Weight Gain!

So, today we took the kids to get their flu shots. Murphy got his first "big boy" shot - in the arm! He did great. Harlie got hers and she has to get another one in one month. 

While there we went on ahead and weighed her. Drum roll please.... 17.8 pounds!!!!! I am so excited! And you can really tell, too. You can see it all over her body now. And I just can't tell you how good it feels to see some real fat on her bones!! So, it looks like the new feeding pump is doing the trick. I think I might start the transition to bolus feeding again this weekend. 2nd attempt. Hopefully it will go better than the first. 

So, after the appointment, I took Murphy to school. Then Brandy, me and Harlie went out for lunch. The waitress asked, "what's that thing on her neck?" I explained in the most brief form possible. Then she said, "well, when I had my daughter, they told me she was perfect. But I noticed she had a little spot around her eye. It was like a broken blood vessel. Now she has to wear glasses." 

Nice. Aren't people funny? 

Well, that's it. Just wanted to share the good news on her best weight gain EVER! 

Take care,
Christy

Happy Halloween!

I hope you all had a great Halloween. The neighborhood was packed with kids! I think Murphy had a good time. His little legs can only take so much. I tried to get him to go and get more candy, but he just wasn't that motivated. Darn it. He sure looked cute in his farmer costume though. We took more pics, but I'll upload them tomorrow.

Harlie is getting her first molar. Well, I guess I should say it came in. Well, that certainly explains her increased drooling. And, perhaps, the not-so-great oral feeding trials lately. She is doing great in physical therapy, though. She is finally putting weight on her legs. I took some pics and will get them up soon. It was so exciting to see her behind one of those push toys. I had no idea she was ready for that. Traci asked me if we had one that was Murphy's and I ran and got it. I am very hopeful that she'll be walking by the time she turns 2.

Well, tomorrow we have an appointment for both kids to get their flu shots. Then next week Harlie goes to see her eye doctor and surgeon. I am anxious to see how her eyesight is compared to last year at this time.

Well, more later. Thanks for checking in!

Take care,
Christy

Halloween Carnival

On Saturday, we had a neighborhood Halloween festival and then Murphy had his Halloween Carnival at his school. So we got the kids all dressed up and took some pictures. I just couldn't wait till Halloween to post them. 

My neighbors gave Harlie the Click Clack Moo, Cows that Type book for her birthday. Well, Murphy loves it so I convinced him that he wanted to be Farmer Brown so Harlie could be a pig. I figured this is the last year I'll be able to do that. I thought they looked so cute together. 

The parties were fun and Harlie did great. We hardly had to suction her. 

Everything is still going well here. Haven't had much to post, which is a nice change for us. Harlie has definitely mastered the "throwing things off the high chair" skill. She seems to do it with more attitude than I ever remember Murphy having. She is doing great in physical therapy. I really am starting to see a lot of progress. Traci is starting to teach her how to pivot while sitting, sit up on her knees, and crawling. We're still very far from crawling (not sure that she'll ever really do that since she doesn't have the mobility in her neck to look where she's going). But, who knows. Maybe she'll surprise us, as always. 

Well, this will be a quick one because we have to leave soon to go to Mike and Marcy's wedding. Should be fun! 

Take care,
Christy

First Year Stats

So, now that Harlie’s first year is behind us, I thought I would go back and gather some stats. And here they are:

127 days in the hospital (over 4 months)
88 doctor’s appointments (that’s just during the months she was NOT in the hospital – less than 8, which is an average of 3 per week)
7 surgeries
6 trips to the ER (felt like a lot more to tell you the truth)
2 ambulance rides (3 for me since I got a ride to DC before she was born)
1 helicopter ride
6 CT scans
2 Heart Caths
1 Million smiles

What a busy year! Looking back (which I try not to do in too much detail) I can’t believe we survived it. The first few months were definitely the roughest of our lives. And every day I thank God that they are behind us. WooHoo!

So, I finally got around to uploading the photos that Paige took right before Harlie’s birthday. Some of them are at the end of Harlie’s First Year Montage (under My Favorite Links). I think Paige did a fabulous job.

Well, just a short one for tonight.

Take care,
Christy

Nutritionist appointment

Well, we had OT and then we were off to see Anne, Harlie's nutritionist. Anne works with her pulmonologist, so everytime we see her, we see Pulm., too. The Pulm. doc we saw today was not her usual one - instead we saw the doc that we had when Harlie was at MCV for those 8 weeks in April and May. We also saw a resident that was in the PICU during that same time. He was doing his rotation with Pulm. this month. Small world. But nice to see some familiar faces. I liked them both a lot.

Anyway, they weighed her and measured her. I was very disappointed. She only weighed 15.9 pounds, and just last week she weighed 16.1. Not the direction we want to go in. And she wasn't really off her feeds for any large amount of time. Obviously for the surgery, but not enough to account for that difference.

I think that although her work of breathing is less - she still works harder than a healthy baby. And now she is way more active, so she's burning even more calories.

Anne told me not to be too discouraged. Overall, we are still making progress, even though it is SOOOO slow!!!! She gave me a feeding plan. Starting tomorrow, I need to increase her hourly volume. She will be fed for 3 hours, then off for 1 hour. We will repeat this all day. Then go back to continuous for the night. We keep her on this schedule for one week. Hopefully she will tolerate it okay.

Each week, the hourly volume increases and the time on the feeding decreases. It will probably take 6-8 weeks to make the transition to bolus feeds - if she tolerates it, of course.

Oh, Harlie has started to drop all her toys when in the highchair at dinner time. Murphy jumps up and goes and gets them. Before he can get back to his seat, she drops it again. He gets very frustrated. It is very funny. Last night, Harlie picked a toy up and very blatantly dropped it on the floor. Murphy yelled, "Harlie, did you do that on purpose?!" It was so funny. He looked at something today and said, "Mama, that is hysterical!" And he is very tuned in to the weather. He said, "Mama, it sure is cloudy out here." He really cracks me up.

Well, that's it for tonight. Oh, I also uploaded some pics from her last surgery.

Take care,
Christy

Short one

Well, just a quick one tonight. I think the past few weeks have caught up with me and I am feeling pretty exhausted.

So, I decided to cancel the anesthesia meeting for today. I have not completely decided if I will reschedule or cancel the entire thing. I remember reading on the Goldenhar support group that parents would say they were just too tired to go through another procedure. And I remember thinking that was crazy. Now, I completely understand.

Today we had physical therapy. Traci said that she feels that Harlie is definitely making progress. She can almost get into a sitting up position from a laying down position.

Tomorrow we have occupational therapy. Unfortunately with the craziness of the past few days, I have not been able to work with her on her oral feedings. So, hopefully, we haven't lost any ground.

Then after that, we go downtown to see her nutritionist. I love her and am looking forward to hear what she has to say about how Harlie is doing.

Well, that's it. Thanks for checking in and I will write more later and post some photos. I need to post the ones that Paige took and the ones from her last surgery.

Take care,
Christy

Busy week ahead

Well, everything is still going okay here. Harlie is doing well. She doesn't seem to be in any pain. She's still on room air and all's well. She is getting much more active in her sleep and gets tangled in all her cords and tubes. She seems to really want to sleep on her belly, but I think the trach mask gets in her way.

This week is going to be pretty busy. We have an appointment with the anesthesia team in Norfolk tomorrow. That appointment is for them to meet her so they can be prepared for the ABR (auditory brain stem response) test that is scheduled for October 23rd.

Then on Tuesday, we meet with Harlie's nutritionist. I think the plan is to see how we can change from her 21-hour continuous feeding schedule to a more "normal" feeding schedule. A meal is called a bolus feed - and Harlie hasn't had a bolus feeding since... geez. I don't remember. Probably January.

As of right now, we don't have any appointments for Wednesday. Whew.

Then, on Thursday, we go see her cardiologist here at MCV.

On Friday, we have a follow-up appointment with her surgeon in DC so he can take a look and make sure everything is healing fine.

So, we came home from DC on Friday, then we'll have to get back in the car on Monday to go to Norfolk, then back to DC on Friday. So, for that reason I am thinking about cancelling the ABR test and the anesthesia meeting tomorrow. After thinking about it more, I just don't see the hurry in getting the ABR done. And I really think she deserves some time off, having fun, being a baby. I guess I'll sleep on it tonight and make my decision in the morning.

Well, that's about it. Hope all is well.

Take care,
Christy

We're Home!

Ahhhh, home again. Such a good feeling. We got on the road at 1:30 - but hit a ton of traffic. I really don't know how people commute.

Harlie is doing well. I'm sure she's just as happy to be here as I am. Although, the next time we have a hospital stay in DC, it will be much better. The new wing opens in November and it sounds really nice. The cardiac department is moving to the new space, so that will mean that we'll be there at some point.

All the rooms are private, with private baths AND showers!!! (right now I go down the hall to a locker room with some showers) They will all have flat screen tvs, with internet access, and new, more comfortable furniture. I am thrilled about the internet access - and I think it's through the tv. I might just enjoy our next stay. Although, I have to say, I am really starting to get to know a lot of people at the hospital, so it's not that bad, really. It almost feels like a reunion.

Well, that's it for tonight. Thanks for your support!

Take care,
Christy

Still at the hospital

Well, unfortunately they weren't comfortable with discharging us yesterday. I wasn't that surprised. And Harlie was really tired yesterday, slept most of the day and all night. And she had a fever. They said normal reaction to surgery, so nothing to be alarmed about. They gave her some Tylenol and it came down soon after that. So, maybe the trip home would have been too much for her. It's always better if I can make myself believe that I like all the decisions made by the docs.

So, I've been told that they will do rounds on us around 10am and that the team will make the decision then. I can't imagine it would be anything but sending us home.

I think Harlie is really wising up to this hospital stuff. She has cried everytime someone has come in the room. And that is so NOT like her! I'm sure that once I get her home in her familiar surroundings, she'll be happy again.

