Wednesday, February 28, 2018

Post-Op Day 7

Hi. It has been a quiet day for the most part.

They were able to stop the Epi drip, so that is good news.

Her cultures grew something (can't remember what it was) that is not sensitive to Clindamycin. So, they had to add in a different antibiotic.

They have been suctioning and bagging her a lot.

They have added a Versed drip because her blood pressure would go up whenever they did anything to her, indicating she was in pain. And Versed helps you forget what's going on, just in case. I told them I could use a Versed drip, too. I'm sure that's not the first time they've heard that joke.

They are still planning on changing her trach to a longer one tomorrow. I have no idea what time that will be.  I don't understand, so it is impossible for me to explain it to you. But, there is a lot of "space" between where the trach goes into her neck, and where it enters her actual trachea, which leaves less tube secure in her trachea??? Maybe because of swelling? I don't know. And I'm pretty sure the trach is still stitched in place.  But, she's accidentally decanned before, while the trach ties were secure, by popping out from below.  I'm finding explaining this very difficult. 

Well, I suppose I'll get a better understanding after they go into the OR and get a better look at how everything healed/is healing. That has now changed from Monday to Tuesday, by the way.

That's really all I have for you today. I'm feeling a bit tired and just.... sad. Here's how she looks today...


Breaks my heart. I think her nurses feel the same way because they are so kind and gentle and sweet to her. I am so thankful for all who work so hard to help her.

Thank you for all the kind words of support, encouragement and love. We are soaking them in, trust me.

Much love,
Christy xo

Tuesday, February 27, 2018

Post-Op Day 6

Hi! Well, today wasn't so great.

At 5am, Harlie's trach came out. Her nurse had to hit the code button. I heard her sats went down to 18. That's really, really bad. Luckily, she has the ET tube as a back up, so they were able to bag her and attach the ventilator to that until ENT could get there.

Normally, anyone could put a trach back in. But, not in this case. ENT had to use a scope to visualize where it needed to go. She said something about two tracks, and she had to visualize the correct one.

In the process of putting it back in, I guess she could tell that her airway hasn't healed enough to go into the OR on Thursday as planned. Maybe because of what happened, it re-injured or something. At any rate, they are now planning on doing a trach change bedside on Thursday and putting in a longer trach, so that it doesn't come out as easily. I'm guessing it just needs more time to heal. And if that goes according to plan, then she will go into the OR on Monday.

I think they really want to get her off the paralytic as soon as possible. So, they want to switch her to sedation on Thursday after the trach change. If she starts to twitch, or move too much, they will give her bolus doses of the paralytic as needed. That's the plan, but it could certainly change.

They are thinking about giving her blood today.  They are still trying to wean her from the Epinephrine, and are hoping that a blood transfusion will help. The reason why they are trying to get her off the Epi is because it negatively affects the healing of wounds. It draws the blood to her vital organs, which limits how much her skin gets, basically.

I don't really know how to talk about how I feel about what happened today.  It is weird because I actually woke up at 5am, but eventually fell back asleep. It is awful to think about what was happening at that time, and I didn't know it.

I had called her nurse last night before bed to check on her. Her nurse told me that she remembered Harlie from years ago. She also told me that she's been at Children's for over 20 years. I heard that she was pretty shaken up after what happened this morning. I feel bad for her. But I'm very thankful that her and the team did what Harlie needed them to do. And I'm pretty sure that I'm glad I wasn't there when it happened.

My social worker came to talk to me after I got to the hospital. So, that was good. I really don't understand how she keeps surviving these close calls. We have come so close to losing her at least three times in the past six months alone (that we know of).

Right as my social worker was leaving, my friends Sally and Michelle showed up. So, that was good. They kept me distracted. We walked to go get lunch with wine, so that was great. And the sun came out today, so that was awesome, too!

I love this picture Sally took of us on our way back to the hospital after lunch. When I look at it, it looks just like it is just a regular day, hanging with my friends, and nothing to do with a hospital stay.

Oh, and I got a very pleasant surprise this morning as I was leaving the RMH to go to the hospital. As I was leaving the building, I saw a woman standing in the lobby area. So, I asked her if she needed help. I noticed a gift basket on the desk and asked her if she was delivering it.  She said yes, so I asked her to which room. She said she didn't know. So, I asked her the name, and she said Holton! I said, that's me! Turns out she grew up with Tom and his sisters, but She lives here in DC now. So, we talked for a few minutes and she asked me if I needed a ride. Since I wanted to hurry up and get to the hospital (they had just called me to tell me what happened) I totally took her up on her offer and had her drop me off a mile down the road in front of Starbucks. So, thank you Stacey and family! I'm so excited to dig into the basket tonight!


