A few weeks ago, I got a call from Mandy at The Pediatric Connection, the company that supplies all of Harlie's equipment, supplies and nursing. She asked if I would come and speak during their annual meeting, July 11th. I was in the car at the time, driving Cooper and his friend James to their swim lessons at Aqua Tots and, if you can believe this, I was running a little late. I know, crazy!
Anyway, she said they ask a physician to speak and a family member to speak, and they wanted me to speak as the physician. Just kidding. As the family member. Sigh. As much as I worry and fret about these public speaking engagements, I don't feel as though I can turn them down. So, of course, I said yes.
But, it was July 11th, so I had plenty of time to worry and fret about it later.
So, last week, Brandy called Mandy to ask her a question about supplies. And Mandy ended the conversation with, "See you on Wednesday!" And Brandy, confused, said, "What's on Wednesday?" And Mandy was like, "Our annual meeting - Christy is speaking." And Brandy was all, "Oh, Christy thinks it's JULY 11th." Mandy said, with a nervous laugh, "No, it's JUNE 11th."
Crap.
Okay, I have a few days. I can do this. No problem. Tom was headed out of town for a guy's weekend. But, I had a nurse coming for the weekend, so I was good. Brandy was going on vacation, but my nurse said she could stay and cover her two days, Monday and Tuesday, too. Great!
Unfortunately, things didn't work out that way. Tom left and my nurse had a family emergency that didn't allow her to come as planned. No nurse - for 5 full days. And by full, I also mean FULL of commitments.
I scrambled and luckily my friends and family pitched in to help. I missed the adult pool party on Friday night. And, if you know me, you know how much I HATE to miss a party! We just stayed home and watched a movie. It was good.
Then on Saturday, Nancy, my sister-in-law, came to get Murphy and take him to his swim practice. I sent Cooper down to my friend Bethany's house. And I put Harlie in the jogger stroller and tried to get in a few miles. It was hot and the stroller was heavy (kid, suction machine, oxygen tank, you know... the usual) and I was happy to get in 4.5 miles.
After I got home, I got Cooper and we rushed to the pool. Hung out there for a while and came home. After running around (literally) and working so hard to make sure everyone was safe, happy, fed, etc. Cooper whines in the car on the way home, "Awww, I never got to do a belly flop off the diving board."
First of all, who the hell
wants to do a belly flop off the diving board?! Seriously, what is wrong with you, kid?
Secondly, for the record, no one prevented him from doing this (although given the chance, I would certainly try). He had more than THREE hours to do what he wanted at the pool and clearly, he never chose to do that. Which, I wish I could contribute to good sense. But, clearly, he has inherited my poor time management skills.
And, while driving home, exhausted, I couldn't help but wonder,
is it ever good enough? As parents, and especially moms, is all our hard work to make their lives richer (as in good times, excitement, fun, etc.) ever good enough?
The rest of the day was spent trying to get them to stop annoying each other, and most importantly, me. It was great fun. Not.
We all survived, and that's what's most important. But, I never got two seconds of time to myself to write my speech for Wednesday. No problem, I thought. I'll have time when Murphy's at school on Monday and Tuesday. Well, with no nurse, that proved impossible. I got some time Monday night, after everyone went to bed. But, not enough to finish it. Mandy said they wanted me to talk for about 15 to 20 minutes! This was no quick write.
Again, Tuesday night, I worked on it and finished it. I felt pretty good about it. But, was a nervous wreck anyway. I don't know why I fret about these things so much. But I do. I always have a sense of,
it's just my life, why would anyone want to hear me talk about it?
But, it was the annual meeting of a pediatric home health company. They must care about kids and their families! It's their business! And, as it turns out, they do.
I woke up feeling really crummy. My throat was sore and I could not stop coughing. Every time I tried to take a deep breath, my lungs needed to cough. Great. How was I going to get through 15-20 minutes of talking?!?!?
When Jamie got here, I ran up to Walgreen's and got some cough syrup. I rushed back home, took a shower, got ready, Kelly (my niece) came over to watch Cooper and Jamie, me and Harlie left for the Science Museum. I never ate breakfast and was feeling really horrible - no appetite, yet hungry, sick, nervous, tired, etc.
After we got there a bunch of the employees I know (respiratory therapists that have been to our house over the years, nursing people, etc.) came out to say hello. And a few people said they were excited to hear our story. Crazy!
When it was time for me to talk, Mandy walked us all up to the front of the room and introduced all of us. She had Harlie say "hi" into the microphone and her little voice was so clear and cute - the whole crowd melted! Good Harlie, get them all warmed up for me!
