Monday, June 30, 2008

Quick One...

We had speech and physical therapies today. Both went really well. In speech, Beth got Harlie up to four cards with the PECS. Beth brought us a 3-ring binder with pages with velcro in it, so the picture cards can be stuck to the pages. There is also velcro on the cover, so you can pull just the cards you want to focus on for easier access. Harlie is definitely scanning all the pictures and choosing the one she wants. At one point, she chose a card and pulled it off the velcro and then realized she didn't want that toy, so she put it back and then picked a different card and handed it to Beth. We are going to continue to work with just four cards for the next week to make sure she's got it before going up anymore.

In physical therapy, she walked a lot. The walking was getting really bad and I was afraid that it was starting to be too negative for her. But a few nights ago I realized that she will walk between Tom and I if we read her one of her favorite books. I read a page and then pass the book to Tom and she walks to Tom to have him read a page, etc. It has been working great! She doesn't even seem to notice that she's working! Traci has been saying that we can't make her, she has to have something to motivate her. So, it looks like we found something for the time being. So, when Traci got here this morning, we brought out the book and started to work. She's definitely not too happy about having to walk to get it. The praise we give doesn't seem to do too much to make it better, either. Oh well. I guess the prize of getting the book will have to do. The BEST was when Traci put the book on the ottoman. So far, she's only walked to one of us, and we catch her if she falls forward (which she does a lot). So, I was VERY nervous about her walking to an object without someone being there to catch her. Plus, I think we are all very nervous about her hitting her face. Well, she walked to the ottoman just fine! I am so happy about that! It's like she knew that she couldn't fall forward, so she just put out her hands and went without any trouble. She definitely CAN do it. She just needs to get over her fears. Traci said that it will help if she knows that she can get back up if she falls. And that means that she has to be able to get up without grabbing onto anything. So, that's our "assignment" for the next few weeks. We need to work on getting her to get up into a standing position in the middle of the floor. It's so funny that just when I think that walking anytime soon is impossible, she has a good few days and I start to think it COULD happen! In her development, a lot can happen in three months. It would be so great if she could walk by September!!!

Well, July 1st marks four weeks post-op. Hard to believe how fast it has gone by. Just five weeks to go to get her wires removed! In just one more week more time will be behind us than in front of us. I am getting so anxious to see what she will look like. And to start oral trials again. Unfortunately, the soonest I could get her in to see her ENT in DC isn't until September 5th. So that means that after her wires come out (Aug.5th) we will have to wait another month to find out if the surgery was successful enough to make a difference in her ability to breathe through her mouth and nose. Ugh - talk about agony!!! I just hope that Baby 3 cooperates and doesn't come early!!

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

Take care,
Christy

Thursday, June 26, 2008

PECS and Speech Therapy

Today we had speech therapy. Last week Beth made us some picture cards. We are working on another means of communication for Harlie called Picture Exchange Communication System (PECS). Each card is laminated and it has a picture of an object or activity or feeling, etc.

The goal is to have them velcroed in a notebook so if she wants to go outside (for example) she can pull the “outside” card and hand it to me. The goal is to broaden her ability to communicate. While she is great at learning signs, there are plenty that are just too complicated to expect her to do at her age. Plus, we are the only ones who know what she’s saying. Whereas with the PECS, she can hand anyone a card, and they will know what she wants or needs.

Last week we worked on getting her to look at two cards to identify an object. So, we would show her two cards and ask her which one was the car, for example. Today, Beth started showing her that in order to get an object, she had to hand her the card that matched that object. I don’t know if that sounds easy to you – but let me tell you, repetition is NOT easy – for anyone to handle. Personally, I was exhausted after less than 45 minutes and I just watched!!! How Beth has the energy to do that all day, I’ll never know. I am very impressed by her, let me tell you.

Anyway, first Beth started with just one card – a picture of a ball. Harlie would throw it to Beth and if Harlie wanted it back, she had to hand Beth the picture. She did that over and over again for a while. Then she added another card. By the end of the session (up to two cards) she would go for a card and you could see her think about it, then she would realize that wasn’t the right card, and she would grab the one that matched the object that she wanted. It was really amazing to watch her learn and figure it out! I am SO proud of her!!!