So, overall  Harlie is the same as yesterday, I think. Her swelling might be slightly better. I think her skin color looks a little better.


We had some funny conversations with her nurses and her respiratory therapist, Bruce (who I remember from when Harlie was a baby).


Thank you Sally and Michelle for spending the day with me!

I have a feeling some of you may be worried about me. But, I'm doing okay, all things considered. It is harder than words can express to see our sweet, funny, full of life little girl like this. And we miss her so, so much. And I am definitely worried about her and how close we seem to be getting to running out of options. But, I am not going to break down. I think I can promise you that. At least not while she's in the hospital. Once we get her home, that might be a different story.

Okay, I am back at the RMH and thought I was going to make a peanut butter and jelly sandwich for dinner, but when I walked in there was a group of people who brought chicken parmesan, salad and cookie/brownies. So, I had a hot dinner, which was another pleasant surprise.

I'm now doing laundry. I still don't have hot water, but I've been using the shower downstairs and that's been fine. They offered me a different room last night, but it has two twin beds instead of one full sized bed. I figure my sleep is more important than the inconvenience of having to go downstairs to shower, so I elected to stay.

I was just about to type, "Please pray that the hospital doesn't call me," when my phone rang and it was them! Oh geez!!! They were calling to get my consent for the blood transfusion. So, just another minor heart attack for me. Its all good. 

Thank you for thinking of us all. It really does help to know so many of you care about our sweet girl.

Much love,
Christy xoxo

Monday, February 26, 2018

Post-Op Day 5

Hi. So far, today has been a hard day for her.  She just looks terrible - worst so far. She is very swollen, especially her head, neck and face. Her eyes look very big, red and irritated. She's also spiked a few fevers. And she's been red and sweaty.


Opthamology has come by twice to look at her. They have added an antibiotic ointment to her regimen for superficial punctate keratitis (SPK), which, in simplest terms, is damage to her corneas. I think it is recoverable, so probably not a big deal.

Because of her swelling, they were concerned that there might be a blood clot in her neck. So, they wanted to do an ultrasound. To do that, they would need to remove her trach ties, which is very risky. So, they decided to schedule it at 4:30 today, so that ENT, wound care, respiratory therapy and the ultrasound tech could all be here at the same time.

You should've seen the ENT resident's face when the guy doing the ultrasound told him he was going to have to hold her trach while he did it. He looked so calm, but I felt like I knew what he was thinking. Then he asked him how long it would take. The guy told him about 10-15 minutes. I had to laugh to myself. That poor resident!  I'll give it to him, he went to the head of the bed and got comfy. I can promise you that I wouldn't want to do that! He ended up holding her trach for way longer than that as they got her all cleaned up and put some dressings on her skin and addressed some issues.

There's no clot, thank goodness. But she has some skin breakdown on her neck.


The combination of her Fontan physiology (the way her heart works), being on the ventilator, being on Epinephrine, and the paralytic, make for a very challenging situation. Each thing seems to exaserbate another. It feels pretty overwhelming from a parent's perspective.

Here's how she looked after an hour of working on her and cleaning her up.


ENT told me that they are planning on taking her into the OR on Thursday.  The goal is to take a look at her airway and see if it has healed enough to take the ET tube out of her nose and wake her up. The sooner she can come off the paralytic, the better (for her body). The attending doc told me this morning that they are having to increase all of her doses and that they were going to start Methadone today.

Today, my friend Meredyth came up to visit.


It was very good to have her here to distract me today, considering how bad Harlie looks. We talked, walked and got lunch, which was great. Thank you Meredyth!

I am about to head back to the Ronald McDonald House for the night. That will make for six miles of walking today! If only the sun would come out...

Thank you for all the continued love and support! Just can't tell you how much it means to us!

Much love,
Christy xo


Sunday, February 25, 2018

Post-Op Days 3 and 4

I wrote most of this post on Saturday, but didn't get to finish it until today (Sunday).

