In the PICU now

Well, after 48 looong hours, Harlie was finally moved out of the ER and up to the PICU. They said that’s a record stay in the ER. I am just so thankful for the quiet room and hope that I can finally get some sleep!

Harlie had 2 more cyanotic episodes (turned blue) today. One this morning (while on the vent) and one this afternoon during her transfer to PICU. It is so painful to watch your baby struggle to breathe. Clearly she is not getting better (which is very discouraging) but they are doing everything they can to figure out what’s going on. Unfortunately, it is not as simple as having pneumonia and treating it. It is my understanding that they simply aren’t sure what the infection is. Her new and unusual circulation and cardiac condition make treatments very complicated. What might be good for the lungs adversely affects the heart, etc.

She has many good doctors from several specialties working to figure this out. So, it looks like we’re going to be here a while. I am thankful that we are here in Richmond instead of DC, that’s for sure. Tonight, Harlie looks more comfortable than she has all week. I think they finally found vent settings that she tolerates, so that’s good. We are staying positive and not panicking, but we are certainly worried and scared (I mean, who wouldn’t be?). It’s the stuff like this that can take its toll on little babies recovering from heart surgery.

So, please continue to send good thoughts and prayers our way.
Thank you,
Christy

Hospital

Its late but I thought I'd pass on some info. Today didn’t go well.

Long story very short, Harlie didn’t make the travel to her follow up appt well. She turned blue again no matter how much O2 we were able to give her. From what I hear, it was really scary.After some brief chaos and failed attempts to get her to respond to the O2 (at the pediatrician’s office) the call was made to 911 for an ambulance ride to MCV Emergency. (Yep that makes 2 rides in 6 months for my wife...)

She is currently in the ER and will be transferred to the PICU "as soon as a bed is open". She seems okay right now. She was resting peacefully when I left at 11. She does have a form of pnemonia that has basically (medical terms) junked up her lungs to the point that she cant exchange O2 worth a damn. Hence the blue color. Actually it is not too surprising to us (or the Dr's) as what we are learning, this is pretty much expected to happen to heart patients and trach patients...and certainly to us as we are both!

They loaded her up with the "big gun" antibiotics and took a ton of samples/tests. We will know more tomorrow I suppose. Unfortunately, no one would really give us that level of severity that Christy and I have grown to use. You see, with all the things we deal with on a daily basis you have to sort things out on a 1-10 level of severity. We weren’t given that answer very clearly tonight but, I didn’t really expect it either. The jest of it is, despite that dreaded pneumonia word, she should recover in a few days, but only time will tell. If there is one thing Harlie has shown us, is that she has her own timeline for things and she will let us know when she is ready to come home.Oh, one good note, the ER just so happened to be staffed tonight with (2) of my Steeler Club members (so Christy has a little company at least until 1:00am)…go figure.

Good Night
Tom

Crazy Day

Well, yesterday was a very crazy day.

We left my house at 12:30 to go to one appointment, and didn’t get home until 7:30!!!! No matter how my day is planned, it turns out to be an adventure of some sort.

The short version is that during Harlie’s helmet adjustment, I was holding her, and all of a sudden I realized that she was turning blue. Her nails were blue, her face was blue, and her skin was ashy. We suctioned her really good, thinking there was a plug in her trach. She was still breathing – she just wasn’t getting a lot of oxygen. We immediately took her to her pediatrician. Within minutes they started a breathing treatment and oxygen. And she pinked right up and gave us a big smile. Whew! That was scary.

But she has to be on oxygen – the second the oxygen is away from her trach, her sats go way down. (Luckily, we know from her appointment on Friday that none of this is cardiac related.) So then we went to St. Mary’s for chest x-rays. They came back that she has an infection and atelectasis (the collapse of part or all of a lung by blockage of the air passages). Her doctor gave her another shot of Rocephin (I’ve lost count of how many of these she has had to have) and will give her another one this afternoon. She will also get her last shot of the season of Synagis (her RSV shot). They will start those again in the fall.