Well, hopefully the next time I update this site it will be from home. Thank you for all the messages - I appreciate each and every one!!!!

Take care,
Christy

Surgery Update

Hi everyone,

Well, I was finally able to make it to the library. She is out of surgery and is back in her room on the Heart and Kidney Unit. We have gotten to know so many nurses now, that we feel pretty comfortable. Somehow we got lucky and got a private room. Loving that.

Surgery went fine. And her surgeon said that if it were up to him, he would discharge us today. But, it will be up to cardiology and I haven't spoken to anyone yet about that. But I am really hoping that they will let us go tonight. She is already back on room air with sats in the high 80's, which is incredible (incredibly good, I mean). For the past 3 nights in a row she has not needed oxygen. WOW!!!!! I woke up several times last night and peeked at the monitor - 89 sats. Unbelieveable - especially considering she was sleeping, and typically sats drop when you're sleeping.

As far as the surgery goes, things went well, I think. Her muscles appear to work okay and she looks more "normal" there now. He said that we may want to do another surgery in a few years, but we'll cross that bridge then. She'll probably always have some issues in that department, but I think they'll be livable in the grand scheme of things.

I'll write more about it later. I just wanted to give you a quick update. Need to get back to her room just in case cardiology comes by. Doctors always seem to know when you've just stepped out.

Thank you for all your well wishes!!!

Take care,
Christy

Here we go again...

So, tomorrow we go to DC for Harlie's anoplasty. I don't know if I said or not, but it is going to be her 7th surgery. The surgery itself is scheduled for 11am on Thursday. But we need to be at the hospital at 4pm on Wednesday.

Although I am looking forward to getting this issue addressed, and crossed off her list, I am not looking forward to being back in the hospital. I absolutely hate the search for a vein for an IV.

They take that blue tourniquet and tie it around each limb, one at a time, searching for the best vein. Then, after searching both arms and legs, they go back to the one that they thought was the best. I feel so bad for the person that is the "best" at this job. Because then they get called for every hard stick. And now that Harlie is getting older, she really looks at the person who is inflicting the pain.

Well, enough of that. Oh, I forgot to tell you that during our car trip up to DC this past weekend, Murphy said, "Daddy, is it partly cloudy?" Clearly, they are learning about the weather at school. It was so funny.

Well, I won't be able to update the site Wednesday night. So, if there's anything to report on, I'll have Tom do it. Then on Thursday, I'll update the site after she goes into surgery. Well, wish us luck!

Thanks and take care,
Christy

Went to the zoo

Well, on Friday we went to see an ENT in Newport News (his main office is at CHKD in Norfolk). The reason why we went to see him is because I was told by Harlie's ENT in DC that we should also see someone who is part of her craniofacial team about ear reconstruction. He was recommended by Dr. Magee. I liked how he opened, "So, I see you need some more doctors." I love funny people. He spent a lot of time with us explaining everything. Basically, it comes down to this:

1. We need to test to see if she has the inner workings and ability to hear on her left side. The test is called an Auditory Brain Stem Response (ABR) test.

2. If the test shows complete hearing loss, then all we will need to focus on is ear reconstruction.

3. If the test shows that she has some hearing capability, then we need to determine how much and what we want to do about it.

He does not recommend ear canal construction (actually giving her a canal). He said that the path is never "normal" and the risk to hitting a nerve and causing facial paralysis is too high.

He prefers a Bone Anchored Hearing Aid (BAHA). The hearing aid is drilled into the bone above the ear.

As far as the actual ear building - he always sends parents to see a guy in Northern VA to talk about a prosthetic ear first before considering reconstructive surgery. He used to be a CIA disguise specialist. Pretty interesting, huh? But, we have plenty of time before we'll be looking into all that.

We also discussed her future jaw reconstruction surgery. He explained why it is so complicated. Especially with her missing some bones on the right side of her jaw. But, I will not think about this until I speak to Dr. Magee since he's the one that will be doing that.

So, as of right now, her ABR test is scheduled for October 23rd at the children's hospital in Norfolk. We will get the results immediately, which will be nice. Hopefully she wouldn't even have to stay overnight. But, with Harlie and anesthesia, I won't count on it.

So, enough medical stuff for now.

On Saturday, we (Tom, Murphy, Harlie and I) went to DC to the zoo. The Children's Hospital's Heart Institute sponsored an event there.

On our way up, I sat in the back between Murphy and Harlie. I do not recommend this. Especially for long trips. It took only a matter of minutes till I had regressed into a child myself.

"Murphy, stop touching my seat belt."

"Sorry, Mama." lots of laughter.

"Murphy, stop touching my seat belt."

"Sorry, Mama." lots of laughter.

"MURPHY! I SAID STOP TOUCHING MY SEATBELT!"

"Sorry, Mama." lots of laughter.

"YOU TWO, KNOCK IT OFF!" (that was Tom)

And while all that was happening, Harlie kept taking off her HME (the barrel thing that covers her trach). Literally, every 2 seconds. So, I keep saying, "No, Harlie!" To which she just smiles and laughs. And I have to put it back. Over and over again. I really don't know how I am ever going to discipline that child.

But we made it up there in one piece. And the weather was perfect. It was so nice to get Harlie outside. She kept on swinging her legs off the end of the stroller. It was really cute. And it was really nice to see our social worker (Kristen) and some of Harlie's nurses, and doctors. Especially since she is doing so well now. And it was good to meet other heart families as well.

Well, they had a raffle and they gave a lot of goodies away. And if you can believe this, we won the grand prize - a week's vacation in Myrtle Beach. So, now we HAVE to take a vacation! We are already looking forward to it. Funny, because I was really bummed we couldn't take a vacation this past summer.

So, then we leave. Get to our car, and we have a flat tire. Tom said there isn't just one nail in it - there are two! Funny how things balance out sometimes.

Well, that's it for tonight. Talk to you soon!

Take care,
Christy

One year checkup

Well, today we went to our very first "well check" with the pediatrician - for her 1-year check up. She got four shots and she weighed in at 16 pounds, 1 ounce. But she feels so much bigger than that! I really hope she starts gaining more weight soon. We have to keep her rear-facing in the car seat until she's 20 pounds.

Tomorrow we have physical therapy and then we have to jump in the car and go to Newport News for an appointment with an ENT. He was recommended by Dr. Magee (her plastic surgeon). We will talk about her left ear (the one with no canal). So far, I haven't spoken to anyone about that ear. So, I'm anxious to learn more about what we can do, if anything.

I forgot to tell you that on Harlie's birthday, after Tom got home from work, we (the four of us) went out to dinner and then went to Build-a-Bear. There is a "champion" bear that has patches and stitches on it (from surgeries I assume). So, we got that one for Harlie with the doctor's scrubs outfit. And when we got home, I performed a tracheostomy on him. haha I'll take a picture of him and post it soon.

Murphy loved getting his "bear". He picked out the dinosaur (shocking, I know). And he loved the whole process. It was really nice to go out as a family and we all had a great time.

Oh, I found out that Harlie's surgery has been re-scheduled for Thursday, October 4th. A lot of people have asked how I kept my cool about the whole situation. But, I think I've been conditioned over the past year and a half to know that things happen - and not always the way you want them to. And I don't have the energy to waste on anger (and it would have been mis-directed as the ones I was speaking to had nothing to do with what happened). And really, it was laughable. Nothing has come easy to Harlie. So, I wasn't that surprised, really. And my mom and I had some good talks in the car on the way up and on the way back, so that was nice. I prefer comedy to drama - and it gets me through. Now, that's not to say that I can't get angry and speak my mind. You should have heard me when I spoke to that other nutritionist - the one that never returned my calls. Now, then I did get angry and I let the person who was responsible know it. But, thankfully, that hasn't had to happen much.

Well, I'll let you know how the ENT appointment goes. Talk to you later!

Take care,
Christy

Happy Birthday Harlie

What a difference a year makes. What we felt one year ago today, is so completely different than what we feel today. And thank heavens for that.

I think of what it was like the hours, days, and months before Harlie was born. I had no idea of all the things to be afraid of. Or of all the things to be thankful for. Who knew that we take breathing for granted? I mean everyone does it, right?

I remember the day she was born so clearly. I don't know how we got through it. Or the next day. Or the one after that. It was terrible. It took months till things got "better".

And I am much more open about things now.

Like, for example, just hours after Harlie was born, and I was able to make the trip across the street to see her. (I remember thinking I shouldn't be dressed and outside, I JUST had a baby!) They wheeled me to the PICU and she was in the first room on the left and there were a lot of people in there working on her. It was very scary. And, of course, we were all crying (me, Tom, my mom and my sister). One of the genetic doctors came up to me and said, "I know, she is frightening to look at." It seems like a harsh thing to say to a mother. But, she was right. And that is exactly what I was thinking at the time. To tell you the truth, it kind of made me feel better. At least I didn't have to feel guilty for thinking that on top of everything else I was feeling.

But look at Harlie now. And look at me now. Our life is certainly not what the average person would call "normal". But our life is normal to us. And that, in itself, is an accomplishment as far as I'm concerned.

I can't believe I'm going to write this. And Harlie's OT is going to love it (and by that I mean, she'll say, "I told you so."). But, a few weeks ago her and I got into a deep conversation about Harlie and special needs kids in general. She said that she knows a mother of a child who says that looking back, she wouldn't have it any other way. I said, "No WAY am I ever going to feel that way." I probably said that was BS, too. And I MIGHT have said she's just saying that to make herself feel better.

But spending the last few days thinking about this past year...well, maybe I am starting to see what she means. If Harlie and my family didn't have work so darn hard for every "little" thing that most people never even think about...how would I have ever felt the joy and happiness I felt when she sat up for the first time? Or when we went one week without oxygen? Or when I heard a faint "waa" the last time I changed her trach? Or - dare I dream - of the day I will hear her sweet little voice and her sweet little laugh.