One of the things that really amazed me was that she didn’t get frustrated or mad that she had to learn a new way of communicating. I mean, she knows the sign for ball and would sign it, normally resulting in her getting the ball, but this time she wouldn’t get it that way. You would think she would get mad or something. It’s almost as if she understands that we are trying to teach her something. Amazing when you think about it…

Anyway, we got Murphy’s room switched over and he loves it. He is so excited about the baby. He keeps asking me when the baby is getting here. The other night at dinner he asked if the baby was laying in all the food. I have to admit that I was confused for a second. But Tom was quick and told him that the baby lays in a different part of the tummy. Kids are funny. It really is a whole different experience expecting now that he understands a bit. In a good way, I mean. Well, that’s it for today. Thanks for checking in!

Take care,
Christy

Monday, June 23, 2008

Bad day/Good day

Okay, the good stuff first…

We had another appointment with Harlie’s cardiologist for a second fetal echo (ultrasound of the heart) on Baby #3. And everything looks GREAT! He said that they got some great pictures and we can stop worrying about this baby’s heart now. I wasn’t really THAT worried since we got a good report six weeks ago, but it is very comforting to know that this hurdle is safely past. YAY!

Our next hurdle is three weeks from now. We have another appointment with my perinatologist for another ultrasound. Hopefully everything will look good then and we can relax the rest of the way (yeah, right).

So for the bad stuff...

So, for physical therapy today, we met Traci at the play area at Regency Mall. We were thinking that being there would help motivate her to go from one area to another – enough to WALK between the areas. So, Brandy, me and Harlie got there a little early since it takes a while for Harlie to walk anywhere with her walker. Harlie will go really fast for a few feet and then stop and not move. Then she’ll go again – stop and start, etc. I don’t get why she won’t just walk a steady pace like a normal kid, but that’s just one of my many unanswered questions.

So, we’re trying to get her in the doors (there were three full sets – so plenty of other options for someone not patient enough to walk behind Harlie). And for some reason, everyone stacks up behind her. Even though it shouldn’t, it puts pressure on me – and I’m sure she can feel it, too. I finally tell the people behind us (who are blatantly staring – with NO shame) that they can go around her, please. They do, but then STOP, yes, STOP to stare and watch her. Now, I try to give people the benefit of the doubt – maybe they are just so overcome by her cuteness that they want to REALLY soak her in. Of course, as much as I wish that were true, I cannot make myself truly believe that. Odds are they’ve never seen a kid like her and they just want to figure her out a bit. Either way – I wish they wouldn’t be so ridiculously obvious about it. Talk about making me feel weird! And I can only assume that Harlie feels the stares, too, because she absolutely REFUSED to walk after that. And although she is only 21-22 pounds – there is NO forcing her to walk. Period. Gee, thanks staring people. And thanks Mom and Dad, for raising me right and teaching me NOT to stop and stare at people who look a little different. I mean, seriously, how in the world could they think that is acceptable behavior???

So, I pick Harlie up and we go to the play area. Harlie started crawling on the stuff, completely enjoying looking around at all the kids. The kids started gathering around her, just staring at her. One mom sat down next to me and her daughter (pointing at Harlie) asked her “What’s that thing around her neck”? She said “It helps her breathe”. Her daughter asked why and she said “because some people need help to breathe”. Just hearing that be said out loud and watching all the kids just stand there and stare at her – all the while Harlie not having a clue what’s going on – made me start to cry.

My child needs help to breathe. My child looks different. The harder I tried not to, the harder it came. It’s the innocence of Harlie not knowing, that tears my heart into a million pieces. One day she’ll learn. She’ll know why they are staring. And she will cry because it’s her heart that hurts. I know it could be worse. I know better than most - now that my eyes have been opened to a whole new world. But, it only eases the pain slightly. The bottom line is that I will still need to do what I need to do to get my daughter through the tough times. Even though it COULD be worse, nothing changes the way it IS.