Post-Op Day 3

Today (Saturday) has been pretty quiet. Last night (Friday) , Interventional Radiology (IR) came and gave her a PICC line. They must've had a pretty busy day. They called Harlie's nurse, who we've had for three days now, and I think she's great. They tried to tell her that they just couldn't do it and that they would get to her Saturday morning. But Harlie was getting epi through a peripheral IV, which is risky. And her nurse didn't think the IV was going to make it till the morning.  So, they came and did it. I'm really so grateful for the care she's getting.

Her transfer to the dolphin bed last night (Friday) was pretty amazing to watch. Seriously impressive.

I had to leave when IR came to give her the PICC line because it is a procedure. Tom got to the hospital right about then and we headed out for dinner.

We were slow to get to the hospital this morning ( Saturday). Some days are just like that I guess.

All was okay with Harlie. Other than the fact that she has a few more accessories.





She's still on Epi, but they have started to wean her a little. They started TPN (nutrition intravenously). ENT comes to check on her a few times a day. And someone from opthamology came to check on her eyes, since she can't close them on her own right now. I think they said she has a small abrasion, so they want them to keep some ointment in her eyes and keep them taped shut. 

My family went on a birthday outing in Norfolk with my Dad, who just turned 90 years old!




Most of the time when I'm in the hospital with her, i just kind of go to a different place in my head.  But, I had a hard time yesterday. It is just hard to see her like this. And I miss her, the boys and dogs and home and all that jazz.

We had dinner plans with our friends Chris and Mona, who live in Arlington. So, I had that to look forward to. Although I was feeling nervous that I was on the sad side and wouldn't be able to shake it. But, Chris and Mona are so great and after just a few minutes, I felt like myself again.



Mona is cooking us a nice Korean dinner tomorrow night at their house, so that will be great, too!

Post-Op Day 4



It has been a quiet day for the most part. The PICC line that her Epi is being run through had an issue. They are moving her a lot to keep any pressure sores from developing. And after moving her, her Epi pump started alarming and her blood pressures dropped. Her line was occluded. So, they had to fiddle with that for a bit. Once they moved her to her back again, it worked. So, all is well again. But clearly, she still needs the Epi.

Earlier today she was making noise which sounded a little like snoring, I could tell the noise was coming from her mouth. I'm taking this as a good sign that air can get past everything and out her mouth. I'm feeling a little hopeful that when they wake her up, that she'll have more of a voice than before. That would be amazing.

Okay, that's all I have for today. Just not feeling much like writing. And luckily, things are pretty quiet.

Thanks for all the love!

Much love,
Christy xo

Friday, February 23, 2018

Post-Op Day 2

Hi! I'm going to start with last night. I was in my room at the Ronald McDonald House (RMH) when I got a call from the attending doc. He said that her blood pressures had dropped too low for their liking and the typical easier solutions weren't working to bring it up. So, they needed to give her a central line and an arterial line to be able to give her epinephrine. She also spiked a fever, so they took cultures and put her on a few antibiotics (vancomycin, clindamycin and ciprofloxacin, I think).

He said that they were going to put a central line through her femoral veins. So, I told him what I tell every doc who mentions her femoral veins - they are done, scarred down and too curly for access. He said he had already looked via ultrasound and he felt good about it. Okay, then. So, I gave consent over the phone.

They called me about an hour later and told me all went well.

This morning when I called in to check on her, her nurse told me that the central line was unsuccessful. Apparently it drew back once, and then was done. Shocker.

I got up and went to take a shower, and there was no hot water. 😐 There is hot water at the sink, just not in the shower. So, I had to wash at the sink, which is great fun, especially when you have long hair.  And I was chilly, so I pretty much shaved the skin off the top of all my goose bumps on my legs. Awesome. I stopped at the office on my way out and let them know about the hot water (or lack thereof) and he said he was going to call someone, but since it is Friday, it might be Monday before someone could come out. I asked if I could move to a different room, but they are full.

My friend Donna (Alex's mom) texted me and asked how things were going. Alex is still in the hospital in Richmond recovering from spinal fusion surgery on Tuesday. Anyway, I told her about the hot water issue and she said that would've made for a great episode in our special needs reality TV show.  She's so funny. I do love that we have such similar senses of humor. We can always make each other laugh.

The rain let up a little, so I decided to walk to the hospital (two miles away). The walk is really good for me. And halfway is a Starbucks, so I stopped and got some coffee. Since I felt like it was later than when I planned to arrive, I decided to go straight to her room to see if they had already rounded. Then I would go back down to get breakfast.