Anyway, we are giving her breathing treatments every 3 hours and chest PT every 2 hours trying to help her get that gunk out of there. We are doing all we can to keep her out of the hospital. But if we can’t get her better soon, that will be the next step. So, with the breathing treatments, pt, the shots and a different antibiotic, hopefully she’ll bounce right back. The good thing is that my disappointment over the results of her surgery can now be fully explained. It has nothing to do with her heart. So, hopefully, once we get this infection under control and get her lungs clear, then we should see all the good results of her heart surgery.

It is a little scary to me that this could happen despite the close watch we all have on her. She’s been seen by numerous doctors, cultures have been taken; she’s been on antibiotics since the beginning of March...still this happens.

And I’m still learning – not only all this medical stuff, but learning to trust myself. On the way to the helmet fitting, her breathing was very labored. I called her doctor and told her that it was unlike anything I’ve heard before and I was starting to get really worried (and this is REALLY odd, but I’m not a worrier, if I were, I would have already gone off the deep end). And an hour later, she turned blue. Lots of lessons learned.

Well, that’s it. I have to go. Thanks for checking in. Please send Harlie some good thoughts and prayers that she fights this at home and not in the hospital. Thank you.

Take care,
Christy

6 months old

So, Harlie turned 6 months old yesterday. So hard to believe. In some ways I feel like we've come so far and I'm so proud of my family. And in other ways I feel like we've barely just begun and the journey is still so incredibly overwhelming. I guess it doesn't help that she doesn't look like a typical 6-month old. I know developmentally, she'll catch up one day. I am just looking forward to the day when she can keep her head up all the time.

Nothing much is going on. Still trying to get Harlie back in balance. She's either too wet, or too dry. Today is the last day of her antibiotics, but you would never know it. She doesn't seem to be getting any better. We can't seem to put our finger on what's wrong. I was hoping that the results of her surgery would be more obvious by now. She's still really tired all the time. Hopefully when we get her all back in balance, all the pieces will fall back in place and things will be better all around. Well, I hope all is well with you.

Talk to you later,
Christy

Cardiology appt.

Well, today was Harlie's post-op cardiology follow-up appointment. They did an echo (ultrasound) on her heart and all looks good. No fluid build up and her heart function is as it should be after the Glenn. We will see him again in one month.

Harlie had her helmet fitting yesterday. That went better than I thought. I was afraid it was like a retainer, if you go a while without wearing it, it won't fit anymore. Even though her head grew a quarter of an inch, it still fits. I just wasn't using enough strength to put it on. You really have to pry it apart and I was afraid I was going to break it. So, now I know and she's been doing really well wearing it. She really doesn't seem to mind it at all. The only negative is that it is really hot. Christina drilled some holes in the back of it to help with that.

So, tonight I got to take Harlie outside so I could talk to our neighbors, which was so nice. Murphy was playing with their kids and Tom was making dinner. Since it was really nice out, I thought it would be good for Harlie to get some fresh air. It felt a little weird, just because I think she needs to stay hooked up to the humidifier and close to the suction machine. Whenever I'm with her, we have a lot of stuff with us, so it felt really weird to carry JUST her outside. But now that she's getting older and the weather is getting better, that should be able to change a bit. Hopefully, we'll be able to take her off the humidifier when she's awake (just put the HME on) so she can start to move around more. And we are starting to wean her off oxygen. She's only on 2 liters now (she was on 7 prior to surgery!). All of this just means more freedom and normalcy and we are really ready for that!

Oh, they weighed her today at her cardiology appointment. She weighed 11 pounds, 9 ounces. That's a pound more than she weighed a month ago. So far, she has been gaining about 1 pound per month. I am anxious to see that speed up a bit. Well, that's it for now.

Talk to you soon!
-Christy

Mended Little Hearts Meeting

Well, Harlie is still fighting some bug. I had to take her back to the pediatrician again yesterday. They are doing another trach culture. We knew when we left the hospital that she was fighting some trach germ. They just didn't have the results back yet to determine if the antibotic could fight that particular germ. And she didn't seem to be improving, so they took another one just in case something else started growing. She also gave Harlie another antibotic shot. Hopefully we'll see an improvement soon. Because of her increased secretions, she's been vomitting a lot. So the doctor put her on continuous feeds for the next day or so to see if that helps her keep her food down.