I will never be glad of all the obstacles she will have to overcome. Never. But I guess, in time, they will make us who we are supposed to be. And how will we ever be able to think of us in any other way?

Yes, this year has been quite the roller coaster of emotions. But I am happier today than I have been in a long time. I am proud of my little girl, my son, my husband and myself. And I am so incredibly thankful.

Happy Birthday sweet girl.

And thank you - to everyone who supported us and stuck by us this year. For the dinners, the hospital visits, the phone calls, the cards, the prayers, the donations, the gifts, the hugs, the talks, the encouragement, the messages, and most importantly, your time. Thank you.

No Surgery Today

UPDATE - I added the video montage of Harlie's First Year to My Favorite Links. Check it out when you get a chance, and don't forget to turn the sound on.

Where to start?

So, we pack, we load, we drive, we sit in traffic, we stop for food, we arrive at Children’s at 8:30pm. I remember that you have to check-in at the Ronald McDonald House (or Ronald Donald House according to Murphy) by 9pm because the person working closes the desk for the night. So, I tell my mom to just drop us off so she can go. So, I load the stroller (with 7 bags AND Harlie) and go on up to check in as previously instructed.

“I’m sorry ma’am, what is your baby’s name? And why are you here?”

She picks up the phone and makes a call.

“Who is the doctor?” More talking into the phone.

“What is the first name of the doctor?”

It was at this point that I said, "uh-oh".

I gave them the phone number of the person that called me and gave me the very simple and clear instructions to come to the hospital. (yes, I had it memorized – very scary considering I only called it once)

Harlie and I sat in the ER for a long time. Fun, when you're holding a now squirmy baby (I really am happy about the squirmy part - I love that she wants to explore her surroundings now - but she does wear you out!). The charge nurse came over to me and told me that they tried paging the surgeon, but he didn’t answer. “He’s on vacation”, she says. "But he’ll be here tomorrow." So, if he has surgery in the morning, shouldn’t he be at home tonight? I mean, when I worked, and I went on vacation, typically I came home the night before. Right? So, she tells me that she’s called the resident and she’s going to admit us. And she’ll be “right” back.

What really got me was the way they acted towards me. Like I had my information wrong. I spoke to someone about my insurance. I spoke with an anesthesiologist and then the nurse about coming up. And the charge nurse tells me “this is a teaching facility, there are a lot of people involved”. I wanted to open up my notebook and show her just how many people are involved.

So, we continue to sit in the ER. A guy vomited all over the place. The woman that was with him said “See what I have to put up with?” to anyone who would listen. It was lovely. So I got up and told the people that I already spoke to that maybe I should just go home. So, they finally sent me to Admissions.

The lady there was very nice. She said that they were putting us in room such and such. “What service is that under?”, I ask. Neurology and Orthopedics. Huh? That’s the only place they have an open room.

So, here’s what I’m thinking… someone wanted Harlie to be there the night before – for a reason. Trust me on this – insurance will not pay if it isn’t completely necessary (and even then sometimes they don’t pay). So, I can only assume that because she’s having surgery on her bum, that her bowels need to be emptied. And that means she needs some sort of pre-surgery treatment, which is what necessitates her to be admitted the night before. Right? Makes sense to me.

Well, at this point, no one knows what needs to be done. And it is now 11pm and it isn’t happening, which leads me to the conclusion that surgery isn’t happening as scheduled. So, I ask, “Is she even on the OR schedule?” Yes, at 8:30am. So, two surgical residents come down to talk to me. Very nice. Very apologetic. They don’t know about the pre-treatment, but they agree with my thinking. I mention the 8:30am surgery time and one of them looks at the other and says, “I didn’t think it was that early, but I’m not sure.”

And that’s when I said, “I’m done.”

I told them that I need to feel comfortable about this, and this whole night was just not working out. And now that I’m filled with doubt… I would rather go back home and start this all over another time. As I was walking down the hall towards Admissions, I looked at Harlie and she gave me a big smile. If there is one thing I’ve learned since having her, it is to trust my instincts. So that’s what I did. When I come up for my daughter’s 7th surgery, I want them to say, “Hi Mrs. Holton, sign here, walk this way, here’s what’s going to happen and when, etc.”

So, at 11:15pm I call my mom and tell her what happened. She has to get dressed, packed, get the room ready to check out (it isn’t like a hotel where they come and clean it, you have to remove the sheets, etc.). Luckily the person was still awake so my mom got to check out. Then she came to get us. So, we pack, we load, we drive, we get home at 2am.

Check out my pics from our “trip”.

Take care,
Christy

PS - I added the video montage to My Favorite Links - don't forget to turn the sound on!

Harlie's Birthday Party

Well, yesterday we had Harlie's birthday party. It was a lot of fun. She did great. I have been working on a montage of her first year and we showed it during the party. I wanted to upload it so everyone could see it, but the site is doing maintenance so I can't upload anything right now. Hopefully, Tom will be able to upload it for me while I'm gone.

Speaking of, I am about to walk out the door to drive up to DC. Tom and I took Murphy to the bar to watch the Steeler's game (Brandy stayed with Harlie). When I got home a nurse from Children's called to say that we were supposed to be already checked in by now! Ugh! Thanks for the notice! I guess because of the nature of the surgery (by the way it's called an anoplasty) they might need to give her some special meds or something the night before.

So, we hurried up and packed and are about to jump in the car. Unfortunately, Tom can't go with us. Thankfully, now that my mom is retired she is more available so she's going with me. I will update the site as soon as I can. We are really hoping that this will be an "easy" surgery for her and that we'll be home very quickly. Hopefully going into it healthy will help a lot. I can't wait till Dr. Sandler sees her. (he did her lung surgery) I'm sure he'll notice how much better she is.

Well, gotta run. Thank you for all your support!!!

Take care,
Christy

Birthday Party coming up...

So, everything is still going great here. We've had a few busy days, but certainly not like it was. It has been 3 weeks since we've been to the pediatrician - a record for us since the beginning! We have made so many records this month. The longest without antibiotics, the longest on room air, the longest between appointments, the longest without vomiting, etc. I am so glad that we get to go into her birthday celebration on such a high note.

I haven't heard what time her surgery is on Monday. They told me that they would call me Friday or Sunday. It looks like it will be Sunday. This will be the first time that she will go into a surgery "healthy". Hopefully it will speed up her recovery and get us back home on her birthday (Tuesday).

Tomorrow is her birthday party. So hard to believe. So many times I didn't think it would ever come. It is funny because most of the time you think that time goes by so quickly. But, honestly, this year was, by far, the longest of my life. I certainly don't want to wish time away, but I am looking forward to so many things.

Well, I will stop my deep thoughts for now. More later!

Thank you for checking in! Take care,
Christy

Still on room air!

Hi everybody,

It is very weird to not have anything much to report on. Wonderfully weird, that is. Things are still going great. Still on room air and definitely we broke the record. This is the longest she's ever been on room air!

I tell you - she is a different baby now. I listen to her lungs every night before giving her her Pulmicort breathing treatment. Tonight, she sounded completely clear - no squeeks AT ALL!

And now that she's sitting up all the time, she has hardly spit up at all. Now that she is healthier than she has ever been, and no more vomiting, I can tell she is getting more plump. I keep on thinking that when I put her on the scale (we have a baby scale) that she's going to weigh 16 pounds, but still NO! Ugh! We meet with her nutritionist in a couple of weeks.

We have a few appointments coming up - but I can definitely tell that things are settling down. We will see orthopedics in November, and plastic surgery (Dr. Magee) in December. Once we get past her surgery on Monday, it looks like her surgery calendar is clear until her heart surgery. WooHoo!!! So, I think we can start to address her craniofacial issues. And to give me more support, her DC cardiologist said that her current heart/circulation is more forgiving than what it will be after the Fontan. So, if she needs surgery elsewhere, now's the time to do it. So, hopefully Dr. Magee will have a plan of action.

Oh, we (Brandy and I) took Harlie to Saxon Shoes for her first pair of shoes. She needs them to wear in her stander. They are so tiny. The only ones that come in a small enough size are the classic white ones. So cute! And it is so nice to be able to take her out! I am loving it!

Well, that's it for now. Thanks for checking in!

Take care,
Christy

PS, Photos of our trip to the playground are now on the site.

Next surgery quickly approaching...

First things first - things have been going GREAT! I can't tell you how happy I have been lately. She is still on room air - 5 straight days now. I think we are approaching a record for the longest stretch on room air. And to make things even more amazing, we haven't even had to turn on the oxygen concentrator for her naps. She has been able to maintain her best sats ever - even while sleeping!

They want her to be between 75% and 85%. (a normal, healthy person should be close to 100%) Too high sats for too long would be bad for her lungs. And yet she has been as high as 92% while awake. That's CRAZY!

Last week, Brandy had some time off during the week. So, I had to take Harlie with me to take Murphy to school. I just can't tell you how great it felt to be able to carry her in with us! Such a small thing that most people never, ever think about. Much less appreciate and downright ENJOY! And it made my week!!! We definitely got some stares, but I don't think they were bad ones. Just curious I think. I think the helmet stands out. So, it didn't bother me at all.

Murphy's teachers were very nice and enjoyed meeting her. And oh, by the way, Murphy is LOVING his new school. I picked him up on Friday and he looked at me, and got these huge tears in his eyes and said he didn't want to go home. I couldn't believe it. He has never done that before. He made pudding in his cooking class the other day. I can't really blame him for not wanting to come home.

My friend, Melissa, and her two girls, Abby and Isabella came up for the weekend. We took all the kids (including Harlie) for a walk to the pond to feed the ducks and then to the playground. While at the playground I put Harlie in the bucket swing. She LOVED it! She kicked her little feet and held on to the chain. I wish I had thought to take the camera. But I just didn't realize I'd be doing that. It didn't occur to me until we got there. I'll be getting some pics soon though.