Luckily they were just about to round! I'm so glad I didn't stop for breakfast!

Edit: I am inserting this picture because when I post my blog on Facebook, the first picture in the post is shown, big as day. And the first picture was Harlie, but I was afraid not everyone could handle how she looks. So, here's a random picture from her room.


So, here's how she looks today. Gotta let people know she's a girly girl, despite her current state.


She's gotten lots of compliments on her Pug bow (Cooper's Christmas gift to her) and her toes. 


So, I'm trying to figure out how to brief you in simple terms, since there was a lot of info given during rounds...

Basically they are calling what happened last night, septic shock. And because they are still trying to get her balanced, she in a rescucitative state. And because of all that, she is not stable enough to move her to the special bed. The bed arrived last night (they had to order it from Baltimore). I'm guessing pressure sores aren't as common in kids.

But, luckily we knew to alert them ahead of time, so they have been proactive by putting a special padding on that area (where she got her last pressure sore - aka sacral ulcer). Her nurse has been checking her regularly and she said she looks good so far.

They had to stop her feeds because of her instability. She is positive on fluids (meaning she is fluid heavy) and that is because her capillaries (??) are leaking, which is a symptom of the septic shock (I think that's what she said). And she will remain on the paralytic. Her lungs look wet in her x-raysand her sats are low, so they increased oxygen and added in nitric oxide, which helps patients with her heart issues (Fontans).

They need to give her a PICC line (peripherally inserted central catheter) to give her the meds she needs (a regular IV can't handle what she needs) and to give her TPN (nutrition intravenously) since she can't be fed. But, interventional radiology has to do the PICC line and they are booked for the day. So, the attending (who is awesome, by the way) said he was going to work on that.

Rounds can be stressful, because it is hard to hear how many issues there are and how few options they have to fix them. Plus, some of the terms just sound scary (septic, rescucitative state). So, I asked him from an overall perspective, on a scale of 1 to 10, how concerned is he about her. And he said 4 (she came in at a 2). So, that's good. I told him I have to minimize things, so I need them to tell me when I need to get really concerned.

Even though I minimize, all of this is sounding exactly like what happened in Boston. So, I was just feeling yucky about it all. Then my nurse said I had visitors. Really? I wasn't expecting anyone. So, I went to go see who was here and it was my friends Carol and Sally!! How awesome is that?! It was perfect timing since I wasn't feeling so great.

Since I hadn't eaten breakfast yet, we went downstairs to get something from the cafeteria. But, it was closed. I don't get how they think parents can function on a regular mealtime schedule while their child is in the hospital! So, we walked to the restaurant where I had dinner last night. It is a one mile walk.


We had a great lunch, and then walked back in the rain. Luckily they stopped and got a bag that Tom packed for me, and he packed my raincoat. We hung out in the room until they had to leave.


They brought a giant balloon for Harlie.


And they brought snacks for me. Even remembered that I miss fresh fruit when we're in the hospital!


ENT came by and said they are working to get her scheduled for the OR to see how things look and see if they can pull the ET tube. Since she has shown she can't be sedated, they would rather not let her stay on the paralytic any more than absolutely necessary. So they are trying to see if they can fit her in on Thursday.  But, the only time is an afternoon slot, and they don't want  her to be a late case. Her ENT can't be here next Friday, so they might be forced to wait till Monday, March 5th, which will be 12 days. I'm nervous for them to rush it on the short side because it is so important that her airway heal as best as it can. I guess there are pros and cons both ways. We will just have to wait and see how it turns out.

So, it is 4:30, and her nurse just said that she's had a good day and that she's stable enough to be moved to the dolphin bed.  So that's great!

And Interventional Radiology came by and she said that they are going to come and give her a PICC line sometime between 5pm and 6pm.

And I just checked my email and got this from the RMH:

A plumber visited your room today and attempted to repair the hot water issue.  Unfortunately, the repair requires them to order parts and shut down water to the building.  They were not able to do so today. 

I’m not able to move you to a different room as the house is completely full (we have a waitlist at the moment).  There is a shower in the restroom near the main office on the 1st floor that I can offer for you until we are able to make the repair or move you to a different room. 

I know that this is not ideal and I’m very sorry for the inconvenience.  We will let you know as soon as we are able to make a change to your current room.

