Star Prom (prom for exceptional education students in the county). I didn't commit to her going in time to secure transportation - so I dropped her off and picked her up. Tom was out of town that weekend. No matter what, it is always hard to drop her off somewhere. Is she polite to other kids? Do other kids talk to her? Does she talk to other kids? Will she have fun? Will something embarrassing happen to her? She said she had fun.

April 9th - We announced that we were closing down operations for We Heart Harlie & Friends. This was such an incredibly difficult decision. This is also a subject that I feel deserves it's own post. This also makes me very sad and I'm just not ready to write about it, either. 

April 11 - Since she went to the All-Start Prom, I was kinda hoping she wouldn't want to go to her school prom. But, she did. Since she had just worn that other dress (that she's worn before), I ordered a bunch of dresses and hoped one would fit. Thankfully, one did. Well, it was too long, but I was able to just cut off some material at the bottom to make it work. A seamstress, I am not. 

The prom was at a hotel. Cooper and his girlfriend and friends went out to eat before. So Tom and I drove her to the hotel and dropped her off. Dropping her off at a hotel was way harder than dropping her off at the high school for the All-Star Prom. But, her teacher sent me photos and videos of her dancing and that made me feel better. Cooper drove her home and they all had fun, I'm told. I don't know what I'm going to do when Cooper graduates and Harlie won't have him around anymore. I try not to think about it, because it makes me sad and scared. But sometimes I can't help it. 

Cooper picked out his suit and purchased it himself. I don't have a picture of him and his girlfriend, but he selected this suit because it matched her dress. 

April 23 - Murphy and a friend of his drove to Pittsburgh for one night to attend the first night of the NFL draft. Those crazy kids. It is so funny to remember that just a few years ago, Murphy didn't know or care anything about football. Today he is a Steelers super fan and a football expert. Haha! Thank you to our dear friends Mike and Laura for putting them up for the night!

Murphy came back the next day (Friday) so he could attend Cooper's school play - Shakespeare's Twelfth Night. Cooper played Sebastian. He was so great, as was all of the students! It is truly amazing what these kids can do. We have already been super impressed with their ability to memorize and perform all their lines - but Shakespeare? That's on another level. Anyway, it was great - we all loved it. I went two nights. I just love getting to watch Cooper on stage. 

Cooper is in the center, to the right of the girl in the blue dress.

Cooper and his girlfriend (Riley). She was Antonio in the play. 

Mary Ann (aka Grandma) came down for the weekend so she could see his play. 

April 26 - We went to see the Richmond Flying Squirrels for Tom's birthday celebration (his birthday was on April 28th).

Our friend Dave made this happen. It is hilarious because Tom turned 53. Haha!

May 1 - We went to Banana Ball. It was crazy. It was our first time experiencing the chaos that is Banana Ball. 

It was the Firefighters vs. the Clowns. There were "characters" all over the place. 

I would say that it is more like a show with a side of some baseball-like game. It was fun and different.

What's ahead:

May 11 - Murphy's 22nd birthday. I really hope to be home from Boston before his birthday. 

May 12 - Murphy graduates from Reynolds Community College. Now I REALLY hope we are home for his graduation. We are so incredibly proud of him. He worked full-time while going to school and paid for all of his classes along the way, all on his own. 

May 15 - Murphy is moving out and moving in with a friend of his. Thankfully, he won't be too far away (20-25 minutes or so). I am unable to write about this right now as well. Yes, I am so proud of him. Yes, I am so happy for him and excited for him. Yes, I know he is ready. Yes, I know this is the way it is supposed to go. Trust me - this is not the way it will go with Harlie - so I know to be so grateful for the life experiences that are good, normal, and all that jazz. But, I am going to miss him being in our home and sharing our address more than I can say. This year has already been pretty hard as far as changes go (there have been many) and I am just going to need to feel what I feel. 

This year should be the year that Harlie graduates from high school. But, it isn't. This definitely needs it's own post. There are so many feelings that go along with this. Just know that I'm feeling pretty raw right about now. Some days I find myself so angry - at everything. Then I realize that what I'm feeling is just pain. Pain all over. Every interaction I have just causes me pain. Even when I'm happy for someone else, it just reminds of me of what we've lost. 