We had occupational therapy yesterday. I think we pretty much agreed that getting Harlie to learn to bottle feed just isn't a reality. So we are going straight to baby food. We aren't going for volume, just trying to show her that food has taste and can be pleasant. She gave me a special spoon to use that is flat and small so it isn't so invasive in her tiny little mouth. She did pretty well overall. She didn't reject it or gag, which is great.

Last night my friend Karen (her daughter is Jameson who just had the Glenn procedure a few weeks ago as well) and I went to a Mended Little Hearts meeting. It was our first one. I would never have gone without Karen going with me, so I was glad she asked me. We met some nice people there. There was a 13-year old girl with a very substantial scar from her heart surgeries. But she seemed to be okay with it. She was wearing a v-neck shirt so she wasn't hiding it, which I thought was great. There was a mom there who calls her son's scar his miracle line or magic line. I thought that was very clever and will probably copy that. :)

It was just nice to talk to other people who had similar pregnancies, made similar choices and experienced the same fears. It is too easy to feel so alone in all this. Well, that's about it for now. We have physical therapy and a helmet fitting today. Hopefully that shot will start to kick butt so Harlie can go back to being her happy self. Grandma left today to go back to Pennsylvania. She was such a big help to us and we will miss her. Well, thanks for all your support.

I hope you are all well!
-Christy

Home Sweet Home

Wow, it is SO much better to be home! We’ve just been hanging out, laying low.

This weekend proved to be challenging in the feeding pump department. At 2am on Saturday morning, our feeding pump broke. Luckily, we had our night nurse, and she converted over to a gravity drip. Unfortunately, it took some time to get a new pump delivered, which got her feeds all off schedule. Just stressed me out a little.

So, the new pump proved to be terrible! The bags won’t allow milk to pass through the tube unless you put it in the mechanical device, which opens and closes a valve. The bad thing about that is that if the device doesn’t work – you can’t convert to a gravity drip – which is TERRIBLE! We don’t know if we got a bad batch of bags, or a bad pump (probably both). But Tom and I spent 2am to 6am on Sunday morning trying to make it work. This stressed us out A LOT!

The company said they couldn’t deliver a different pump until 11am. I have never wished for complete oral feeding more in my life! So, they brought an old non-portable pump that isn’t so mechanically dependant, which has worked without any problem at all. I think that whoever designed that new pump clearly does not have a child that is tube fed. It is always good to have a gravity drip as a back-up and the fact that those bags don’t allow that just amazes me.

Anyway, aside from all that fuss, the weekend was good. Harlie is really happy to be home. Hopefully now that she should have a little more energy, we can get her on some sort of schedule. We’ve added some more photos. Well, that’s about it. Thanks for checking in. I hope you are all well.

Talk to you later,
Christy

We're Home!

So, it is Friday night and we are home! The weather was terrible and it was a 4-hour drive, but now we are home!

It was a very busy day. Orthopedics came by and reviewed the x-rays of her spine (they took those yesterday). He said that she does have some fusion in her neck - but that is probably helping her now. She does have scoliosis (we knew that already). They want to follow her closely to make sure that her spinal cord is protected. We will see them again in a month to go over everything in more detail and to set up a regular schedule.

I spoke with several people about my nursing concerns (social worker, charge nurse, nurse practitioner and patient advocate). They were all very caring, understanding and helpful. My social worker made a sign to post at Harlie's crib that was written from Harlie's point of view. It was very cute and illustrated how important it is to pay attention to her. I gave the patient advocate some suggestions that I thought would help. I will be more prepared for our next hospital stay (in 2 months). But, hopefully that will be a much shorter stay.

I have a funny story about Harlie. She often puts her hand up over her eyes as if to shut everyone out. The OT was attempting oral feeds and Harlie put up BOTH her hands. The OT said, "she must be really mad at me". Well, the second she was done and started to walk away, she looked back at Harlie and she was peeking from behind her hands like she was saying, "is she gone yet?". It was hysterical!