So, keep your fingers crossed that a room opens up or that the parts come in soon. Hard to complain when I'm lucky I have the room at all. At least there is a shower I can use in the building.

They are now working on figuring out how to safely transport her to the dolphin bed. Waiting on a board, I think. I'm told a lot of people will be involved since they cannot let that trach or ET tube come out.

Tom is going to come up after work, so that's good.

Overall, I think things are better than they were this morning.

It is now 5:37pm and they just moved her to the dolphin bed. Whew! That was pretty amazing to watch. Lots of people (11-12) and coordination. I tried to take pics but they do not do the room justice. I would have loved to have gotten a bird's eye view!






They are still getting her all settled in her new bed. Interventional Radiology hasn't gotten here yet. Or maybe they are waiting outside. I have to leave the room when they do that, so I think I might go see if the cafeteria is still open. 

Okay, I'll finish this one up for tonight. Thank you again for all your love and support! 

Much love to you all!
Christy xo

Thursday, February 22, 2018

Post-Op Day 1

Oh, I'd love to know how many times I've written "Post-Op Day 1."  Wait, maybe I wouldn't.

She got out of surgery sometime after 8pm last night. We were the last parents in the waiting room. Tom cracks me up and he posted this picture on Facebook last night...

$5 if you can guess who is still in the OR.

Dr. Preciado (her ENT) came out to let us know he was done and that he took the cartilage from her good ear. He doesn't think it will negatively affect her ear's appearance.

He closed up the stoma that was in the cricoid cartilage and remove as much scar tissue as he could. However, her skin was so tight, he had to leave some so he could close it. He said he can revise that down the road.

We had to check-in to the Ronald McDonald House before 9pm. Since it takes time to get her in her room and settled before they allow her to have visitors, we couldn't wait to see her. So we left, got checked in at the RMH and then went and got dinner.

On our way out of the restaurant, I had to laugh becuse our waitress said, "Have a great night!" Sure thing, Lady! So, I said, "Thanks, you too!"

Then we went back to the hospital  to see her. No matter how many times I see her a mess like this, it still takes my breath away for a minute.


Her nurse said that unfortunately they had to restrain her and give her a paralytic. She is a fighter.




We stayed for a while, answered a bunch of questions and asked about a special bed to help prevent pressure sores. Her nurse said it has already been ordered, but won't come till Thursday. Then we left to go back to the RMH, get me unpacked and get some rest. On our way there I remembered that I forgot my toothbrush and CVS was closed. I was pretty bummed about this. So, we got a freebie from the RMH. But, as I unpacked, I found my toothbrush! YAY! You have no idea how happy that made me. I'm still happy about it, and it is the next day!

But, our neighbor was up well past midnight very upset about the fact that someone didn't know their daughter's nurse's name. Her daughter is a baby (I learned that from information I overheard) and quite frankly, I think being mad about that seems a bit harsh. But, whatever. I think it was much more reasonable to be mad about the fact that I could hear her problems, but that she couldn't hear mine. And that both, her problems more so than mine, were keeping me from sleeping!

Okay, on to today, Post-Op Day 1...

Her eyes don't close all the way when she's out like this, so they are putting goo in them and they are now taped shut.


They have added a few meds and drips...


And she is still on a paralytic. She will remain on it throughout the day, I believe. They will reassess tomorrow, I think. This is what happened in Boston, and they ended up keeping her on it for 7 days. The team here said she requires such a high dose of sedation and she still moves her head (which is bad for her airway healing and stability).  We will just have to see what happens in the next couple of days.

They are trying to move her to try and prevent another pressure ulcer, but moving her is tricky with her fragile airway. The special bed still hasn't arrived.

They are going to start her feeds today. We'll see how that goes. I'm a little worried because when they tried that in Boston, her body just couldn't process it.

PT came to move her arms and legs.

They had to remove her earrings during the surgery last night. I asked the team this morning if we could put them back in. It seems like such a little thing. But if she woke up and found her ears had closed up, she would be very upset. They said yes, and when I went to put the left one in, it had already closed! I had to poke it through the bottom and it totally grossed me out. I think it was super weird to be doing something that she would've fought me over, but she couldn't.

Tom left this morning to go back to work. The area between the hospital and the Ronald McDonald House has changed a lot - for the better. There is a Barnes and Noble and a Starbucks and some cute places to eat about a mile away. So, I might venture out for lunch.