Anyway, that's it for now. I'll start working on the hospital posts. 

As always, thank you for reading, thank you for caring, thank you for the love!

Christy xo

ENT Update

So, they took her back at 8:39am.  We got here at 6:45am.  First thing this morning, we had a flat tire!  Of all the luck!  There is a big screw in the right front tire.  Let me just say that we did NOT need the added stress.  So, we limped to the hospital and Tom will take care of it when the spinal fusion is underway (since that will take several hours).

She got mad when she saw the hospital bracelet.  At first she held out her hand, but then changed her mind.  We ended up having to put it on her ankle - and that was a struggle.  Then they called us back and she saw the bed and hospital gown.  Oh no.  We're in a bad time period.  Old enough (and experienced enough) to know what's going on, but not old enough to understand why and be able to prepare on her own.

She broke my heart turning away from us in her stroller and shooing us away.  She wanted no love from us this morning.  Then they brought her Versed.  That definitely helped her relax.  But even still when I asked her if she wanted to sit on my lap, she shook her head "no."  Like a knife through my heart I tell you!!

It is now 9:55am and we have spoken with her ENT.  Her ear looked good, except for the large amount of ear wax gooped in her canal.  Wearing a hearing aid 12 hours a day makes things worse in that department.  So, he started us on an ear drop regimen.  Hopefully that will help.  He said her ear drum looked good and there was no sign of infection.  So he did not place another ear tube.  Which is good, I guess.  Her other one had fallen out and without any infections in recent memory (years) there was no reason to replace it.

As far as her jaw goes... he still could not use a rigid bronch.  He said that's not necessarily a reason to keep the trach.  The problem will be if she doesn't have the trach, they will not be able to intubate her for surgeries.  That's disappointing.  Not sure what would/will happen then.  He used a flexible bronch that is fed in through the nose.  He said you can use that for surgeries, but it is tricky.  Not really a concern right now, obviously.

He said that her tongue base and jaw still occluded a little bit during the bronch (when they didn't lift her jaw up out of her airway).  So, that's unfortunate.  But he said that a bronch is so subjective for her situation.  The only way to see if she can be decannulated is to have a sleep study.  She would be inpatient here, and while she's sleeping they would cap her trach and see what happens.  She does fine while awake, but sleeping could be another matter.  :(  So, we will plan to do that sometime this summer.  He said that her trachea itself looks great and healthy so if we can just keep her jaw out of the way, we'd be home free.

I am certainly disappointed overall.  I really thought that he would be able to see a positive difference from the last bronch.  But he said that it was only slightly better than the previous one.  Her jaw was just so severe at birth.  Ugh.

He said that since she doesn't have any chronic lung issues (infections, etc.) that he would decannulate her whenever she was ready - no matter the season.  So, that's good.  So, I guess we'll just get that scheduled at some point and go from there.

Moving on...

Earlier when waiting to be taken back to the OR, her ortho surgeon came to talk to us.  She said she might consider fixing the area higher up on her spine (kyphosis scoliosis) - the part that bulges out.  But, she needs to see how long she's in there and after fixing the bottom part, she needs to get x-rays to see how it affects the bulging (kyphosis) part.  They said they would call us to let us know what she decides because if she continues on, it will add another hour to her surgery time.

The negative to fusing the upper part today is that it will no longer have any growth potential.  So, that would mean that two areas of her spine would be fused and not grow.  But, she said she can't be certain that it would have grown normally anyway.  The areas are abnormal in nature from the get-go - who's to say it has any "normal" growth possible?  And any growth she does have will just keep it going more crooked.

In situations like this - I just try to not think about it and put it in their hands to make the best decision for her.  Not that I had a choice, really.  It's a good thing I was never a controlling person before Harlie came along.

So now we wait.

I wanted to show you pictures of the Ronald McDonald House and of Harlie in her hospital gown.  But, we forgot our USB cord to upload the photos from the camera!  Ugh.  So, we'll have to see what we can do about that.  I can't live all week without showing you pictures!