Then it was my turn. I stood behind the podium (which was great because I didn't have to hold my papers). I told them I woke up with a sore throat (you could definitely hear that my voice wasn't right) and said I apologize if I cough. Then I started. As soon as I said my name, I wanted to cry. WTH?! So, I said, "Sorry, it's hard to talk in front of so many people." And after that, I was fine.
One thing I want to say before you read my speech is that it was a very "cozy-like" feeling in the room. Everyone was sitting at big round tables (about 75 people). And as I spoke, I felt like they were part of it. They laughed when I wanted them to find what I said funny and they cried at other parts (I didn't necessarily want anyone to cry, although I did a little, too). Some things are still so hard to say out loud. And when I was telling them the Harlie-funnies, it was like I was talking to a big group of friends - they were laughing and saying things like, what?!, no way! and oh my gosh! It was really, really great. And I got to show some pictures on the screen, which totally makes a speech!
Anyway, here is what I said (sorry the font is all messed up because I cut and pasted, and now I can't fix it):
Hi. Hi. My name is Christy Holton and my husband and I have three children. Murphy is 10, Harlie is 7 and Cooper is 5. Yes, we had another child after Harlie. Might as well get it out there that according to most of my friends and family, I’m pretty crazy.
Anyway, Harlie was born with a handful of challenges. I always struggle with how to tell people about her, without it being overwhelming. In brief, she has three main “things”:
When I was 16 weeks pregnant, we learned through ultrasound about the first “thing” - there was a mass growing in her chest. This mass was preventing normal lung tissue from developing on her right side. To learn more about it and see what our options were, we were sent to Children’s National in DC.
It was there, at 22 weeks along, that we learned, about the second “thing” - she had some serious heart defects. Basically, her heart formed in a mirror image. So everything that was supposed to be on the right, was on the left, and vice versa. Her right ventricle was too small, and she had a large opening between her left and right ventricles.
The combination of these heart and lung defects left us with only a 5% chance of ever bringing her home. If she made it to delivery, she would need to have heart surgery within a few days of being born. We waited and hoped. We hoped that it wouldn’t be as bad as they were thinking. And we hoped that there wouldn’t be more “things” that couldn’t be detected prenatally.
I was induced in DC on Monday, September 25th, 2006, three weeks before her due date. As soon as she was born, I saw she didn’t have an ear on her left side. Something definitely looked different about her face. And she wasn’t crying. They took her away immediately. It wasn’t long before a doctor came in with a list of issues. I remember the casual way in which he told us that she would need a trach to live. She was in the OR at the time, getting intubated, because she couldn’t breathe. I remember thinking that I had never seen a baby with a trach before. Oh, how little I knew...
Later that day, we learned about the third “thing” - she has Goldenhar Syndrome. It’s an asymmetrical craniofacial syndrome. In her case, she’s missing her left ear, her left eye didn’t close properly, she had skin tags on both sides of her face, and her jaw was severely underdeveloped, which caused an upper airway obstruction. This did not allow for breathing through her mouth and nose. And since she couldn’t breathe, she certainly couldn’t eat by mouth, so she needed a g-tube. It took us a few years, but we eventually learned that she was hearing impaired, even in her good ear.
She spent her first 6 weeks in the hospital. We learned she had some spinal defects, too. She had her first open heart surgery when she was 4 days old. She remained intubated (and they wouldn’t let us hold her) until she got her trach and g-tube at 16 days old.
All total, Harlie’s had 40 surgeries so far. I’ll just hit the highlights.
She’s had 5 heart surgeries and has a pacemaker. After her second heart surgery, she had a chylothorax and spent more than two months in the hospital. And she’s had 7 heart caths. This is her at six months, after her second heart surgery.
When she was 4, she had spinal fusion surgery and spent weeks in a body cast. The bone graft they inserted in her back, died and caused an infection. She had a wound vac and underwent 4 debridements in 7 days. It was one of “our” worst recoveries ever.
In our quest to give her a better airway - one that does not require a trach, she has had 4 jaw reconstructions. The first two involved craniotomies and they harvested bone from her skull to put in her jaw. Both recoveries required her jaw to be wired shut for 10 weeks post-op. And in the second one the bone graft died, and left her with an infection that put her into cardiac arrest in the OR. Clearly, they were unsuccessful for decannulation.
Not ready to give up, we did more research and when she was five, we took her to Boston Children’s Hospital, where they harvested her fibula bone from her lower leg and created a jaw bone on her right side. That went great. And while she gained a lot of better oral function in swallowing and trying to talk, it still did not give her the airway she needed. So, last summer, they did jaw distraction surgery.
That’s where they essentially break the bone and put pins and rods on both sides of the breaks. We turned the pins each day, re-breaking the bone, which caused new bone to grow. We did that for 27 painful days.
This is the screwdriver-like tool we used to turn the pins.
And the pins are there, under her ears.
That was our most successful advancement and we believe she has a really good airway today.