Okay, that's it for now. Hopefully the rest of the day and night will be uneventful.

Thank you so much for all the love and support! I know many of struggle with what to say to us. But, just know that letting us know you're thinking of us makes a positive difference in our spirits. So, thank you for that.

Much love,
Christy xo


Wednesday, February 21, 2018

Stoma Revision turns into an unplanned LTR.

Breaking news below...

They took Harlie back at 3:15. 

Waiting is exhausting, for Dad.
No worries, I got your back, Tom. 
In a good mood, even when hungry!


Brave girl says, "I love you" with a smile. 

Tom and I went to put Harlie's chair in the car and went to get coffee in the lobby. While waiting, the pager went off, calling us back to the surgical waiting area. That has never happened before. I left Tom waiting for our coffee, and I calmly returned to the waiting area with my heart beating out of my chest.

Got here and they just wanted to give me her hearing aids. Whew! But, way to give this mama with PTSD a heart attack! They told me that she was cracking them up in the OR and giving them all high fives. She is such a character.

So, for the breaking news...

Sometime after 5pm, her ENT came out and said he wanted to tell us what has happened so far. So far???

He said that he can see what happened and what he has to do. In the process of beginning the stoma revision, he discovered that the emergency trach (the one placed in Boston in August) was placed above her old stoma, and unfortunately through her cricoid cartilage (it isn't supposed to go there). This created a hole in her cricoid cartilage, which is a bad thing. Plus there was a ton of scar tissue. No wonder why she was having such a hard time with all things airway.

So, he needs to fill in that hole with new cartilage. He said he would try to take it from her ear. But, he hates to mess with her one good ear. So, he is going to try to take it from her bad ear. If her ears don't work, he will have to take it from her rib. That makes for a more painful and difficult recovery though. Plus, he said he would rather save her rib for a future surgery.  Yes, what I'm explaining to you, might very well have to be done AGAIN in the future.

What he's doing is basically an LTR (laryngotracheal reconstruction).  I think most of the time LTRs are done with a goal of decannulation (taking the trach out). Of course, we aren't there yet.

Unfortunately, her jaw is so small that he is unable to get a stent in her trachea through her mouth (which is clearly the typical way). The stent allows the cartilage graft to heal correctly (in the right shape). So, in her case, he has to be creative and do something he's never done before (but he's read about it in papers). They have to intubate her via her nose, and use the intubation tube as the stent. So, she will be intubated AND trached.

He will close her current stoma, and create a new one, in the correct place.  And she will have to be kept sedated for TWO WEEKS!!!!

TWO WEEKS!

When they took her back to the OR, Tom said that he was going to miss her. It is weird to see her, but not see her, for a week. But, now two weeks?!?! We miss her already.

He feels like this is a good plan and he feels like this will help. It certainly explains a lot. And it validates my decisions and difficulties with her trach changes. But, there are still no guarantees. He can't really tell us what to expect. There is a lot of scar tissue, and removing scar tissue can cause more scar tissue to grow.

He said that if he didn't do it, it could collapse/close up everything above her new trach site and take away her voice completely. That is just not something we can risk. So, we signed the consent form for the LTR. And we wait and hope and pray for the best.

At about 6ish, one of the docs came out to tell me that they had successfully intubated her via her nose, but that it was very difficult and took a lot of trouble shooting.

Seriously people. Are things ever going to be easier for her? It seems at every turn, things go the hard way. My brain feels overwhelmed. She is so freaking complicated. She is so freaking unique. It is nothing short of a thousand miracles that she is still with us.

Now I'm starting to think of all the pitfalls that lie ahead. She got that horrible pressure sore after just two days under sedation in Boston. I'm assuming they will have to give her a central line for nutrition (which got infected last time).

Ugh.

I've got my work cut out for me. As do all of her docs and nurses.

It is now 7pm and someone just came out to let us know that he is still working and that she is "fine." We are now the last parents in the waiting room.

Thank you so much for all your thoughts and prayers. We appreciate them more than you will ever know.

Much love,
Christy xoxo

Tuesday, February 20, 2018

Mabel

Hi!  So, our big good news around here is that we got a puppy!  She is a Pug and she is soooo cute!  We love her so much already!