Well, Traci got there, and I eventually pulled myself together. I can’t help wondering if Harlie could feel something with the staring, because she simply would not cooperate with the physical therapy. She flat out REFUSED to walk – no matter what we did. It was so frustrating. Especially when we know that she CAN do it. I suppose if people staring makes ME feel self conscience, than maybe it has the same affect on her.

That mom that explained to her kids what the trach was, was pretty nice. Nicer than most in that most people completely ignore me – despite what their kids are doing around Harlie. She said she was sorry if her kids upset me. It’s more complicated than that, but I appreciated her kindness. But as we were leaving she said something like she won’t walk because she’s “spoiled”. She didn’t mean it in a mean way, but it definitely hit a nerve for me. Spoiled?! First of all, if there’s any kid that deserves to be spoiled – it’s her. But, we don’t spoil her. In fact, I am harder on her than any normal mom is on her healthy kids. Every day I make Harlie do something she doesn’t want to do. Something that she’s afraid to do. Something that SHOULD come easy to her – but doesn’t. It is not easy to push your child like I do. Thank God most of the time, I am fine. I am happy. I really am. I have a lot to be happy about. I know more than most what a true gift a child is – healthy or unhealthy. But some days, some situations just hit me harder than usual. And I’m guessing that the pregnancy hormones aren’t helping me any.

Luckily, after I dropped Harlie and Brandy off at home, I met Tom at my doctor’s appointment and that went well, so that put me in a much better mood.

Oh, this weekend I e-mailed Robert Barron, the one who does the prosthetic ears in Northern Va. He is the one that used to work for the CIA doing disguises for their agents. He now does prosthetics - ears, noses, eyes, hands, etc. Fascinating stuff. Anyway, on his website you fill out a "contact me" form, which I did, just to find out when we should start thinking about Harlie's ear - and if we should go the prosthetic route, or reconstruction route. So far, Tom and I are thinking prosthetic for now and once she gets older letting her be a part of making the decision for surgery. Well, like I said, I just sent my request THIS weekend and HE, himself, called me TODAY! I couldn't believe it. Anyway, he said to call him back when she's five. So, that's that. I was just hoping that she would get an ear before Kindergarten. But, I guess we'll just have to see how the timing works out. Well, that’s it for tonight.

Take care,
Christy

Wednesday, June 18, 2008

New pics

Just a quick one to let you know that I finally uploaded some more photos. My favorite one so far is the last one. I can't believe how incredibly different she looks than before. And I can't help but wonder how much more she'll change. What will she look like three months from now? Or a year from now? What will she look like after eye surgery, and then after she gets an ear?! Holy Cow! It is so strange to think about.

Oh, today felt a lot more normal. Brandy had the day off, so I took Harlie with me to take and pick up Murphy from school. This was her first trip there since the surgery. It has gotten to be somewhat of a treat to go with her. She loves seeing the kids and they seem to get a real kick out of seeing her. Of course they asked me what was up with her head. Um, she had a craniotomy? I mean, what do you say to that??? I just said that she had an operation. Oh well.

We have started to move some of the bedrooms around. We are moving Murphy into the guest room and will make Murphy's old room the nursery for the new baby. Murphy is going to love having a bigger room. Now that the baby will be here in just three months, we figured we should go on ahead and start getting ready.

Oh, one other thing - tonight as we were getting the kids ready for bed, Harlie was on the floor looking at a book. Well, Murphy grabbed another book (Five Little Monkeys Jumping on the Bed) and sat next to her and read it to her. She just sat there looking at him, and the book. It was SO adorable!!! It's those little moments that make everything hard, SO worth it.

Well, that's it for tonight. I hope you like the new, bruise-free Harlie. I suppose that right when I get used to her underbite, they will take it away and I'll have to get used to her whole new look all over again. But, if she can handle it, I can, too. Her personality is so perfect for her life. We just couldn't be luckier.

Take care,
Christy

Tuesday, June 17, 2008

2 weeks down, 7 to go...

Well, clearly I lied about posting the photos (still haven’t done it). I don’t know where the days have gone, but by the time the kids are in bed, I don’t have the energy to write or upload the photos. Sorry about that.