So, Harlie is doing great. She is so happy to be home and so am I. It was so good to see Murphy, too. I hate being away from him. Well, thank you to everyone for all your prayers. Obviously they worked! Harlie pulled through just great. And thank you to all of you that put Harlie on the prayer lists at your churches. I think she must feel the love of so many. I know that we do.

So, thank you, thank you, thank you!!!
Love, Christy, Tom and Murphy xoxo

One more night...hopefully

Well, hopefully we'll be out of here Friday night. It will most likely be a late discharge, but I don't care. Better than being discharged at 4pm (b/c of traffic).

So far, nothing is growing in her blood - which is great. However, there seems to be something growing from her trach cultures. And I can tell. She had a bad night last night. I had to get up to suction her 4 or 5 times (which is a lot for her - and for me!!!) To me she sounds really wet. They are going to put her on oral antibotics (well, through her g-tube). But they said they will let us go home with that.

The hardest thing about my stay here is having to ask for the same things, over and over again. I have to ask every nurse after every shift change, and really it is stuff I shouldn't even have to ask for. Last night, the last thing I said to her night nurse was to please watch her inhalation bottle - please don't let it go empty b/c that will dry her out and make things worse (duh, for people who are trained on trach care). Do you know that when I woke up this morning - the bottle was EMPTY?!?!!? And there were NONE there ready. So a different nurse had to page a respiratory therapist to come and do it. It took over 30 MINUTES!!!!!! Well, I have to stop now, b/c I could go on and on. And Harlie is up there by herself which totally freaks me out. I hope you are all well.

Take care,
Christy

Still waiting...

Hi. Just another quick update. Today is Wednesday and Harlie will finish her antibotics tonight. Typically, they wait another 24 hours to make sure everything is okay before discharge. But, in Harlie's case, they want to wait 48 hours. Which totally stinks. So, assuming that all of her tests come back okay, the soonest we could leave is Friday.

She was moved yesterday late afternoon to the Heart and Kidney Unit. This has been a very difficult move for me. I am just not used to this level of care (minimal). A baby's defense is to cry - that's what alerts you that something is wrong. And she can't do that. So, I slept in her room last night (you can't do that in an ICU). My mom came up this morning to sit with her so I could come back to the RMH to shower and change clothes (and give you an update). I am just not comfortable leaving her alone.

I spoke with another surgeon yesterday about her anoperineal fistula. That surgery will be next and should happen as soon as she is fully recovered and released from cardiology (6 to 8 weeks from now). Ugh. But, on the bright side, it will be nice to start checking some issues off her list.

OT came by yesterday and tried oral feeds again. This time, they actually tried - gulp - baby food. (Karen, I loved your comment in the guestbook by the way!!!) Their thinking was that her tongue could handle baby food better than liquid and she might just skip the whole bottle feeding altogether. I will talk to my OT back home to see what her feeling is on this. (Allison - she actually did pretty well with a spoon.)Well, that's pretty much it. I gotta get moving.

Talk to you soon!
-Christy

Change of Plans

Hi. Just a quick update as it is very late. Unfortunately, as much as I am ready to come home, Harlie isn't. She spiked a fever and that means they have to run all these tests. It takes 2 days for the test results to come back. We can only leave after the results come back okay. So, the earliest would be Thursday. They are afraid that since she was on Tylenol around the clock, it masked something. Since today was the first day she didn't get Tylenol (due to a nursing/communication error) it finally appeared. So, I guess we got lucky for that. They put her on antibotics and we'll see what happens.

I am so disappointed. I know setbacks are common, but it still really stinks. Hopefully it is nothing serious. Although I was really happy to see them come running to take care of her. She was about to get moved to the Heart and Kidney unit, but now they will keep her in PICU. Yesterday I said I started to feel really lucky to have some of these experiences. Well, I've changed my mind. Now I think everyone with healthy kids should take a moment to think about how lucky you are! I will be the mom at playgroup saying "don't bother me unless it's life threatening". And I'll mean it. No, I'm just kidding of course. Well, I need to get to bed.