After we got home from Boston back in September, Tom and I were talking about how things changed and how we were going to go forward.  We all lost a lot of freedom (that we all worked so hard to achieve) and it was hard to think about how we were going to adjust and make the most of things.  I said that we were just going to have to figure out a way to be happy, re-prioritize and focus on what we could do.  All easier said than done.

Then, on December 19th the breeder where we got Rooney posted on her Facebook page that one of her Pugs had puppies and there was a picture of them.


I took one look at that picture and immediately sent her a message asking her to add me to her waiting list.  The next day, Tom and I went for a walk and I told him that I did that.  He sighed heavily, and then said, "Okay, but let's not tell the kids and surprise them."  Done.  I love that we were on the same page with so little words spoken.  I had my argument all ready.  Harlie is home all day, everyday and she has so few friends.  Our freedom to travel is gone (did we ever really have it?).  And dogs are great therapy. But, I didn't need to say any of that. We have the same goal: find happiness anyway.  And her name is Mabel.

She was the runt of the litter.  And she is just the cutest thing!  It was hard to keep the secret from the kids (just because I wanted to talk about my excitement with everyone).  I thought for sure I was going to blow it, but I didn't.

On Saturday, February 10, we went to go get her.  The breeder is in Appomattox and it was about a two hour drive.  So, we told the kids we were going to visit an old friend.  They said, "Ok" and got in the car without a single question!  Geez!

As we pulled up the driveway, the kids immediately noticed a lot of Pug decorations.  When we went into her house, Cooper looked into the puppy room and said, "This is heaven!"  They still had no idea why we were there!  Tom had to tell them that we were going to take one home and they were in shock!  Cooper said skeptically, "Do we really get to take one home?"  Man, you play one April Fool's joke on a kid (years ago and not about a puppy) and they never let you forget it!

Harlie was the happiest, just look at her face!




Harlie's nurse, Brandy, got Mabel's brother for her family.  Her daughter has grown up with Rooney and had been begging for a Pug.  What better situation than to work and be able to bring your puppy to work with you every day?  She named him Morty.  He is a pound bigger than Mabel.  And they are adorable together!

Morty is on the left and Mabel is on the right.

Mabel and Morty were exposed to kennel cough from a vet visit right before they were due to come home.  So the breeder put the puppies on an antibiotic before the rest of them were symptomatic.  I think that really helped because she only coughed a few times over 24 hours and was done.  But, I never got Rooney vaccinated for that, so on Thursday when the breeder told me about it, I took him to the vet so he could vaccinated.  But, it takes a while for it to work.  So, on Saturday I asked a friend to keep Rooney until I could take Mabel to the vet on Monday.

She weighed in at 3 pounds, 1 ounce. To try and demonstrate how tiny she is (pictures dont do her justice), I put one of our guinea pigs next to her.


I had to laugh at myself, because as he was listening to her heart, I was holding my breath expecting him to say she had a problem.  But, he didn't and she doesn't.  Apparently I'm the one with the problem!  And he said that I could bring Rooney home!  Even though we were distracted by the new puppy, our house just wasn't the same without him!  So, we went to get him Monday night.  As soon as the kids saw him they all exclaimed, "Look how much he's grown!"  Haha!  After getting used to a 3 pound puppy, he did look like a giant!





I mentioned in a previous post that I had not been taking very many photos lately.  Well, that's changed.  I've probably taken a thousand in the last week!  Having three Pugs running around is so fun!  Rooney is so great with Mabel and Morty.  He's so tolerant of them and all their short bursts of crazy energy.  So many times I've asked myself why we waited this long to get another one.  But, I suppose things happen when they're supposed to happen.  We needed her now.  And we are so grateful to have her.

If she gets out of my sight, I know where to look for her - next to her food, in true Pug fashion.


Her first bath...


We love her so much!



Tomorrow we drive back to DC for her stoma revision surgery (in simplest of terms he is going to see if he can give her a new trach site).  She will be sedated for a week, until they can do the first "new" trach change.  It is surgery on her airway, and thus, has it's risks.  I am definitely nervous given what happened in Boston ("new" trach and sedated for a week sounds WAY too familiar).  But, I am trying to compartmentalize that because I don't have a choice and must go forward, despite my fears.

I am really hoping that when she wakes up, pictures of Mabel and the excitement of going home to her will be healing. 

I'll be writing while in DC and will try really hard to keep you updated.

Much love!
Christy xo





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