We have really been enjoying our little break from so many doctor's appointments. But, unfortunately, we are looking at her next surgery already. I got the call on Friday that she has surgery on September 24th - the day before her first birthday. This is a time sensitive surgery that really should have been done months ago (unfortunately, due to her other issues, it just never made it to the top of the priority list).

This surgery is to correct her anoperineal fistula (we call it her butt reconstruction). Her anus is located too close to her girly parts, and not in the middle of the muscle like it should be. So, somehow, the surgeon will move the opening to be in the middle of the muscle (which luckily, is in the right place). This has been explained to me on several occasions - and I still do not get it. Maybe it just feels so weird and uncomfortable to be talking about this area, complete with diagrams and pictures, with this man I just met, that I simply stop listening. I have determined that I really don't care, I just want him to fix her and make everything work the way it should. He tells us that she should only be in the hospital for a day or two. I am anxious for him to see her again though. He is the same surgeon that operated on her lung just a few weeks ago.

Well, I think this has gotten to be long enough. More tomorrow!

Take care,
Christy

NO OXYGEN TODAY!

What a great week it has been! Yesterday she was off O2 for a good while. And today, she was off the O2 for ALL her waking hours! (We just turn it on when she's sleeping.) We are so thrilled!

It was so great to go to her helmet appointment today without the O2 on our shoulder. (Of course we keep it in the car.) But one less bag, tube, etc. makes a huge difference. Especially this one!

Anyway, her helmet wearing is going well. I think this is the first time that we were able to wait 2 weeks between appointments. Usually we have to go every week.

And she is back on regular ol' formula now (high calorie of course) and today, she managed to keep it ALL down!!! WooHoo!!!

So, just wanted to share all the good news from here. It is nice to have nothing to report but good stuff!

Take care,
Christy

Harlie's First Photo Shoot

Today was a very good day, I think. Harlie has been down to next-to-nothing on the O2. We were able to keep her under a half of a liter all day. And, if you can believe it, we were able to take her off for the photos!

Well, I think Paige got some good ones and I can't wait to see them. I love how she finds cool backgrounds just anywhere. Like on the floor in my dining room. I never would have thought of that.

And I can’t believe how cooperative Harlie was. She was in such a good mood. If she didn’t have all her medical issues, she would be the easiest baby ever. She really has such an easy going personality. It amazes me every day how happy she is.

We had physical therapy again today. Traci put her in her stander again. And Harlie did much better today. She spent a good while in there – not smiling, but not crying either. So that’s something. I’ll attach some photos soon. I will try playing a video for her to see if that helps (thanks Lucy! – even though you’re a cheesehead, with a lot of hair.) I know a certain someone, named Todd, that is a Packer fan and he joined the Steeler Fan Club yesterday. Pretty funny.

Well, just a short one for tonight. Thanks for checking in.

Take care,
Christy

Are you ready for some football?!

So, football season is here! I love football season. I love that it is going to get cooler (mostly so we can take Harlie out more). I love the game and how football brings people together. Sitting around, watching the games, eating, drinking, and laughing. It’s such a fun season. And last year, I didn’t get to enjoy any of it. So, hopefully this year will be different.

The Steelers won their first game today. And from what I do remember about last year’s season, that’s an improvement. For those of you that don’t know, Tom is president of a Steeler fan club that meets at the Playing Field to watch the games. And they raise money to donate to the Children’s Hospital here in Richmond. Hopefully, it will be a good season.

Well, on Friday we had physical therapy. Harlie got her stander and they made all the adjustments for her. The stander is a piece of equipment that she gets strapped into in a standing position. It forces her to put weight on her legs. It has a tray in front so she can play with toys and there is a basin too, so she can splash her hands in water. I have to say that so far, she doesn't love it. Hopefully, after a few tries, she'll get more comfortable.

We are really enjoying her sitting up. She isn't completely stable yet, but she's learning. She definitely tries to keep from falling over, but her hands aren't that fast yet.

Tomorrow we are getting Harlie's first professional photographs done. Paige Stevens Buchbinder is coming over to our house to take them for us so we don't have to take her out. Paige did our wedding and a bunch of family photos for us. I think she's great. Here's her website: http://www.picturepaiges.com in case you’re interested. It's hard to believe that she's almost one, and these will be her first real photos. She’s such a busy baby!

Well, that’s it for tonight. I’ll let you know how the photo shoot goes. I hope you are all well, and I’ll talk to you later.

Take care,
Christy

Quick Update

Sorry I haven't been so good at updating the website recently. Just been trying to get back in the swing of things. We had PT on Wednesday and will have it again this morning. We had OT yesterday. That went okay, all things considered. No swallowing yet, but only trying to get her used to food in her mouth and making it fun for her for now. No wild and crazy goals yet. She has no notion of hunger, food, etc., so there's no incentive for her. We just have to have a LOT of patience with the oral trials.

I'm still thinking over what the GI doc said. He is recommending a nissen fundoplication (where they take part of the stomach and wrap it around the esophagus to make it "impossible" for her to throw up). Sometimes they come unwrapped, soon after surgery, or years later. He's also recommending a pyloroplasty, which is when they widen the opening from the stomach to the intestines so the food empties faster.

I'm still mulling all this info over. I have a few issues. One is we don't have proof that she's aspirating. And that would be the main reason for doing these procedures. Fear of aspiration due to reflux, need to keep her lungs healthy, etc. Plus, she is so close to being upright most of the day. And that will really help her keep her food down I think. Since babies typically outgrow reflux, if we could wait, we could avoid these surgeries.

But, unfortunately, it's not a simple decision. There are pros and cons, of course. The more food she keeps down, the faster she can gain weight and grow. Plus, the more comfortable she could be. But, they are not surgeries to be taken lightly, and they certainly have their drawbacks for me. It just makes me nervous that if she eats something bad later in life that her body wouldn't be able to get rid of it quickly. Blah, blah, blah.

So, a funny Murphy story: Tom went to go wake him up this morning. Murphy was wearing his Superman pjs. Tom started tapping his bum, saying, "Superman, Superman..." And without stirring, Murphy said, "Daddy, Superman's sleeping". I love his sense of humor.

Well, that's it for now. I hope you are all well!

Take care,
Christy

Sitting up!

Well, we had another busy day. Murphy started his new preschool today. He went right in the class and sat down with no problem whatsoever. I can't tell you how lucky we feel to have such an easy going kid. I guess God gave him to us for a reason, huh?

Then Brandy, me and Harlie rushed down to MCV for an appointment with her nutritionist. Harlie weighed 15 pounds, 1 ounce. Exactly what she weighed on surgery day - August 14th. We decided that the formula she was on just wasn't working. Her vomiting increased significantly. So, we are going to try to put her back on regular formula instead of all this special stuff. We'll see how that goes in the next few days. We were hoping that we could just start Pediasure - but she's no where close to being able to start that. I think she said that Harlie has to be 20 pounds or so. Who knows when that will be!

Then we rushed home for her physical therapy appointment. We were late for that, but Traci is so good to us that she waited. And then Traci sat her up on the floor, and she stayed like that... for a long time! Traci said it's official - she's sitting up! Woohoo!

I think Harlie is starting to feel better. But, she's still on oxygen. So, we'll just have to see what happens there. I keep trying to wean her off, but it isn't working. Hopefully that will change soon.

Picked Murphy up from school and he said he had a good day. That's about it. I hope all your kids had a good first day of school.

Take care,
Christy

5 Year Anniversary

Well, today was a very busy day. We took Murphy to his last day at his daycare. Even though I know he's going to be very happy at the new place, I felt kind of sad. Although I will not miss the drive, I'll tell you that.

Then we went to her helmet appointment. That went fine. Unfortunately I am paying for a mistake I made last week. She's supposed to wear her helmet 23 hours a day. Well, while she was in the hospital this last time, I put it on and just didn't take it off - for like 3 days! Once she got the n-j tube, we put the tube in the velcro strap to keep her from grabbing it. So, once we did that, I just didn't take it off. Well, when I finally did remove it, she had an abrasion over her left eye. Oops. So I had to leave it off to let that heal. Hopefully I can put it back on tomorrow.

After that, we went to her GI appointment. As is very common with my appointments with MCV/VCU docs, an intern comes in to chat first. They ask a gazillion questions and it takes forever. Then they go tell the doc and then the doc comes in and you have to repeat a bunch of it. Well, it made me so mad last time we went to see the GI doc. I have spent countless hours talking to every kind of doctor at every level. Quite frankly, I'm tired of it. So, when the intern came in to ask us politely if he could ask us some questions, I told him no.

I joked with Brandy that I should tell him I charge a fee to "train" new docs. But, I didn't. I told him that Harlie is just too complicated and I just don't have the energy today. Just come in with the doc and I'll tell you both at the same time. Once the doc came in, and we started talking about everything, I think the intern understood. I don't really have the time or energy to talk about the details of the GI appointment. I'll have to write that one later.

Then we went to see the pediatrician. That was okay I guess. Harlie is sick again, maybe its just a cold. But, unfortunately, she's back on O2 and she had to have it all last night, and all day today. It's a bummer. But hopefully it is just that she's sick and nothing more serious than that.

Well, tomorrow is our 5 year wedding anniversary. Hard to believe. Seems like it has flown by. We're not sure what we're going to do yet. I guess it's kinda hard to plan too much in advance.

Well, it is late, so I'm going to sign off now. Thank you again for thinking of us and for cheering us on.

Take care,
Christy

Still home!

Well, it's been more than 24 hours now, and we're still home. So far, so good! Our night nurse went upstairs to do vitals and came back downstairs with this funny little smile. She said, "her respirations are 44." Harlie's normal respiration rate (the number of breaths you take in a minute) is usually in the 80's. What a difference!!!! She has to feel better with that kind of change.