Talk to you later.
-Christy

Monday

Well, ENT came in this morning and changed her trach. All looks good with that. So, they said we should be able to leave tomorrow. They just want to watch her for 24 hours after the initial trach change to make sure everything is okay.

Harlie looks just great. She is all smiles. I was chatting with her nurse yesterday about that. I told her that sometimes I actually worry about how little she fusses. That just doesn't seem normal to me. She said that babies that have been through what she has get pretty tough and tolerant. The nurse also shared her personal experiences with me. She lost her first two children to a very rare syndrome (Fryns Syndrome). One at one year old and the other at 2 hours old. I feel like I've entered a whole new world since having Harlie. I would never be exposed to any of this had she been perfectly "normal". I can honestly say that I am really starting to feel lucky. The greatest thing is that I have learned that parents with special needs children have to learn to look at everything as the glass is half full. Not a bad way to live, huh?

Anyway, I can't wait to get her home. I am so over this hospital stay - and it has only been one week. I don't know how I did this for so long last time! So, hopefully today and tonight will be nice and boring and then we can head back home. I hope you are all well.

As always, thank you for your support!!!
Love,Christy xoxo

Sunday

Hi. Sorry I have not been able to update lately. We just haven't had the opportunity to sit and write.

Harlie is doing very well. They said they are happy with her progress. Her spirits are definitely better and she is starting to act more like herself. She smiles at me and her nurses. The swelling is gone from her face but still seems to be there around her head. Maybe today it will be gone.

She only gets pain medication if it looks like she needs it. Which is crazy to me. If I had open heart surgery I would be on pain meds around the clock!!! Goes to show you how incredibly resilient babies are.

PT has come by a couple of times to sit her up and she appears to really like that. She still has 2 IVs, one in her arm and one in her foot. Although they keep having to move them because eventually the veins shut down. But she is much happier now that she has one free hand to put in her mouth.

OT came by yesterday and worked on oral feedings. They rigged a pacifier with a tube in the middle connected to a syringe so we could control how much went in her mouth. She took 4 mls - which is tiny, but good for her.

They are thinking that her trach change will be Monday or Tuesday, and then she needs to stay for one day after that. So, it looks like we'll be home Tuesday or Wednesday. Harlie had some visitors yesterday. Mike and Marcy came up to see us. Tom rode home with Mike so I could keep our car here. And Marcy ended up staying the night so I wouldn't have to spend my first night at the Ronald McDonald House by myself.

My Mom and Dad are on their way up now. They will spend the day here and then Marcy will ride back with them. Well, I need to go. We need to get over to the hospital. I hope all is well. Take care,
Christy

Post-Op +3

We came in this morning to be surprised that Harlie is now out of the CICU. They moved her up to the PICU (pediatric ICU) to make room for another child. She would have been moved out to the floor (less intensive care) but they are treating her trach as a new one, which is kinda of silly but who am I to tell them that.

Anyway, she is down to just a few connections and the main arterial line will come out today leaving only an IV or 2 for meds. She is back on her presurgery feeding schedule and is tolerating them just fine.

OT and PT will be working with her today as they can. We requested a consult with Orthopedics to discuss our recent findings with her cervical spine and the other spine related issues we learned at birth. This is a topic we really haven't talked to any specialist about. I am dreading this one truthfully.

We are also hoping to talk to genetics today to followup on the testing that was done after birth. They told us back then they didnt expect to find anything that would tell the story of why this happened (or if it could happen again). Hopefully this will remain the story after we hear from them.

Okay, that's about it so far today. Harlie continues to recover as planned. I know we can't take her home until after her first trach change on Monday or Tuesday, but as of now, there isn't anything that would keep us here longer than that. If that is the case, that gets us home in 1 week. Not too shabby for a 5 month old on her 5th surgery (two of which were open heart).