Murphy’s first day of summer program was Monday. He will go to school full days, only Mondays, Wednesdays and Fridays (he was going every day). His school has swimming classes there (they have a pool onsite) on Mondays and Wednesdays, which we are all excited about. Although, Murphy is a VERY cautious child, and only wants to play with his toys on the steps. He has no desire to actually swim. So, we’ll see what happens after a few weeks.

Today I took him to see Dr. Lanning (the same surgeon who did Harlie’s nissen a month ago). He will have to have a minor surgery (in and out the same day) next Friday. To go to the appointment, he had to skip his nap. This is a big problem for him because he is a good napper and in my opinion, really NEEDS his nap, if you know what I mean. So, we go to the appointment and I check in. The doctor was called into surgery and he’s going to be about an hour late. Considering this is the second time this has happened, I say, okay, we’ll wait. We brought some books and I thought I could keep him entertained. Well, I thought wrong. By the time the doc got there, Murphy had enough of that sitting still crap and was ready to run. Oh boy, am I in for a treat after Baby #3 gets here. I don’t know what happened to my well behaved little boy. All I know is that this kid wants what he wants and is ready to argue – and test our limits. Fabulous.

Harlie is doing well. We had physical therapy on Monday and she did very well. We are working on trying to get her to walk between two people – without any support. She is VERY scared. But she did manage to take a few steps without assistance. She seems to understand that she needs to balance herself, and she’s even managed to stand still for a few seconds without holding on to something. But, she has no desire to let go. Traci said that we need to work on that every day. So, Brandy and I tried this afternoon. She didn’t do that well and then Tom and I tried tonight, and she wanted NO parts of it – at all. Traci said the hardest part will be getting her to want to do it. That’s something she just has to do on her own. Trust me – you cannot make her. It is very frustrating to see her struggle so much with fear when normal kids don’t even think about it. But Traci explained that she is older now and much more aware, so she’s that much more cautious and resistant. And she has other means of mobility which, in her opinion, probably suit her just fine. When we meet again next Monday we are going to go to the play area in the mall and see if that will get her motivated to go from one place to another. I was really hoping that she would be walking on her own by the time the baby arrived. I would really be happy if she would at least be willing to walk by me holding her by one hand only. She’s made a lot of progress in less than three months before, so who’s to say it can’t happen again, right?

I’ve started to introduce more signs to her. She really takes to them very quickly. Usually you only have to show her once or twice and she’s got it. She knows almost 40 words now. She really shocked us the other day when she came up to Brandy and signed “change diaper” to her. Brandy checked, and yes, she did indeed need her diaper changed. That makes twice that she’s done that.

Her incisions are looking good and the bruising under her jaw is fading (although slowly). I will be very happy when the swelling is completely gone. Her surgery was two weeks ago today. So, just seven more weeks till the wires come out! Not that I’m counting or anything.Well, that’s about it for tonight. And now it is too late for me to mess with photos. Maybe tomorrow…

As always, thanks for checking in!

Take care,
Christy

Monday, June 16, 2008

Quick Update

I can officially say that Harlie is back to her cheery old self. YAY! Her bruising is almost all gone now. Although, unfortunately the swelling is still very much there. The incisions under her jaw are still red and bruised. I wasn’t so sure how to interpret them on Friday, so we took her to her pediatrician, just to be on the safe side. He poked at them and said they were fine and I could discontinue the wound care. Woohoo! So, Friday night she got a bath and I got to wash ALL her hair. It took a few days to get all the traces of the bacitracin out. So, no more greasy hair for my babe! And her head incision looks great and the hair is already growing out a lot from where they shaved it.

This weekend she finally started walking more. It really does make such a difference in my spirit when she is more her happy self.

On Thursday night I went to dinner with a group of moms who all have special needs children. My speech therapist put me in touch with them. We met at a Mexican restaurant and about 15 minutes after sitting down, a Mariachi band started playing. They went to every single table and played their trumpets and guitars. Let me just say this was not very conducive to getting to know one another. But it felt really nice to be in a group of people where I wasn’t the only one with a special situation.