We had physical therapy today. We thought she did just great - especially considering all she's been through in the last two weeks! I really think she is SO close to sitting up on her own. She is definitely learning how to balance herself. I just can't wait! I need to start working with her every single time I'm picking her up - teaching her how to transition herself from sitting to laying down and the other way around. What a change that will be when she can do all that stuff by herself.

Well, tomorrow is a very busy day. We have three appointments! (helmet adjustment, GI, and pediatrician). That's it for tonight. I hope you are all doing well.

Take care,
Christy

WE ARE HOME!

Just a real quick one to let you know that we are indeed HOME!!! I couldn't be happier about everything that has happened these past few days!!! I don't have time to explain right now - I will update this entry tonight. I just want to say that she is still on ROOM AIR and doing GREAT!!! WOOHOO!!!!

Thank you, thank you, thank you for ALL your encouragement these past two, very crazy, weeks. What a roller coaster! Thank you for hanging in there with us - we are eternally grateful!!!

(More details later...)
-Christy

10pm - Well, we're still home and everything is going okay so far. Harlie is very happy, and so am I. Although, to tell you the truth, Harlie has been very happy the past couple of days. She smiled at anyone who would glance her way!

Let's see...where to start? Well, her lungs sound great (for Harlie, that is). No wheeziness - which is hard to believe. After a consultation with the GI docs, we decided against the j-tube. My gut tells me that she wasn't aspirating. And the docs really wanted more proof before going into the OR (which I really liked). I think the Pulmicort is what has really helped her. Maybe that in combination with the lung surgery is what has caused the improvement. She has had reflux for so long, if she was aspirating, I think (and the docs, too) that her lungs wouldn't have improved that quickly.

So, we resumed feeding her through her g-tube yesterday. And so far, so good. We will follow-up with Harlie's GI doc here in Richmond this week (no rest for us, we've already got 4 appointments scheduled!).

We also decided to switch her from her fat-free diet to a more "regular" formula. Hopefully the chylothorax has resolved itself and won't come back.

I can't believe she's on room air. I just can't believe it. What a difference it makes for us!

She has lost a little bit of weight (about a half a pound). Which isn't surprising considering for the past few days she's been on only enough feeds to keep her hyrdrated. Just a few hours ago we worked up to her full feeds. So, hopefully if she's working less hard to breathe, and she's back at full feeds, she'll start to pack on the weight!

Well, that's it for now. Thank you again for your support. I know that it must be very hard to know what to say or do when it comes to us. But just knowing that you care makes a world of difference. So, thank you for being there and for reaching out to us. I don't know what we would do without it!

Talk to you soon!
-Christy

Things...

Well, things are going I guess. Harlie went several days without throwing up. It was nice. But then yesterday she threw up 3 times. Bad sign.

The nurse did a test to see if the tube is in the stomach instead of the intestines and it looks like it is (it's supposed to be in the small intestines). I guess they'll need an x-ray to confirm it. So, I don't know what the plan will be. If they tell me that she needs to have the n-j tube placed again, I will scream. That was terrible and I don't know that I can let her go through that again. They tell me that it usually only takes 2 minutes but I know that wasn't the case with her.

The GI docs are supposed to come and talk to me now that they are going to have to play more of a role. The number of docs that I've had to talk to is really quite staggering. Hopefully they can get her in the OR soon to place the G-J tube. Prior to yesterday's vomitting, everyone was really happy with how Harlie's lungs sounded. And she was on ROOM AIR all day yesterday. (the first time since that one glorious week in March).

We had to put her on O2 during the night (her sats were staying in the low 70's) but, I'm completely fine with that. This morning, she's back on room air, and doing just fine. I had no idea that her lungs could turn around so quickly! Hopefully that's a very good sign that there wasn't THAT much damage and that once we get this reflux under control, we'll be okay. With the j-tube, we'll have to keep her on 24-hour continuous feeds - but that certainly beats lugging around the oxygen tank. I'll know more about how long to expect to have the j-tube once I speak with the GI docs. I have lots of questions for them.

They mentioned wanting to get some lung study done on her but they don't have the capabilities here. So that would have to be done at Johns Hopkins - but hopefully we can wait on that. I just want to get her home and let her be a baby for a little while. I was really hoping they could get everything done by tomorrow.

We decided to move Murphy into a different preschool program that is right across the street from our house. We really think he's going to love all that they have to offer. And we are going to love the convenience of it. Well, their back to school night is tomorrow night and I really want to go. (He starts on September 4th.) Well, that's about it for now. Thanks for all your support!

Take care,
Christy

11 Months Old Today

Harlie is 11 months old today. Hard to believe. I remember what it was like when Murphy was 11 months. He was so close to walking, eating table food, no more bottles and no more formula. Oh, how different it is with Harlie.

Yes, we've had a couple of crazy days. Just when I think we are getting a handle on things, life goes out of control. This has definitely been one of the more difficult hospital stays so far.

To recap:

We were getting Harlie ready to go to the pediatrician's. She was having a lot of trouble breathing and turned blue. It seemed to take all her might just to take one breath. I didn't want to call 911. I dialed, and hung up. I just wanted to believe that she would get better on her own. But I know what respiratory distress looks like, and that was it. They called me back (since I hung up) and I felt like a tool. Told them what was going on - trying to keep my voice from shaking and they said they were on their way. It only took a few minutes for them to get there. And we left.

There was a lot of confusion at the ER. Luckily, a nurse who knows us really well was there. They thought they were going to have to put her on a vent, but finally they got her straight. Then the whole helicopter transfer happened. I tried to tell them that wasn't necessary. I just felt like it was overkill to tell you the truth. I guess I just didn't want to believe that it was happening. I just wanted to take her home. But, they said it was too risky to do anything else. Without knowing what caused her distress and considering it had only been 24 hours since she was discharged from a hospital, it was the safest thing to do.

The ride was way cool. Too bad it was under those circumstances. Yes, I sat in the co-pilot seat. And as I have been asked by a few, I got to wear the headphones with the talking piece. I wish I had my camera. Harlie did great. The guys were really nice and the pilot pointed out things to me throughout the trip there. We got to DC in less than an hour. She was admitted to the PICU. You can't sleep in the PICU. Since I had no way to the RMH, I slept in the waiting room. It really wasn't that bad. (it was bad, actually, I'm just trying to make myself believe it wasn't that bad.)

Friday was a very busy day. I don't even know where to start. As far as what got us here, my theory is that the breathing treatments she was on (every 4 hours) dried up her secretions too much. I think she had some mucus plugging. After some time with no breathing treatments, her secretions slowly got back to her normal and she really seems fine now. The funny thing is that I was going to call Pulm. that very day to ask about that because I thought at the time that she was too dry. I am really learning to trust my instincts.

I've spoken with her pulm. docs up here, and they agree with my theory. So now she is on Pulmicort only twice a day. They stopped the other one completely. So, I guess since we're back, for some reason, everyone seems to want to take care of this whole O2 requirement and lung wheeziness for once and for all. They believe that her reflux has caused her to aspirate, causing damage to her lungs.

She went over 31 hours with no food and her lungs sounded better already. So, she had a CT scan of her chest, upper GI, and they put in an N-J tube (nasal to jejunum) tube. Next week as soon as they can, they are going to change her current G-tube (which goes into the stomach) to go into her jejunum instead. This will put food straight into her small intestines, which will reduce her vomitting by making it harder for it to come back up. Hopefully she won't vomit at all. I really can't imagine life without her vomitting.

At first, I was very sad. It just seems like instead of things getting better, we are learning more bad stuff, and going farther and farther from normal. But, if this keeps her from aspirating and saves her lungs, which will make her a better candidate for the Fontan (next heart surgery), well, then, I guess it is a good thing.

And I know that there has to be a down side to this. You have a stomach for a reason and bypassing it must have a consequence - but I guess we'll have to cross that bridge later.

Unfortunately, something went wrong with the machine and the CT scan didn't come out. So, they are going to repeat it today. The upper GI was normal. And the NJ process was terrible. He said that it normally takes him about 2 minutes to place one. It took almost one HOUR!!! He tried 3 separate times, and on the last one he said if he didn't get it, it wasn't going in. But they really wanted her to have it so she could be fed again. Luckily it finally went in.

She was so good. I know it is hard to believe, but she is so darn good. She just lays there and waits for them to stop. It breaks my heart that she's so used to this kind of life.

So, next week she'll have to go in the OR to have her g-tube changed to a g-j tube. Hopefully we'll get everything straightened out and it will be only a temporary thing. She's supposed to have a milk scan done as well. I think once that's all done, we'll be able to go home.

My mom came up yesterday to help me so I could leave to shower and eat, etc. Then today, Tom brought Murphy up. We will stay at the RMH tonight and let Tom stay at the hospital with Harlie (she's now back in the Heart and Kidney Unit).

Today while my mom stayed with Harlie, Tom, Murphy and I took the Metro to the Smithsonian. Murphy absolutely loved riding the metro. And he enjoyed the dinosaurs and the shark 3-D Imax movie. (not for very long though, because he fell asleep - and I did, too.)

The whole time I was there I wished that Harlie could be with us, too. I see so many families with their children and I just wish things could be different for us. I wonder what Murphy thinks when he sees other families with their babies, while ours isn't with us. I just have to hope that the next few months will bring her and us more freedom and more normalcy.

Well, we have to get back to the hospital. I'll try to update more later.

Take care,
Christy

Back in the ER

Well, as luck would have it. Harlie had a great night sleep last night. So much so, that when I called home at noon, she was still sleeping! Then I called home at 1:30ish and Brandi told me Christy was out front with the Ambulance.