Thanks for the support,
Tom

2nd Day Post-Op

Hi. Everything seems to be going well. They had to re-do Harlie's tracheostomy yesterday afternoon. They decided that she could go up 2 trach sizes. So hopefully that will give her a little more breathing room. They had to close up the stoma for the heart surgery because they can't sterilize it for surgery. So, they close it and patch it and try to clean the whole area as much as possible to avoid infection. So now they are treating her as a new tracheostomy patient which means that the trach stays in place for one week until ENT comes to change it and make sure everything is healing okay. That is scheduled for Tuesday.

Her cardiologist came by yesterday and said that ENT still talks about Harlie from when she was admitted after birth. Apparently, Washington Hosptial Center (next door where she was born) rarely calls someone from Children's to come and help intubate a patient. So, the severity of her jaw abnormalities are quite rare and memorable. To have so many rare things happen in one little girl, what gives? As she said, Harlie is one in a million.

Anyway, they are going to start feeding her today. I think they are going to start with unfortified breastmilk on a slow drip to make sure she tolerates it and then work up from that.

They took her off the vent at 6am this morning. And they will start removing the chest tubes today. Out of everything, those are the worst to see. So, we will be glad when those are gone.

I have to run now, but will update this entry as things develop. As always, thank you for all your thoughts and prayers.

Love,
Christy

12:40pm - The chest tubes are out. Hopefully this will make Harlie a little more comfortable. The surgeon reminded us that since the trach is right on top of her chest incision, infection is very possible. He said that normally the risk of infection is about 5%, but because of her gastrostomy and tracheostomy, the risk is about 50%. But they will continue to watch her closely, so we're not too worried. Okay, gotta go. Thanks for checking back!

3:40pm - Well, Harlie is definitely more alert now. She broke our hearts earlier when she saw us and started to cry. That girl is really something. She only cried for a minute and seemed to calm down and just look around. She was definitely upset when he was removing the chest tubes, but as soon as he left her alone, she was wiped out and went to sleep. She is starting to look more like herself. The swelling is starting to go down a bit.

PT and OT have come by to see her. The PT put her in a sitting up position. I am such a chicken, if it were up to me I wouldn't move her an inch!!! But surprisingly, she seemed to dig it. I remembered that when we did her barium swallow study she was all strapped down and couldn't put her hands in her mouth - and when they gave her a bottle, she sucked right away. So, I thought since her hands are all strapped down again, and she couldn't put her fingers in there, maybe the same would happen. So, we gave her a pacifier and she started sucking right away! We were so glad to see that because she hasn't sucked in such a long time. The OT said she wants to capitalize on that and start trying to get her to do some oral feedings while she's here. She's going to put a tube in the pacifier and connect it to a syringe so she can control the amount that she sucks. I'm excited about that. I would love to make some progress on that while we can. Well, it's time to get back in there. Talk to you later!

1st Day Post-Op

Well, she looks pretty good today. Definitely getting that swollen look. They are giving her lasix to start helping her to get rid of that extra fluid. She certainly is pink - so pink, in fact, that she looks red to me!

She's already starting to move around and kick her legs. She even opened her eyes and looked around. She's grimmaced a couple of times, but other than that looks fairly comfortable. As long as she is asleep, I am fine. When she starts to wake up, I think that's when it will become much more difficult for us.

We spoke with ENT today and they are taking her back into the OR this afternoon to re-do her tracheostomy. They had to close it for her surgery yesterday. They will determine if she needs a larger trach size. They are working her in today, so we don't know what time that will be.

They have weaned her down to 30% oxygen (21% is room air) from 60% yesterday. But, that doesn't really mean much considering she'll be back in the OR this afternoon. So, that process will have to start over after that. It is really weird to be back here. But I have to say that it is SO much better to be here NOT post-partum!!! Looking back, I don't know how I did it.

Well, I'll provide more updates as I can. As always, thank you for your support.
Love, Christy

Surgery Day

Well, it is now 8:45am and the waiting has begun.

Yesterday was a long day. We left our house at 6am and got here at 8am (which was shocking). She had a bunch of tests and we spoke to a lot of people. The anesthesiologist came in and listened to her lungs. He asked me "does she always breathe this hard?" Yes.