Oh, and during our wait to go back to the OR, we met with both anesthesiologists.  The ortho doc was pretty funny.  He said we had no idea how much planning and time has gone into preparing for this surgery.  He said he knows her history intimately and the amount of e-mails were crazy.  I told him now he knows what our daily life is like!!!  Try throwing two boys into the mix and BAM! you go crazy.  And then you want a Pug puppy.

It's now 10:36 and I just heard from Tom that the tire is plugged and it only cost $17.  We were nervous that we were doing some damage to the tire driving on it to get here.  So, hopefully that will last us a while.

Okay, I will update you more later.  Thank you for all your comments, messages, texts, etc. of support and encouragement.  I can't tell you how much your outpouring of love for us makes us feel during hard times like these.  While my heart breaks in some places, it swells full in others.  Thank you for that!

xo,
~Christy

Pre-Op Day

We went to DC on Thursday for her pre-op appointment.  It was fine.  Traffic up there wasn't that bad, which always makes me happy (yeah, it doesn't take much).  We met with a cardiac anesthesiologist (CA) - the one that was with Harlie when she was transported from Washington Hospital Center right after she was born.  She told me that she remembered Harlie from then (which I think is amazing considering how many kids she's seen over the years).

Anyway, she said that a CA and an ortho anesthesiologist (one that is very familiar with spinal fusions) will be working together on her case during the surgery.  I am very happy about that.  She will go to the CICU (cardiac intensive care unit) immediately after surgery.  But after that, we're not sure where she'll go.  She will either go to the HKU (heart and kidney unit) or the ortho recovery unit.  They will have to see how she's doing cardiac-wise to figure that out.  Should she be cared for by heart nurses or nurses that know spinal fusion surgeries and body casts?  I can't help but think that if she is stable cardiac-wise that maybe ortho nurses should care for her.  But, we'll have to see what the team thinks at that time.

At some point during our conversation she said that if a doc were to read Harlie's medical history and then meet her - they would not think they were the same person.  I just love hearing this.  It really goes to show how incredibly strong she is and how hard we have all worked to get her this far.  And by all - I mean everyone that's worked with us to help her.  Harlie's team of professionals is a large group of wonderful people that includes her nurses, therapists, nutritionist, teachers, etc.  One day I want to write something like "Meet Harlie's Team" or something with pictures of them.  I just think they are such wonderful people for doing what they do everyday.

It's really weird how I think she's doing so great and we are getting closer to normal as the years go by.  She's just a little girl to us now.  But, to them she is a complex medical patient.  It's just a weird transition to make as we go into another hospital stay.

Anyway, as far as details of the day go:

Surgery is scheduled for 8:30am.  We have to be there at 6:30am.  Harlie's ENT will go first and will work on her ear (in desperate need for that!) and put a new tube in.  This will be her fourth.  And the last time he put in a "t" tube that is supposed to last years - hers still only lasted less than a year.  I'm not sure what, if anything, we can do about the fact that her ear won't hold on to tubes.  It's frustrating because we really have to do everything we can to take good care of that ear - it's the only one she has!

Then he will do a bronchoscopy.  This is a really big deal this time.  It will be her first bronch since her last jaw reconstruction surgery in December 2009.  It has been well over a year since, so it's pretty safe to say that her jaw isn't going to recede anymore than it has.  And she's been doing great wearing her PMV (speaking valve, which allows her to inhale through the trach, and forces her to exhale out her mouth and nose) most of the day, on most days.  She's even learned that she can still cough while wearing one.  And sneeze - which is the cutest sound EVER!

So, I have high hopes that her airway is free and clear and is no longer obstructed by the base of her tongue.  This is the first time I've felt this way.  And it is a little scary.  Daydreaming about life without a trach is dangerous.  I'd rather not go there if we're still years away.   At this point, I would just like to be able to talk about it with her ENT as being a possibility in the near future.