Of course, nothing is ever simple for this girl, which brings me back to the first “thing” we learned about her - her lungs. So let me go back...
That chest mass that we found prenatally continued to grow and at 10 months old she had to have most of her right lung removed.
This allowed her to eventually come off oxygen and she did well for many years. Unfortunately, through a recent heart cath and CT scan, we learned that what is left of that right lung, does not have enough alveoli to produce enough oxygen for her growing body. While the rest of her right lung grew, it either didn’t grow normally, or what grew has been damaged through years of anesthesia, pneumonia, and atelectasis, leaving her dependant on supplemental oxygen for the foreseeable future.
It seems that the best way to deliver the oxygen is through her trach. So, after all we’ve done and all she’s been through, decannulation is off the table. For now, anyway.
I think it’s safe to say that her lungs are not going to carry her as far as we would like. And our next step is to see what we can do to give her the best life possible for as long as possible.
I know that sounds like a lot. And it is. But, I can tell you, without a doubt, that she is a very happy little girl.
And clearly, she knows how to relax.
She is very loved and she knows it. She now wears two different kinds of hearing aids and is hearing very well, which has really expanded her vocabulary. And every day she says more and more things that we can understand. She signs and she’s learning to read and write. She can count by 10s and 5s and she’s working on learning how to count money. Overall, she is really doing great. Which is amazing when you think of all she’s been through.
When I think of the past seven and a half years, I don’t know how we’ve all survived - Harlie included. I can tell you for a fact, that we couldn’t have done it without our home health nurses.
I remember being in the hospital before we brought Harlie home. They told us that we were going to need home health nursing. I was terrified! I actually said, no thanks! There was no way I was going to let some stranger in our home for any kind of child care. Every shaken baby story seems to be about a nanny in a private home. No thank you!
We brought her home November 2nd. I think I lasted less than a month. She was 24-hour care, no doubt. And my husband and I quickly realized we couldn’t keep up. After almost fatal trial and error, we learned that she could not sleep in her room upstairs. So, we moved her downstairs, into our living room. And we slept on the couch. We have a sectional, and he would sleep on one end, and me on the other. In thinking about those many months, I don’t know how we did it. It was harder than I could ever imagine or ever describe.
By December, I didn’t know how I was going to handle getting through Christmas. We had a two-year old son, after all, skipping it wasn’t an option. So, I broke down and called some nursing agencies, and one found a nurse for us. Leaving Harlie with her was so scary. And after only a few days, it was clear she was not the nurse for us. Harlie was on continuous feeding then. And when I returned home from Christmas shopping I found out she had not fed her the entire time I was gone. (here, I could hear, what? and oh my gosh! from the audience) I thought we were just going to have to go it alone and make it work, somehow.
During one of our first visits to the pediatrician, Harlie’s trach was a mess. So, the doctor called her nurse in and she was like ______ and voila! (the blank is where I made a hand motion to describe her "magic" of working with her trach) I said, whoa! How’d you do that? She told me that she used to be a home health nurse for a girl with a trach. I lit up when she told me that. I had known this nurse for years - since this was my son’s pediatrician, too - so she wasn’t a stranger! I begged her to come work with us. Every time we were there (which was a lot) I would ask her again. After I told her about what happened with that nurse, she finally gave in. I guess she felt sorry for us. Her first night was Christmas night, 2006. And seven and a half years later, Dawn is still one of our nurses.
She started working some nights for us. Just two nights a week allowed us to actually sleep in our own bed and gave us the energy we needed to get through. But, the writing was on the wall. I needed more help than that. Harlie was on continuous oxygen and continuous feeds. She had terrible reflux and vomited all the time. And she had an average of 3 to 4 doctor’s appointments per week. So, we started looking for another nurse. A friend of ours knew a nurse and sent her our way. We clicked instantly. She started in February of 2007, and Brandy is still with us today. All total, we have had seven nurses, and we were unhappy with only two of them. Not bad.
And for the girl who said “no thanks” to home health care nursing, I cannot imagine living without them.
Our nurses allow us to try and live as much of a normal life as we can. Tom and I go on as many date nights as possible. During the day, they have become my partners in managing Harlie’s health care. They help me come up with feeding and medicine schedules. They help me figure out what’s wrong, when I should stop and pay more attention to an ailment. They help me with ordering her supplies and calling in prescription refills. They allow me to focus on a conversation with a doctor during an appointment. They allow me to be a mom to my other children. They allow me to have a life. A life where I can have friends, go to the gym and run. Tom is a cyclist and I am currently training for my second marathon. I might have mentioned earlier that I’ve been told I’m pretty crazy.