He said that he was concerned and wanted to talk with the attending doc about it. I suctioned her and made him listen again. He said it was better, but was still concerned. I told him that she won't sound any better than she does now. He left and came back and said they were going to proceed. It is so funny how our normals are totally different. After talking to her cardiologist and her surgeon, I know we both felt better. We are just focusing on the positives this surgery will bring - no more extra oxygen, no more pulse ox monitor (well, at least not for cardiac reasons - we might just put it on her at night for trach reasons). Plus, she will feel better, work less to breathe and will grow at a much better rate. So, that's all exciting stuff for us.

They have decided to do the Glenn, and not the double switch. The double switch is too risky and the Glenn will be a safer operation. Sounds good to us. Basically, her right ventricle is too small to function as a 2 ventricle heart - so they will make the two that she has function as one. The Glenn is the 2nd out of 3 surgeries used to repair a heart with only 1 ventricle. Here is a link if you want to check it out:

http://www.inova.org/inovapublic.srt/heart/pediatric_services/cardiac_surgery/bidirectional_glenn.html

So, she will have the Fontan surgery when she is between 18 to 24 months. From what we've heard, the Glenn is the easiest procedure out of the three. The surgery takes about 3-4 hours, so we are thinking we will be able to see her sometime after 1:30pm. When we were checking her in this morning the lady said to Tom, "Dr. Jonas is the best - all his patients go home". That was comforting to hear.

After all the prep, the anesthesiologists came to get her at 7:30am. We stood there kind of awkwardly for a minute. Then I said, "Oh! You want me to give her to you?"

As far as how long she'll be here, we're not sure. It all really depends on her and how she does. Well, we just got a page and the surgery officially started at 8:55am. I will update as I can. I can't enter multiple entries in one day, so I will just have to add to the bottom of this one. So check back later. Thank you for all your kind words and prayers. We need them.

Talk to you soon,
Christy

10:58am - Got a page - She's been on the heart bypass machine for about one hour now. All is going well so far.

12:58 - Surgery is officially over. Tom and I spoke to Dr. Jonas and he said there were no surprises, which is great. He said the surgery went well. Anesthesia had a difficult time intubating her (same issue as after her birth). They removed her trach and put a tube in through her mouth. But her jaw abnormality makes getting into her trachea through her mouth VERY challenging. They used a scope or something. Dr. Jonas said they were very proud of themselves for their good work.

I don't know when they will reinsert her trach. Dr. Jonas decided not to remove the PA band. She has two small superior vena cavas (normally you have one big one). He said her two small ones mean higher risk of blood clots. And since they are small, he decided to leave the pulmonary artery in place with the band, to give her some extra blood flow and oxygenation. It will make the next procedure a little more difficult, but the benefit to her now outweighs that.

There was quite a bit of adhesions (scarring) in/around her heart due to the previous operation. This is different for everyone - just your body's way of responding. This just means higher possibility of excessive bleeding. So they will be watching closely for that.

As always, the next 24-48 hours are critical. She will be brought into the isolation room in the CICU (cardiac intensive care unit). We just got word that we can go see her at 2pm.

3:00 UPDATE:

Harlie is now in the CICU and resting comfortably. She has about 100 lines/tubes connected which is normal for this operation. We posted some photos if you would like to see her. Her cardiologist came by and said that she was really happy with how pink she is. Evidently Harlie was blue yesterday due to her poor circulation. I told her I didn't notice and she told me not to feel bad. Most moms and dads don't notice since we see her every day, and she probably has never been really pink anyway.

They are really happy with her weight gain considering her cardiac issues. She weighed 11 pounds, 1 ounce yesterday. We will probably continue to fortify my milk and give her fortified formula at night till she makes it on the growth chart. They are going to leave the ET tube (airway) in her mouth till ENT gets by to evaluate her stoma (hole in her throat) and trach size. They are thinking it might be time to go up a size. I know that needs to happen, but every now and again when we would suction her, some air would go past the trach and she would make a little squeak. When the trach gets bigger that won't happen.

Since she has the ET tube in, they will keep her sedated until her trach is back in place. Then they will start to let her wake up a bit and hopefully get her off the vent. Although it is really nice to see her neck without the trach ties in the way!