On the negative side - if he comes out and says that her airway is NOT free and clear of the obstruction, I will be devastated.  Not that I've gotten my hopes up (even though I have) but because that would mean that two jaw reconstructions haven't worked enough to get that trach out.  I know she needs another one anyway (her jaw is very asymmetrical and chewing would be very difficult).  But if two didn't work, then who's to say that a third would?  Too scary to think about.

So, they said he needs an hour, so hopefully we'll know something by mid-morning.

After he's done, her ortho surgeon will start the spinal fusion surgery.  I think they told me that will take four or five hours.  So, it will be a long day.  This time we'll have internet access (YAY!) so I'll be updating the blog throughout the day.  It's a good stress reliever for me.  I'm not sure what it does for you.

So, after we were finished discussing the day and her history, we went down to the lab.  They didn't need to take that much blood (which is great).  But they are going to have two liters on hand during the surgery because they said that bone bleeds pretty heavily.  Yuck.   We got Albert - we've had him before - and he's really good.  He got her on the first try and without having to put the tourniquet on in six places first.  He put it on, and stuck her and it was done.  She hasn't gotten that if she stays still it will be over quicker.

Brandy holding Harlie during a blood draw.

After blood work, we were done.  It was about 2:00 I think.  Since we were there at lunch time, and we were HUNGRY I went to the cafeteria to see if they had anything interesting.  But, I couldn't do it.  We will be eating there more than I will like this week.  So, we stopped on our way home.

Harlie rode the whole way home with her right hand behind her back, as if protecting it.  Then we got home, and she walked around and watched a movie like this...

She didn't move her hand from behind her back until bath time that night.  Oh, if that's how she feels about one blood draw - I don't even want to think about how she's going to feel about wearing a cast!!!

Well, that's it for the day.  That night I went out with my girlfriends.  But, more on that later.

Thanks for reading!
~Christy

Bronch Results

Where to start...

First, I must say that the trip to DC overall was great. Traffic was moving both on the way there and on the way home, so that wasn't much of an issue (always a great thing).

You know, I wish I knew how many procedures Harlie's had at a hospital that have required anesthesia (in her life). I suppose I could try to go back through my calendars and see if I could find them all. Despite her knowing very well where we are and what's going to happen, she just doesn't seem bothered at all. The nurse doing all the pre-op stuff to her looked right at Harlie and said, "I can tell you have been through this too many times, you are way too good." The whole time all the other babies are crying and Harlie is just playing with us and letting the nurse do whatever she needed to do. Don't get me wrong, I suppose I am glad. If we have to spend this much time there, it is certainly easier on me that she's good and happy. Although handing her over to the team when it's OR time is NEVER easy. She does not let strangers hold her and it is agony to pry her little fingers and hands from my arms. How many times are we going to have to do this??

Oh, I have to say that there was a resident there that came in to ask me if I had any questions. HA! I should have asked him if he had any questions!! Just to give him something to think about, I asked him how long the procedure would take. He went on and on giving me some BS answer that simply made no sense at all. I should have told him that it is okay to say "I don't know." As a veteran of the OR, I saw through his BS answer, and, quite frankly, was insulted. I just smiled politely and hoped he would leave my sight as soon as possible. I looked at Brandy and she just started laughing, knowing very well what I was thinking. I really think I've hit my breaking point with residents. The next time I get someone like that, I'm going to help educate them on talking to moms like myself - politely, of course.

So, Harlie had a bronchoscopy. The goal was to see if the jaw surgery actually got her jaw out of her airway and to make sure there were no other airway issues (scar tissue, granulomas, etc.). The good news is that her airway looked great and he said that the jaw was completely clear from her airway. Definitely improved from before, of course. Keep in mind that this doc is the one that performed her emergency intubation right after her birth. He said that at that time regular intubation was impossible due to the severity of her underdeveloped jaw. And he did her bronch last year, so he knows her intimately.