Best I know now is Harlie turned blue when she was getting up. They turned up the Oxygen, but that did nothing. Not sure what else they tried, but I know they didnt want to risk the drive to MCV.

So 911 was called yet again to our home.I haven't been able to speak with Christy but for a few minutes. They are at the MCV ER and were having an X-ray done. They wanted to try and get yesterday's X-ray from DC to compare with. Other than that, Harlie was okay. Ill keep you updated best I can.

Later,Tom

UPDATE: Im tired and dont feel like typing right now, but here goes.

Christy and Harlie took a helicopter ride to DC at 6 pm this evening. Yep, you read that right.
Basically, MCV had not much to offer other than a transfer to DC. They wouldn't allow us to drive her, or take an ambulance. We heard "what if" a lot of times. I dont have the whole story, nor do I really need it. But essentially she is going to have better care in DC for whatever is causing her breathing problems. Literally, thats about all we/I know. She was given a few breathing treatments in the ambulance that I understand seemed to help. She seemed perfectly fine when I was able to see her at 6:00. Then 5 minutes later, the Helo crew arrived and packed her into a little pod and off they went.

Sorry to sound negative, but Im not feeling very jolly right about now. We are all straight here for the most part, can't really plan much more until all the Doc's look at her tomorrow in DC, then we will just have to go from there.

Thats all I have. Tom

ps, on a lighter note, Christy just told me the helo ride was awesome! No surprise. She got to sit in the Co-Pilot seat. She found it very funny when the Pilot was told to "land on the big Teddy Bear". She also said she was trying to remember as many details asshe could to tell Uncle Bruce the pilot of the family all about it.

Day 8 - Home Sweet Home!

Ahhhh...finally we are home!

Last night they took x-rays at 11pm. Sometime in the wee hours of the night, a doc came to tell me that they wanted to take more x-rays in the morning. The surgery team rounded at 6am, nothing new to add. Just that if the next x-rays showed no increase in air, then we could go home. They took x-rays at 7am. I think it was about 10:30 when we got the word that we could leave. Went over paperwork, got all loaded up and we were on the road by 11:30.

It is so nice to be home again. When we're gone, I just completely shut out any thoughts of home. Then when I get home it is so wonderful. Harlie is doing okay. She hasn't slept much, but that's probably the excitement of being home. Hopefully she'll have a good night tonight. She's on breathing treatments every 4 hours. That's going to get old pretty fast. Hopefully in a few weeks, the frequency will decrease.

Well, I am ready to get some sleep in my own bed. I added some more photos from the past few days. Thank you for all your support, prayers, words of encouragement, etc. This was a tough surgery and a tough week for us and I really appreciate everything.

A special thanks to:
Todd, Lindsey and Olivia for bringing us dinner tonight.
Heather and Stefanie - Harlie loved the cheetah (leopard, tiger, whatever it is) and her balloon. Kristie, Dave, Nathan and Tayne - that candy bouquet was (note the past tense) the coolest thing ever. Seriously, I loved it.
Mom and Mary Ann - thanks for everything.

7pm Update

7PM - Well, they pulled the chest tube out at noon. They took more x-rays at 6pm just to make sure that there wasn't a lot of air in there. Then the doc came to tell me that they were just not comfortable sending us home based on those x-rays. There is still some air and they want to wait till 10pm to see if it is stable or not. So, we decided to go on ahead and stay another night. Hopefully, we'll be on our way home in the am. Of course, I already went and check out of RMH today. But, luckily, they are letting us have our room back for the night. Well, gotta go. Thanks!

Day 7

Well, the nurses are giving Harlie a much needed bath (her helmet doesn't smell like roses, let me tell you!) so while she's well attended to, I ran to get some breakfast and to the library.

The surgeons rounded at 6am this morning. For some reason, they didn't do the suction test this time - they want an x-ray and then they will determine if the chest tube can come out. Hopefully the x-ray tech will come around soon. She coughed a lot last night again. I spoke with a pulmonologist (actually two) late yesterday. I learned so much about her wheeziness in her lungs. There are a couple of things that could be causing it. So we are going to start with a different kind of breathing treatment that helps bronchomalasia (floppiness of the bronchial tubes to her lungs). If the wheeziness lessens, then we know that's it and in time she will outgrow it. There are some other things that could be causing it that I really don't like - reflux and microaspirations. The bad thing about these two causes is that we would really need to stop them from happening so we stop the damage they are causing to her lungs. The great thing is that I feel like we can get the help we need by seeing pulm. here instead of in Richmond. Not looking forward to more road trips, but if it is what she needs, then so be it. We have been seeing pulm. since bringing her home and I have never been told any of this. This is very discouraging considering all the time that we've lost. Lungs grow the most during the first two years of life. So, at least we still have some time to make some improvements.

Well, need to run.

OH! Thanks for the tip, Suzanne! When speech comes by today, I'll mention that, too!

Please keep your fingers crossed that they can pull the chest tube out today!!! I'll try to update later on today since my mom and Tom's mom are here to help me with Harlie. (I don't leave her in the room alone).

Take care,
Christy

Day 6

Well, Harlie had a terrible night. She was up every single hour coughing. It was a very long night for everyone in the room.

General surgery rounded at 7am and decided NOT to remove her chest tube. So, that buys us at least another day's stay. The problem is that her lobes were not formed normally (duh, right?). So, when he removed the lobes, he had to cut through air passageways. So, when she breathes, air leaks out of her lung into her chest cavity. The tube allows that air to escape so it doesn't build up in her chest. We have to wait for those passageways to scar down and stop leaking air. They will come back in the morning and check again to see if it's safe. I hope and pray that it is.

Well, the much anticipated Passy-Muir Valve was a bust. She didn't tolerate it at all. She just couldn't seem to push the air out of her mouth and nose. So, she inhales, but cannot exhale. So, not a sound was heard today. The speech therapist said she would bring it back tomorrow and try again. After she left I thought of a couple things that might help. And she's going to e-mail Harlie's ENT about the trial today to see if he has any ideas. I think he might suggest going down in trach size as far as the size of the hole, but keep the length of the tube. The more air that can go around the trach, the better. So, I guess we'll see what happens tomorrow. Clearly, this will be something that we'll have to continue to work on as she grows.

The ST said that not everyone is a candidate for the PMV, so that might have to be something we accept in time. And I think this goes back to the fact that her tongue could be blocking her airway sometimes. I know that she can do it though. I have felt air passing through her mouth. So, I'm really disappointed, but I still have hope. So, overall kind of crummy news today.

On a positive note, Harlie is much more smiley now. My mom and Tom's mom came up today and are with Harlie now so I could come to the RMH to shower and change clothes. So, I better get going. As always, thanks for all your thoughts and prayers. Please pray that they can pull the chest tube out tomorrow and that the PMV will work soon!

Take care,
Christy

PS:I added some Summer Photos under the Family Section. 8/20 - 3:30
Later, Tom

Day 5

Well, just a quick one for now. Last night was my night to stay at the RMH and Tom is waiting for me at the hospital.

Just wanted to let you know that I added some more pics. One is of her incision - I know you've got to be curious as far as what it looks like.

ENT came by and said she definitely was in dire need of drops. So, she's got the meds she needs there. So, I feel better now. Today they are going to pull her last tube out - the remaining chest tube. YAY!

They put in an order for speech to come by tomorrow with the passy-muir valve. So, hopefully they'll come in the morning so we can get discharged at a decent time. Well, gotta go. As always, thank you for your continued support.

Take care,
Christy

Post-Op Day 4

Well, I'm at the RMH to shower and change clothes, so I thought I would give a quick update.

We got moved to the floor yesterday afternoon. It is not a private room, but it is right across from the nurses station, so I'm very happy about that. (Hey Karen, it is Jameson's old room - and the same side of the room, too.) The nurses have been really nice, so that's going well. I spent the night last night and Tom will sleep there tonight.

Harlie is doing okay, all things considered. Her pain meds were being given every 4 hours, but she just couldn't make it to the next dose without clearly being in pain. Last night she woke up every 3 hours crying. So, they are going to give her something in addition I think.

Unfortunately she lost her last IV last night, so everything has to be given through her g-tube. So, everything had to be changed over to oral meds, which are not as strong or fast-acting. But, considering we are only going to be here a couple more days (hope & pray) I really don't want them going fishing for another vein. She's got scabs on every limb from where they had to try numerous times to get a site. I just don't want to put her through that again.

Last night some pretty yucky goo came out of her ear (I'll spare you the detailed description). I have been trying to get ENT to look in her ear since Tuesday, but haven't succeeded yet. Ugh. She had a bad ear infection on Monday, and was only on meds for that for one day. And they have not put her on any meds for that since - so I am afraid that the infection has gotten worse. Every day I have asked, but they never come. Last night I really got frustrated and I know that the doc was annoyed with me. But I am learning that being nice doesn't always get you what you need. They tell me that ENT will be coming today. So, we'll see.

When they rounded on her early this morning they said they were going to pull one of her chest tubes today. They told me that they only pull one a day. So, tomorrow they'll pull the second one, and observe her for most or the rest of the day. I think there is a slight chance we could be discharged tomorrow, but I'm not getting my hopes up. Monday is probably more realistic.

Well, that's about it for now. Thank you for all your kind words!!! I love reading them! Talk to you later,
Christy

Post-Op Day 3

Well, she seems to be comfortable today. They changed her meds and they seem to be working. They turned off the ketamine this morning to make sure that the oxycontin will do the trick alone, before moving her to the floor.

They turned off the suction from the chest tubes. So, they will watch the drainage and if it is stopped, they will take them out today (yay!).

She will definitely be moved to the floor today. But Tom came back this morning so it will be much less stressful with the two of us. We'll take turns sleeping in her room. Well, I say that, but I don't know what her room will look like, if it will be private, etc. I guess we'll just have to wait and see, but sleeping there probably won't be a problem.