Well, I will have to make this one a short one. I will post some more photos tonight. Today is Murphy’s first day of summer program (he’ll only go three days a week) and he gets swimming lessons and I don’t want him to be late.

Thanks for checking in!

Take care,
Christy

Wednesday, June 11, 2008

Moving along...

Things are still improving. Slowly. But improving. The only thing that is getting worse is that Harlie is stuck to me like glue. She wants to be attached to me 24/7. It’s not good enough that I’m on the floor playing with her, she needs to be in my lap. And sometimes, that’s not good enough, she needs to be wrapped around me. Either way, she must be touching me or she cries.

For the most part her incisions look pretty good. Except for one under her jaw (there are three under there). But I spoke with Dr. Magee’s nurse today and she said as long as it doesn’t look infected then it is fine. I don’t think it’s infected, it’s just bleeding through a little bit. Her trach collar irritates those incisions at night and during her nap. But, there’s nothing I can do about it. She has to have the humidification.

I thought I was going to have to take her out in public today. I didn’t know if I was ready for that. Murphy had a doctor’s appointment and Brandy couldn’t work today so that meant that I would have to take both kids for his appointment. But it turns out I didn’t have to worry about it. The office called to reschedule the appointment (doc was stuck in the OR). Murphy will be seeing the same doc that did Harlie’s nissen. Murphy has to have a relatively minor surgical procedure. But I’ll know more about that next week.

Dr. Magee’s nurse did say to give her a few more days and then I can take her out all I want. She said it might do Harlie some good to get out of the house. Which makes sense. Plus, it will be better when her hair isn’t coated with Bacitracin. The greasy look isn’t really a good one. Ever.

Harlie still doesn’t want to walk. Her occupational therapist came yesterday and she said that maybe Harlie was feeling top heavy due to all the swelling. The bruising seems to be going away a lot faster than the swelling. I certainly notice that more anyway. For some reason only the right side of her mouth can go up when she smiles. Her left side still isn’t moving. Which is strange to me considering all the major work was done on her right (that’s why her right eye was swollen shut).

The derma bond (glue) is starting to peel from the incision between her eyes. I want to pull it. But I must resist the temptation. That incision is where they put the screw that holds the wires. When the wires come out, they will leave the screw in there (it’s titanium).

We have a date for the wires to come out, August 5th. Which is exactly 9 weeks from her surgery and 8 weeks from now (not that I’m counting or anything). They are also going to do the ABR (auditory brain stem response test) on her left ear. They were supposed to do it during this past surgery, but it was cancelled for some reason. So we have to wait 8 more weeks to find out if she has an inner ear (which could mean the ability to hear down the road). Both procedures will happen while she’s under anesthesia and will be a day surgery thing – in and out in one day. Woohoo! Haven’t done one of those before!

We also have a date for her third heart catheterization. That will be August 19th. The last one was last June and did not show good results. HOWEVER, that was BEFORE her lung surgery that changed everything! So, we are all hoping that her better lung function will mean better heart function and results.

I suppose I will try to squeeze in an appointment to see her ENT in DC between the wire removal and heart cath. I am assuming that’s who will tell us if her jaw surgery was a success, and if so, what kind of decann plan (getting the trach out) he will have.

Well, Mike and Marcy had their baby yesterday. He’s a tiny one – 3 pounds, 10 ounces. But he’s doing great and breathing on his own. Marcy is doing well, all things considered. And Lindsay had her baby, she’s adorable. Hopefully I’ll get to see them all tomorrow. Well, that’s it for tonight.

Take care,
Christy

Monday, June 9, 2008

Post-Op Day 6

Well, things are going okay here. Each day Harlie seems to be getting better. I wake up each morning wondering what has changed and how she’s going to look. Right now, to me, the progress seems pretty slow. She finally got a little bit of movement back in her upper lip on Sunday, so you can now tell when she’s smiling. That has certainly been nice to see.