Well, I guess that's pretty much it for today. Thank you for all your kind words, thoughts and prayers. I know we are high maintenance right now and we can't tell you how much we appreciate that you take time to check up on us and think about us. Harlie is an amazing little girl and we feel lucky to be her mom and dad.

Love,
Christy xoxo

Sunday Night

Well, it is Sunday night and we are packing for our trip tomorrow. After a lot of thought we decided to stay at the hotel that is on the upper floors of the Washington Hospital Center, which is right next to Children’s National Medical Center. That way, we don’t have to worry about driving and we can be very close to Harlie. We will stay there the first week and then play the rest of the stay by ear. Originally, we planned to leave tonight so we wouldn’t have to worry about getting to her pre-op appointment on time (10am). But the hotel didn’t have any available rooms, and to be honest, Tom and I didn’t have the energy to load up tonight anyway. Harlie has had a couple of rough nights, and we haven’t gotten much sleep. We are keeping our fingers crossed that she is well enough for surgery as planned, but I guess tomorrow we’ll find out for sure. (There is a link to CNMC under my favorite links just in case you want to check it out).

For her pre-op appointment they will run some tests, x-rays and blood work, etc. It will be an all-day thing. We should be able to talk to her cardiologist and surgeon about what the plan is and what we can expect as far as duration of the surgery and recovery time. We are very nervous and scared, but we just need to put our blinders on and put one foot in front of the other till we get through this. I keep looking at the potential positives -(besides better heart function) possibly getting her off oxygen, losing the pulse ox monitor, better growth, etc.

Well, this weekend Tom’s family was in town. Since Saturday was such a nice day (although very windy) we decided to go to the park. Our day nurse (Brandy) went with us, which was SOOOO helpful. She took care of Harlie so I could run around with Murphy. Murphy and I needed a little fun out of the house together. I have to admit that I felt like such a dork having the stroller at the park! Well, I’ve got to go. I will update the site as I can. And we will be checking messages and e-mail throughout the week if you want to reach us.

Take care and we’ll be in touch soon,
-Christy

Quick one

Well, today we go to get her cranial band. If I get some good pics I'll post them over the weekend.

Yesterday we went to see the pediatrician. Harlie weighed 10 pounds 11 ounces. I am so anxious to see how her weight gain changes after her surgery next week.

Some people have asked for the information on where we'll be. I'll post more details over the weekend. We leave Sunday night. She has to be there early Monday morning for all the pre-op exams and that's when we should get to talk to the surgeon and her cardiologist to find out what their plan is. Then I believe her surgery will be early Tuesday morning.

On another note, Jameson's surgery went well. I'll let you know how she's doing when I hear more.Okay, I'll update over the weekend. Talk to you later.

Take care,
Christy

Thank you!

Thank you to those of you that offered your blood! Sounds weird, but what a great way to help Harlie! So far, it looks like we have 4 donors, which is fabulous.

Thank you Bruce (my big brother), Nancy (his wife), Cabell (my little brother) and Gina Barnes (Pampered Chef)!!! We are so grateful that you are all willing to take the time and effort to do this for Harlie!

Well, our physical therapist came yesterday for Harlie’s weekly “workout” session. I am so glad that she comes to see her every week. She shows me stuff that Harlie can do that I just don’t realize. Since she is still so tiny, I still think of her as a newborn! She is very close to rolling over and she actually enjoyed her tummy time. And she continues to get better at her head control.

We have an appointment with her pediatrician today and then tomorrow we go to get her cranial band. Tom’s sister, Kristie and her kids, Nathan and Tayne, and Tom’s mom, Mary Ann, are coming down today. We are really looking forward to their visit. Mary Ann is going to stay down to take care of Murphy for us while we are in DC (we are so grateful for that!)

I would like to ask you to keep our friends Karen and Jaime and their daughter Jameson in your thoughts and prayers. Jameson will go in for her second open heart surgery first thing this morning. I know how scared they are and I think they could use all the good vibes they can get. Thank you again for all your support. And THANK YOU to all my wonderful blood donors!

-Christy