She was more awake this morning. Although not really interacting - just looking around. No smiles yet. Although the cardiologist fellow said she smiled at him earlier, so that's a good sign. Maybe once the ketamine wears off, she'll be more "awake".

Well, that's it. I brought the camera today so I can take some more pics. She looks more like herself, so they will be better than the last ones. Okay, talk to you later! As always, thank you for checking in on us.

Take care,
Christy

Post-Op Day 2

It is hard to believe that we are ONLY on post-op day 2! It feels like forever since I handed her over.

Harlie had a rough morning. ENT woke her up to do a trach change. She still had the cuffed one from when she was on the vent. They upsized her from a 4.0 neo to a 4.0 pediatric. It is the same size hole, but a longer tube. That was a little traumatic, and made her very upset. So, she threw up right afterwards. Then the nurse had to change all her bedding. She didn't like being moved around for that, either.

Then the surgeon's team rounded and had to mess with her a bit. He said everything looks good, but he wants to leave the chest tubes on suction for another day.

Then they came to take x-rays. So they had to mess with her again. She really just wanted to be left alone.

Then cardiology rounded. Her x-rays showed some fluid, so they are going to try a different diuretic. They didn't like how wheezy she sounded, so they are going to get some cultures and test for RSV and some other stuff. They are going to leave her arterial line in. The nurse told me that she cannot go to the floor with an arterial line, so I know we're not going anywhere as long as she has that.

The swelling has gone down a lot, so she is starting to look more like herself. I even got a very small, quick smile from her today. Although most of the time, when she does look at me, it is more like a "what have you done to me" kind of look. Ugh. Poor baby.

They are still trying to manage her pain. They don't want to leave her on the current pain plan for much longer so anes. will come and do another pain consult today. She's back on her full feeding. So, that's good. Hopefully she will tolerate that just fine.

I guess that's it for right now. Thank you for all your comments on my guestbook! I really appreciate them all.

Take care,
Christy

Post Op Day 1 - PM update

Well, we didn’t get kicked out of the ICU today (Wednesday). It looks like it will be tomorrow though. But we have the best social worker and she has already spoken to the folks on the HKU (Heart and Kidney Unit) about Harlie’s issues and our past experience so hopefully we’ll have a better stay this time.

Wednesday was a decent day for her. They ended up having to stop the morphine – it made her incredibly itchy around her face and it was clearly agitating her. So, they went back to a combo of fentanyl and ketamine, which seemed to work this time.

It looks like Harlie got another label during this stay. During rounds the doctor called her a “difficult sedation”. Her swelling has gone down a lot. Once it started to show improvement, they let me put her helmet on. It doesn’t seem to be bothering her at all.

Her chest tube drainage seems to be decreasing quickly. I think they are going to take them off suction tomorrow. Hopefully soon after that they will take them out. Then we get to take her home. It’s hard to think about taking her home when she hasn’t even woken up yet.

Well, that’s it for now. I’ll try to update later. Oh, and I posted just a few pics of her that we took today.

Take care,
Christy

Post Op Day 1 - AM update

Good Morning, Dad here - Harlie had a pretty good night. This morning they were able to get her off the vent and back on a trach collar. She is still pretty drugged up with Morphine, but all in all, I think she looks pretty good. She is still retaining alot of water so she is swollen, but that is part of today's goals to get that down. The morphine is making her itch pretty badly, so they gave her some Benadryl to hopefully help with that.

She is going to have another Pain Consult this morning to address the issue. We are also working this morning getting her back on her feeding schedule. Christy is waiting on the nutritionist upstairs now to discuss the plan. Unfortunately, we are probably going to be kicked out of the ICU either today or tomorrow. We would most likely be moved to the Heart and Kidney unit. For those who keep up with this journal, you'll remember our dislike for this unit (see entry 3/15/07).

I have been working on several game plans to ensure we have someone at her bedside 24/7 when that happens. (volunteers?)

Thats it for now, I am sure Christy will want to add more as the day progresses.

Later,
Tom

Surgery Update - 3PM

Well, so far so good! It is hard to believe that I'm in such a great mood while my baby is in an ICU! But today has definitely gone better than I expected, and that's been a long time coming, let me tell you!

About noon, Dr. Sandler came out to let us know how the lobectomy went. He said that her "lung tissue" was something he had never seen before - not "lobe like" at all. Completely abnormal growth and huge. So big in fact, that he had to make a larger incision and cut through her muscle. He said that would definitely make for a more painful recovery. Pathology will biopsy or study or do whatever they do to the tissue. Hopefully we will know something in the next 3-4 days. Smiling, he said odds are, they are going to say they don’t know what it is. Ahh, leave it to Harlie…

The actual procedures itself (the lobectomy and upper placation) went great. He said that we are already out of the woods as far as saving her middle lobe (which is normal if you can believe that). It now has plenty of room to grow. He said it would be a slow process, but growth at any rate is better than none! Unfortunately, because of the abnormal growth of all the connections in the lobes, he expects that she will need the chest tube for a week or so. Luckily, I knew better than to believe the 4 day estimate originally given. I planned for more than a week anyway.

We didn't get to see her until about 1ish. She is pretty swollen and surprisingly she was “awake”. She tried to turn towards us to get a better look. Ugh – it broke my heart! I am afraid that as she gets older, it will get harder and harder to see her like this. Unfortunately, we have learned that a thoracotomy is extremely painful - more so than a sternotomy, which is what she had for heart surgery. Also, cardiac kids have a much higher tolerance for pain meds, so they need a lot more than most general surgery patients. And Harlie has had a lot of pain meds in her 10 months! Her heart rate was high and she was clearly uncomfortable and in pain. So they kept on giving her more and then the cardiologist said, "bring out the horse meds". So, when we left she seemed to be sleeping more soundly.

They started a new thing here where 2-3pm is "quiet time" for the patients. They turn out the lights, no talking, no coming or going from the unit, and they encourage parents to get away and take a break. Which I think is a good thing and I thought it was timed well for her since it gave us just enough time to get all the questions answered and paperwork completed. I hope that not hearing our voices will help her rest easier. So, we left and came over to the RMH to check in and get all settled here. We will go back and spend the rest of the afternoon with her.

My mom, sister and niece are here, so since Harlie is in wonderful hands and should be sleeping soundly till tomorrow we are going to go out to eat for dinner. As everyone says here, we have the most expensive babysitters - so take advantage of it.

Everything went so well today – we could really get used to this! It just feels so good to be happy about this!!! Thank you for all your messages, thoughts and prayers. And Heather, thanks for the good luck charm – I would say it served her well today.

Talk to you soon,
Christy

Surgical Update - 9AM

Well, we got here okay. Although as soon as we got off the interstate and entered the familiar streets to the hospital I thought I was going to throw up. But, once we got parked and up to registration, that went away. They said surgery was scheduled for 7:30 and at 7:34 they came to take her away from us and to the OR. Of course, all the craziness prior was standard. We had to speak to everyone and tell everybody what she was having done today.

And here's something funny for you...because of hospital policy, they had to put a mark on the ear they were going to put a tube in. Hmmm, no opening to the other ear, not really sure how they could make a mistake on that one. But that's policy for you.

I decided against changing her feeding tube at this time. As long as she's on continuous feeds, I see no reason to go to a mic-key button. And she'll have another surgery on her bum as soon as she fully recovers from this surgery, so if she's off continuous feeds by then, we can change it at that time. Dr. Sandler said that he did not see any point in attempting to remove her lobes via a scope. She is just too small and her lungs are too over-inflated for that to work. So, instead of wasting the time that she's under, he was going to go straight for an incision. I was really glad to hear that it will be on her side, instead of her back. He said it would be about 4-5 inches long.

The anesthesiologist said he originally wanted to give her an epidural for the surgery, but with her spinal abnormalities, that was too risky. So they are going to do an arterial line.

ENT went first and about an hour after they took her, Dr. Precadio came out to tell us how that part went. And drumroll please... it went GREAT! I am SOOO excited. The ear tube went in just fine. So hopefully less ear infections there. He said he believes that she probably has all the workings of a middle ear on her left, even though there is no canal. So, we will have to be mindful if she gets a fever that it could be an ear infection in that ear - but of course you could never see it. Not a big deal when you can see an infection on the right - but now that she has a tube, she should have less infections on that side since it will be able to drain. He said IF (yes, that's an IF there) she has tracheomalacia, he didn't see any evidence of it during her resting time. Everything looked great in there. No evidence of aggressive suctioning, granulomas, or scar tissue. He said they have to use a rigid bronchoscope for her because of her jaw abnormality. And even though it is still severe, he said he thought it has improved from the last time he saw her. So, that's good.

Typically, they go to a pediatric sized trach after 15 pounds and this morning she weighed in at 15 pounds, 1 ounce! They had to put in a cuffed trach today because she's on a vent, but he said he believes she would be fine with either size. So now we are back to being hopeful that as soon as we can fit in her jaw reconstruction, maybe we can get that trach OUT!

Now for the most exciting part... he wants to do a passy-muir valve trial while she's in the hospital here!!! For those that don't know, a PMV is a one-way valve that goes on her trach. It allows air in, but doesn't allow it out. That forces the air when she exhales to go up past her vocal cords, allowing her to MAKE SOUND!!! Just thinking about it makes me cry. I have missed hearing her cry more than I can ever say. But, now that she's laughing, well, to hear her laugh would be indescribable. Makes me giddy just thinking about it.

So, all good news so far - which is so wonderful needless to say. Hopefully, the lung surgery will have the same positive results. It should be a few more hours now.Well, I'll update as I can. Thanks for thinking of us. So far your prayers are working so keep'em coming!!!

Tomorrow is the BIG day!

Well, it is 11pm and we are all ready to go. Tom wants me off the computer so I can get some sleep. But, I have to stop Harlie's feeds in one hour, so what's the use? Besides, not sleepy. Shocking, I know.