To be honest, Tom and I are still struggling with this one. One thing I am thankful for is that we are in the exact same place at the same time (Tom and I, I mean). We both feel the exact same way. And throughout this journey with Harlie, that has certainly not been the case. We both know all the positives intellectually, but our hearts feel differently. After having a few days at home I have realized that we need our time to grieve the loss of the face we had come to know and love. And we need time to adjust to her new face – a face we still can’t even see. We both know that this will take time. I am asking all our loved ones to please try to understand and just to listen and let us feel the way we feel. I know so many want to make things better for us – but that will happen on its own – in time. We know that. We know we’ll get there, we always have. I trust that months from now, we’ll all be happy and everything will be great.

Murphy has adjusted very well. We were very nervous about him seeing Harlie and he did look a little scared for a few minutes. But he got through it and only asked a few questions. He still doesn’t understand (how could he?) but he plays with her and says she’s funny, just like always. We have definitely noticed some behavior changes, but hopefully getting back into our routine will help with that.

I added some recent photos. I suppose we’ll take one every day for a while to see how she is changing.

So, my friend Heather had a baby boy yesterday. He’s absolutely adorable. And my other friend Marcy, was admitted to the hospital last week for preeclampsia. She’s 33 weeks along now and unfortunately, her condition has gotten too bad to let her continue with the pregnancy. So, she will have her baby tonight or tomorrow (7 weeks early). Please send some good thoughts and prayers their way that everything will be okay. And another friend, Lindsay, will have her baby tomorrow, too (on time). I am just thankful that they are all at the same hospital!

Well, that’s it for tonight. Thank you again for all your understanding, kind messages and support. They have meant so much to Tom and I.

Take care,
Christy

Saturday, June 7, 2008

Post-Op Day 3

9pm FRIDAY

We are home! Everything went well with the discharge. I got a little bit of a scare because the last vitals the nurse took showed that Harlie had a fever. Which, in my understanding, is completely normal after this type of surgery - (when they have messed with your brain). The neurosurgeon was the last to sign off on her discharge (after Tom happened to pass him in the hallway and grab him). He asked, “any fevers”? I was like, uh oh. But he was fine with hers and said that as long as it doesn’t get too high, it was fine. And she could have one off and on for the next week, so don’t be surprised. We just have to look out for signs of infection around her incisions.

Overall she looks better, I think. I know from here on out she will continue to look better as the swelling goes down and the bruises start to change into all kinds of lovely colors. But, it is still hard on Tom and I. Dr. Magee came by to see her this morning and he said that it is probably hurting me a lot more than it is hurting her at this point. Which is probably true. Well, I hope it’s true anyway. She just looks like she is hurting so much and no parent wants their child to hurt – period.

And I miss her smile. And I miss her sweet little face. I look at old pictures of her and it is just weird (and sad) to know that I won’t see that little face again. I know she will still be her, and that her personality will shine through (it already has a little bit) but nothing will change the strangeness of it all. From what I’ve learned about reconstructive plastic surgery to the face – my feelings are completely normal. I don’t need a pep talk and I know all the positives (they are what get me through the tough times, after all), but I feel the way I feel and nothing but time will help that. So often I find myself wishing time away…

Well, I’ve cleaned her incisions twice now. Not fun. And unlike when the nurse did it yesterday, it seemed to bother her. Which made it not fun even more. Hopefully we will both get used to it and each day hopefully it will bother us less. I only have to do it for one more week.

So, as I was trying to get her ready for bed (not the normal smooth process tonight) Murphy somehow grabbed the cup of half peroxide, half water solution that I made for her incisions and..…you guessed it….. drank it. Ugh. What is up with my kid??? He was not happy about that at all. Now keep in mind that I know nothing about peroxide – despite all my Harlie training – I am NOT a nurse – so I looked at the label and it says to call poison control if swallowed. Luckily, I only used a very small amount of peroxide, so I know it wasn’t much. Tom called poison control and she said that he will be fine and worst case is he’ll throw up. He probably just burned his tongue and throat a bit (and gave us mild heart attacks). That was over an hour ago, and he’s fine now. Just another perfectly normal boring night in the Holton household. You can admit it – you want our life, don’t you? I know. I get that all the time. (Hey, even when I’m tired and irritable I still have a sense of humor.)

Well, that’s all I can do tonight. Each night from here on out I am going to look forward to seeing more and more of my sweet little girl’s new face.