The bad news is that he could not use a rigid bronchoscope, even though he was able to use one last year. This was puzzling because if anything, given the jaw surgery and her growth in one year, it should have been easier, not impossible. He said that he believes it was because of her cervical spine abnormalities. She has some vertebrae that are fused together making mobility impossible. So, basically she has a lot less range of motion (looking up especially). Great. Just when I think one of her abnormalities is "no big deal" and completely livable without being obvious or a pain in our butts, it rears it's ugly head. UGH! I guess he couldn't tilt her head back enough to get the bronch in the right angle. I don't really know what this means for her. I'm choosing to put it in the back of my mind for now.

He also looked in her good ear. I am SO happy he did that! Back when she got her wires removed, she also had an ABR test on her hearing. They said she had mild hearing loss in her good ear (which did not make me happy, of course, since she only has one). Well, he said that her ear tube had come out of her ear drum and was in the canal, and a granuloma was growing around it and it was blocking the canal! So, he removed the granuloma and the tube and cleaned it all out. YAY! That would certainly explain her loss of hearing! I noticed lately that she would play with a very loud toy right up to her ear and not even be phased by it. So, hopefully this means that her hearing is great.

So, since her airway looked good, he did downsize her trach (which allows more air to pass by the vocal cords). So, after she recovered for a few hours a speech therapist came to see her and test the PMV. The BIG moment! She brought a pressure gauge and put the PMV on and her pressures were great! And she maintained her normal sats (oxygen levels) and kept the PMV on for... get this... 10 WHOLE MINUTES!!! I was SO pleased!!! The ST said that she was good to go. Of course, during the 10 minutes, she didn't make one itty bitty little sound. We tried everything, and she just sat there with her mouth hanging open looking at us like we had lost our minds. Then she pulled it off and put it back in the container.

Of course, I've tried putting it back on countless times, and she takes it off immediately. So, I have gotten to hear some squeaks, but that's it. We see our speech therapist tomorrow, so we'll see what she thinks. Maybe she'll have some ideas as far as getting her to wear it.

Well, that's it. Thanks for reading!
Take care,
Christy

ENT Results

Well, nothing happened today. Harlie's ENT doc didn't feel comfortable making any changes to her trach without doing a bronch first. I was afraid of that. The last bronch she had was last August when she had her lobectomies. That bronch was good in that her airway looked good with no scarring, granulomas or any evidence of aggressive suctioning. The bronch is done under anesthesia, so it requires another day trip up to DC. With my due date approaching fast (just 3 weeks away now!) he was able to get us in on Tuesday.

I definitely feel like we are flirting with disaster. The last thing I wanted to do was to be out of town (2 hours away if good traffic) for an entire day at 37 weeks pregnant. Granted, I will be right across the street from where I had Harlie, so it's not like we don't know the area. But still...


As much as I didn't want this bronch to have to happen, we simply have no choice. I am determined to get a PMV (speaking valve) on Harlie! I don't care what I have to do. It is so important to the function of her airway and swallowing, not to mention that hopefully it will get her understanding that she can make sound so we can make some progress in the speech department. Although I know that it won't be as simple as just putting the valve on and teaching her how to talk. I have a feeling we will struggle with her to keep the valve on. Since she will not wear an HME, it really wouldn't surprise me if she takes the PMV off, too. But, I am hoping that once she figures out she can hear herself, that will help motivate her to wear it. Clearly, we will have to cross that bridge later.


Unfortunately, this makes Harlie's 5th procedure under anesthesia in just 4 months!!! Add Murphy's surgery in and quite frankly, I am TIRED of hospitals!!!! Throw in all the pre-op AND follow-up appointments, not to mention the home therapies and it just gets overwhelming.

Monday should be fun. Harlie has to get a pre-op physical by her pediatrician (for the bronch on Tuesday) at 8:50am, then Murphy has a dentist appointment at 10:30, then Harlie has physical therapy at 11:30 and then speech therapy at 12:30. Ahhh, sounds relaxing, doesn't it?


Well, tomorrow the baby's furniture gets painted! Thankfully, our friends Susan and Paul are helping us out. Paul is a cabinet builder and has the necessary equipment so him and Tom are going to be working on it tomorrow. Hopefully Tom will be able to bring it all home on Sunday. I am so excited!


Well, that's it for tonight.
Take care,
Christy