Well, we found out late this evening that her surgery is scheduled for 7:30am. So I am really happy about that. Although, we have to have her there by 5:45am. So, it will be an early start for us in the morning. Oh, by the way, Karen sent me the photos of Jameson and Harlie from our dinner the other week. So, I posted them. It was so funny, as soon as we sat them next to each other, they grabbed each other's hand. So, that was not staged. They were too cute checking each other out.

Oh, we did end up getting a room at the Ronald McDonald House, so that's good. Maybe that's a good sign of things to come...

Well, I will update as I can. Thank you for all your well wishes so far. I love to read your entries in the guestbook. I know you might not know what to say, but it is just nice to know we're in your thoughts. So, if you're afraid, please don't be. It really does help us, especially during times like these.

Thank you and talk to you soon!
Christy

PS, Tom and I got tickets to see Allison Krauss Wednesday night (I think at the coliseum). Of course, now we can't go. If you are interested in buying them (I think they are $70 each) please let me know. You can have 2 tickets or 4 (I think the couple that we were going with are willing to sell their 2 if that helps). Just click on contact me and it will send me an e-mail. Thanks!

One more day...

Hi everybody,

I’m sorry I haven’t been writing lately. I’ve been keeping myself busy trying to make the time go by. But I must tell you that I loved hearing that so many of you have been wondering where I was. It is nice to know that my entries were missed. I was telling a friend tonight that writing in this journal has really helped me get through this past year. Knowing that you are counting on me to update you helps me find something to be positive about every day. So, thank you.

Well, Harlie had a rough week. We took her back to the pediatrician for an ear check to make sure that the new antibiotics were working. Her ear looked better, but I don’t think the meds are working on anything else that might be causing her coughing. I didn’t see any improvement, that’s for sure.

On Thursday night, our night nurse couldn’t come in and Harlie had a terrible night. She was up coughing most of the night. I think the longest she slept soundly was an hour and a half. On Friday she vomited a lot. And I mean, a lot. We also had another helmet fitting. I really can’t believe how rounded out the back of her head is getting. I just hope that this hospital stay doesn’t set us back on all the progress we’ve made.

Tom’s mom is coming up tomorrow (Monday). Her and Cal will stay here with Murphy while we’re in DC. Tomorrow I will get us all packed and ready to go. I will also find out what time we have to have Harlie checked in for surgery on Tuesday. It will be nice to know what time we are leaving – I guess just to have some plans set in place. Sometimes just knowing the smallest of details in a time of such uncertainty helps a little. Sounds hokey, but it’s true. We will also find out if a room is available for us at the Ronald McDonald House. Now that I've stayed there several times, I am much more comfortable. It is just kinda hard to get used to sharing space with strangers (like a bathroom).

Our social worker from DC called and told me that after the surgery, Harlie will go to CICU (cardiac intensive care unit) since she’s a cardiac patient. That made me feel much better. Plus, it just makes me feel better to know that we will get to talk to her cardiologists there about how this surgery fits in with her cardiac issues. I have a lot of mixed emotions about this surgery. On one hand, I am so glad that it is almost here and I am so hopeful that it will be the “cure” for her breathing issues. But I am also terrified. All her other hospital stays were all longer than originally anticipated and in every single one, we learned something new, that was bad. So, I think being scared about this one, which is pretty darn major, is just natural. Hopefully, this one will be the one to turn everything around for her, and for us. If it works, and helps her breathing, it will have a wonderful domino effect that will be life-altering.

Well, one more full day to go… Please keep her, and us, in your prayers. Now, I am going to try to go to sleep. Thank you for your support.

Take care,
Christy

One week to go!

So, we went to see Pulmonary again today. They took x-rays, and all looks normal for Harlie. As far as why her good lung is wheezy, not really sure what's going on there. One theory is that it could be caused by the same thing that caused her ear infection. Another theory is that since her right lung isn't functioning properly, the blood flow goes over to her left lung and overfills it. I am not sure how the surgery and lobectomy will affect this if this is the case. But I guess we will find out soon. Luckily, he agreed that there's really nothing that can be done to help her at this point - so no hospital. The only thing they could do is put her on a vent to give her a break from having to work so hard to breathe. But, a vent has it's negatives with Harlie. Her lungs cannot handle postive air pressure. So, I think the vent is only used if absolutely necessary.

The main thing I'm bummed about is her weight. When were at the same office just one week ago today, she weighed 14.13. Today, on the same scale she weiged 14.11! We were so happy about getting over 15 pounds - but that was on a different scale. Not to mention that it's a LOSS! So, we don't know what to think. I'll just hope that something was wrong with the scale or the nurse weighing her (haha).

Well, surgery is just one week from today. We just hope and pray that it gives us the results we want.

Take care,
Christy

Another ear infection.

Harlie went off antibiotics on Friday, the 3rd. By Sunday, I could tell she was getting sick again. So, we took her back to the doctor today. Of course, her pediatrician is ON VACATION! Summer is really proving to be difficult. Well, luckily I have spoken with one of his partners before, so she worked us in and Harlie has another ear infection. So, we're going to try a different antibiotic this time.

While examining Harlie, she seemed to be pretty concerned. She is very wheezy again. Plus, Harlie had a few of her coughing attacks while there. She said she was considering sending us to the hospital. Since this was our first visit with her, I asked her to please call one of her other docs to just make sure the hospital was the way to go. So, she called the pulmonary clinic and we have to go see them tomorrow. I think she just wants to give Harlie the best chance to be healthy as possible for going into surgery next week. Hopefully a couple doses of the new meds will help.

Oh, on a great note, Harlie weighed in today at 15 pounds and 2 ounces! So, we're really happy about that. Well, that's about it for tonight. I'll let you know how tomorrow's appointment goes.

Take care,
Christy

Quick Update

The past few days have been pretty busy with just normal life stuff. Which is a nice change. We changed Murphy's daycare to part-time, so I keep him home 2 days a week. That really makes the week fly by. I want to spend some quality time with him before going to DC for Harlie's surgery. And Harlie takes up so much of my time, I think it is important for him and I to get out and have fun.

Harlie had another helmet appointment on Thursday. We are all really pleased with her progress there. We will have one more appointment next week before going to DC. I really hope there won't be a problem with her wearing it in the hospital. I'm sure they will want it off for surgery and the initial recovery, but hopefully after that, they will be okay with it. At this point, it will kill me to see her laying on her back without the helmet on. We've come so far, I don't want anything to stand in our way.

Oh, on Friday, we (Tom, Murphy, Harlie and I) went to Karen and Jamie's house for dinner. Their daughter is Jameson, who I've mentioned before. (Jameson is going through the same heart surgeries that Harlie is). It was so funny to see the two of them together. I was so mad I didn't bring my camera. But, we will get them together again and I'll get some pics and post them. Anyway, we had a great time. It was so nice to get out as a family. It happens so rarely that it always feels wonderful. So, thanks Karen and Jamie for having us over!

Well, today I worked at Mountcastle Homes for the first time since I went on bedrest last September. They needed someone to cover the office, so I went in. It was really weird, but nice, too. It was nice to relax for a few hours. haha

Well, it is late. I hope you are all well.

Take care,
Christy

Two weeks and counting...

Well, today was another busy day. I don’t know how that happens. It appears that my calendar isn’t that full, and the next thing I know, the day is over.

We had our pulmonary appointment today. It went okay. The worst thing about it is how long it takes. We left the house before 1pm and didn’t get home until a little after 5pm. We did see my favorite nutritionist. She had not seen Harlie in a while and she said she was really happy with her weight gain. She weighs 14 pounds, 13 ounces and she is just over 26” long. I was hoping for 15 pounds, but it looks like that is right around the corner. Woohoo!!! She certainly feels heavier, which feels wonderful when you’re carrying her around.

We are going to leave her on the Portagen formula until after she fully recovers from lung surgery. And as long as she’s on Portagen, we will remain at continuous feeds, 21 hours per day. I’m pretty used to it, so it doesn’t really matter to me.

I think the pulmonologist was a little concerned. Harlie is working harder to breathe now than when he saw her at the end of May. He prescribed Pulmicort breathing treatments twice a day. I don’t know much about it, but I think it is a steroid and it is often used to treat asthma. I think he was thinking it might help with her secretions. We've tried two other breathing treatment meds, but neither has ever made a difference. I think it is just the inefficiency of her lungs, and the breathing treatments aren't the solution for that.

I am still working on her oral feedings. Really, they are called oral trials. There’s not much “feeding” going on, that’s for sure. I think I mentioned before that our goal is to show her that food tastes good and we want her to learn to anticipate a bite, opening her mouth willingly. Hopefully we’ll trigger her swallow reflex at some point. And I know it is so far fetched, but every time I put some food in, I will her to swallow it. One day she will and I will be the happiest person on the planet!

Well, tonight during her evening trial, she opened her mouth for the syringe! I was so excited! I think that is such a big step. And there were 2 bites that I didn’t see the food come back out. Now, that doesn’t necessarily mean she swallowed. She does have the ability to hold several bites in before her mouth fills up and then it all comes out. But, when some did come out, it really didn’t seem like enough for all the bites.

And I know this all sounds weird. I’m sure some of you are wondering how in the world we can’t see what’s going on in her mouth. But, Harlie has a very small opening. Because she is missing some bones on one side of her jaw, it doesn’t open straight up and down like normal. You can really tell when she yawns – it is very crooked and hardly opens. At her most open, you can barely see in there. And then if you can see, her tongue is usually rolled towards the back. In fact, for the first time, I saw her tongue today. We were suctioning out her mouth and she was feeling the suction with her tongue. So, I’m hoping we’re making some really good progress there.

Well, that’s about it for today. Two weeks from right now and her surgery will be over!!!

Take care,
Christy