Thank you for all your kind words of support. I appreciate each and every one more than you know.

Take care,
Christy

Friday, June 6, 2008

Post-Op Day 2

10pm - Thursday

For the most part, today was okay. I forgot to mention that Tom had to leave last night (Wednesday night) to go home so he could work today (Thursday). I know he has to work, just part of the deal with a 100% commission job. But I loved having him with me for two solid days during this hospital stay. It’s hard to explain, but it just makes things easier to handle when he’s with me. Plus, he had to take the car.

So, this morning (Thursday), Melissa took me to the hospital and luckily, some friends of Melissa’s helped her out with her daughter so Melissa could sit with me at the hospital for a little bit. When we got there, Harlie’s eye was worse. It was turning black. Still hard to look at. It takes me a few minutes to get myself together and get used to how she looks. It’s still pretty shocking at first. Melissa is great with it because she is a post-surgical nurse – and she knows that kind of stuff. Harlie kept on rubbing her bad eye. It hurt my stomach to watch her dig at it. For a little while this morning, I just didn’t know how I was going to take care of her when we brought her home. I have to take care of all her incisions three times a day. Ugh. I don’t like even looking at them, much less messing with them. And three times a day?!?! For weeks!!! God give me strength!

But I got to hold her. She sat up in the bed and, oh boy, she looked rough. But holding her helped me (and her) a lot. They said that sitting up would help with the swelling. Her head is still bleeding a little, but hopefully that will stop by the time we bring her home. Anyway, I held her for most of the morning and then when I got back from lunch, my mom was holding her. I would say that she was able to be held for most of the day, which is great.

One thing I wasn’t prepared for was the smell of dried blood. Not pleasant. And it’s coming from her mouth. Her nurse today was awesome and called the surgeon to ask what she could do about it. She used some sponges on a stick and wet it and then cleaned what she could get to. Then suctioned out the water. Wow what a difference that made. Her lip is still very swollen, but at least it was finally “clean”.

My mom and sister came down for the day. When they got there, Melissa and I left for lunch. Then she dropped me off back at the hospital and for the rest of the day, we just switched off (because they only allow two visitors at the bedside).

Later on, her nurse showed me how to clean her incisions. All of them look a lot better now that she was able to get off all the dried blood. So, I don’t feel as afraid as I was about cleaning them. I’ll be fine. And it didn’t seem to bother Harlie at all, so that will make it easier for me, too. Luckily, during one of our switches when I was out of the PICU her nurse and the respiratory therapist changed her trach ties - they had not been changed since Monday night (and they get changed at least once a day normally - Ewwww!!!!). I was not looking forward to doing that, I can tell you. The trach ties are WAY too close to her incisions under her new chin for my comfort. But they said she did great and didn’t seem bothered by it, so I should be fine doing it next time. They also gave her a bath and washed her hair. That had to make her feel better.

Throughout the day, the swelling in her eye seemed to go down and at the same time it got blacker. And her incisions around her jaw are starting to bruise – along with her right ear – even on the inside, which is strange looking. But, everyone kept on coming up telling me how great she looks (which sounds really weird – you know, with her looking so bad and all). But I know they mean compared to what she could look like – clinically, I guess. So, that’s good.

Oh, and earlier, when the nurse called the surgeon, she told me he asked a few questions about how she was doing and said that if I was comfortable, I could take her home – TONIGHT! I was like, WHAT?! Is he CRAZY?! And for the first time – in all her many hospitalizations – I said, “no way”. She needs another night here, I need another night with her here and we need some time to prepare Murphy for her arrival and appearance. So, Tom talked to Murphy tonight, showed him her pictures and he will leave in the morning and we’ll be on the road before noon I expect.

They kept on saying that she would be transferred to the “trach pod” as they call it. But at 6:30pm, they told me that she would stay put in the PICU and be discharged in the morning from there. Which I was happy about.