You would think that with experience, I would get better at handling this life we’ve been given. But, I still find it challenging to manage. I forget a lot of things and I’m easily distracted. We’ve been ordering supplies almost every month for the past seven and a half years. You’d think I’d have it down pat. But, I don’t. It will be Friday (which is our delivery day) and I’ll realize we never ordered more oxygen tanks.
Our house is a crazy place, one of my favorite respiratory therapists has called it “organized chaos.” I think the “organized” is a bit of a stretch, but I certainly appreciate the encouragement. Cooper will be starting Kindergarten in the fall, so I’m hoping things will calm down at home while he’s there.
As hard as the last seven and half years have been, they’ve also been wonderful. While we have experienced the lowest of lows, we get the perks of experiencing the highest of highs. Literally, every day, Harlie amazes us with something she says, or does. Noteable recent events are when she bolus fed herself a can of pediasure. And just a few days ago, after being without nursing for a few days in a row, I jokingly said, “Harlie, you need to be suctioned, go do it.” And she did! She didn’t wash her hands first, and she touched the catheter like nobody’s business, but she did it. And she was so proud!
She’s a smart, funny, sweet girl, who complains so little. And our nurses love her and she loves them. They have become part of our family. And they have been an integral part of helping her live the best life possible.
Here, I ad libbed a bit. I looked up and said something like, "I don't know what all of you do for Pediatric Connection, but I can tell you that I feel like you are all on my team. If what you do helps someone else do their job better, which ultimately makes our life better, it matters.
So, thank you. Thank you for all you do to help us live this life.
For being understanding when I forget something or can’t remember what something is called.
For handling the paperwork, so I don’t have to see it. Or file it. Or do anything with it.
For delivering our supplies and packing the boxes accurately so I get everything I need.
For checking our equipment and making sure that the machines are working right and for replacing them, when they aren’t.
For coming to our house at all hours of the night because her heater won’t stop alarming or she needs a bigger oxygen concentrator.
For recruiting nurses to help families like mine, and for treating our current ones well so they stay happy while working here.
So many things you do makes our life better, even if you don’t always know it. And that’s a really big deal to me and to Harlie.
Thank you so much.
And they all started clapping and gave me a standing ovation! I was so moved! I was trying so hard not to cry. I think I was up there for about 15 minutes, give or take, and I didn't cough ONCE! Wow!
Then Mandy took the microphone and told everyone that they wanted to give Harlie a gift. The last time she was in the office she loved their giant giraffe.. here is the picture from that day...
So they gave her a huge stuffed giraffe, which was so, so sweet! And they gave me a t-shirt. It was a great experience, really.
After I left the room, they breaked for a few minutes and a bunch of people came out to give me a hug or meet me. It was so awesome. The owner said, "You could hear a pin drop in there, they were hanging on your every word!" I heard a lot of thank yous and such. It was so great.
And I felt SO much better. On the way home, Jamie told me that Harlie accidentally hit her toy she was holding (our neighbor, Adam, gave Cooper a large-ish tow truck that she has claimed as her own and she wanted to take it with her, so I let her). Anyway, the truck made some noises and Jamie said that Harlie was like, oops! and tried to find the speaker part to cover it to quiet it. What an amazing thing when a child can see that the room is quiet and she should be, too. Seriously. I am so darn proud of her!
I should have gotten some pictures, but I didn't think about it at the time. Darn it.
Anyway, that was it.
Now, today is the last day of school for Murphy. Harlie's "school" will continue. She is enrolled in summer school and her teacher will continue to come here for that. And I have arranged for more teachers to come this summer, too. She will technically be in second grade next year. But, I feel like the lines are getting all fuzzy and it's pretty hard to think of her academic future. As I see all the fun pictures of kids enjoying the end of school on Facebook, it definitely makes me sad that she misses out on so many of those normal experiences. But I have to stay focused on the fact that she is doing great and maturing and saying something new every day.
Just the other day, we were walking the dog and she pointed to the sky and said and signed something. Of course my mind went to all the normal things you might see in the sky. And whatever she was saying and signing didn't match. I finally had to stop the stroller and I asked her to sign it again. I had to disconnect my mind from her pointing to the sky and focus on the sign alone. She was signing "elephant." Ahhh... so I said, "Harlie, are you telling me that cloud looks like an elephant?" She said, "yes."
How many things does she think, but can't get out of that mind of hers? And how many things do I not understand?
And just a second ago, Jamie came in to ask me how many times I've exclaimed, "That's it!" when I'm upset with the kids. I answered, "thousands, of course." And she told me that Harlie kept on telling Cooper to "stop it!" when she finally said, "That's it!"
I enjoy every single moment of these new verbal outbursts. Every. Single. One.
Happy Summer Friends! And God Speed. I'm not sure
how we're going to survive, but I'm pretty sure we will.
Thanks!
Christy xo