In the afternoon she signed her first sign since surgery, “night night”, which is a good sign (that she wants to communicate I mean). As it got closer to 6:30, she was resting comfortably. I can’t remember if I explained or not, but they kick the families out of the PICU between 6:30 and 7:30 for shift change. Right at 6:30, she woke up suddenly and started crying (like she knew I was about to leave or something). She wanted me to hold her, so I let her sit up in bed and she went crazy trying to get in my arms. Then a different nurse (a guy) came to help (our nurse was very busy with the baby in the next bed). He said he would hold her and took her. Well, she was NOT happy about that and reached out for me. Then she signed “mama”. Oh, my goodness. Leaving her was the hardest thing EVER! I asked him if I could just hold her for a minute to help her calm down and he said NO! Jerk. And we had to leave.

Well, overall, even though the morning was rough – I left the hospital feeling pretty good (well, other than leaving my sweet girl crying for me, which was pure agony). I called the PICU after my mom and sister dropped me off at Melissa’s and her night nurse (the same one she’s had every night, which is great) told me that she was resting comfortably. Anyway, I definitely feel more confident that I will be able to handle her care now. And I have a feeling that she will look better in the morning, and every morning thereafter.

Oh, and the anesthesiologist that I loved came by to visit Harlie this morning. I was shocked. That has never happened. I loved him. So, I got a photo with him. He really made me feel better about this operation and that’s a big deal to me. It was nice to be able to tell him that.

And now, after writing this and thinking about the day, I’m excited about tomorrow. I feel like today was a big day for me. I feel like I made a lot of progress. And it feels really good to be excited about taking her home.

Oh, I uploaded some more photos. Thanks again for all your messages. I really appreciated reading them when I got “home” tonight. It gives me something to look forward to each night. Thanks for doing that.

Take care,
Christy

6am - Friday

I just spoke with Harlie's night nurse and she said that she is awake and signing like crazy. She said that everytime she goes near Harlie's bed, Harlie reaches out to her to be picked up. She's such a snuggle-bug! She said that another nurse knows a little sign language and was telling Kasey (her nurse) that she was signing "mama", "daddy", "please" (my girl knows her manners!), and "baby" (when Kasey showed her one of our family photos at her bedside). I suppose she was talking about herself. And she said she was hitting her fist on her chest - the sign for "Murphy" but of course, the nurse didn't know that one.

She also said that she hasn't given her any pain meds since 9pm last night and she's doing fine! Well, I can tell you - I won't be going that long between doses! I told them yesterday that I would need to be briefed on what is REALLY too much pain meds (you know the label is always so conservative). And if I couldn't give it to her, I would have to give it to myself! A lot for you, a little for me....

Anyway, I woke up very early this morning (around 4ish) because I am just so darn excited. Oh, and the nurse said that she can open her right eye now! YAY!

Well, just wanted to share the good news that Harlie is communicating and seems to be doing well.

Thursday, June 5, 2008

Post-Op Day 1

Well, they were right, she looked worse today (Wednesday). But, honestly, not as bad as I was expecting. I forgot that they told us yesterday that normally they can’t open their eyes because they are swollen shut. Luckily, only one is swollen shut – her right eye. That is the side that had the most trauma. They harvested the bone from the right side of her skull (cut her from her right ear to the top of her head) and she was lying toward her right, so all the blood seemed to pool on that side.

They removed the bandages today. Karen (Dr. Magee’s nurse and coordinator) said that after the bandages are removed the swelling will be more spread out over her head and not so concentrated in her face. She said that the peak will be on the 3rd day and then it will get better from there on out.

Dr. Magee and Dr. Rosenblum came by today. Dr. Magee apologized for missing us yesterday. At least that was something. He said she looks great. They also said that they are going to schedule the wire removal for 8 to 10 weeks from now. So, we’ll just have to see what they give us. She will need anesthesia, but it will be an outpatient procedure, which is good.

They also took out the drain that was on the right side of her face. She is definitely bleeding less, but still more than I am comfortable with. Today she flipped herself over on her belly (scared me to death and I had to turn away – luckily the nurse was there when she did it) and I could see all the blood that was on the bed. I will be much happier when she’s not bleeding anymore. Well, duh, right? Heck, for that matter, I’ll be much happier when it’s the end of August and all this is behind us!

They started feeding her a little today. And they stopped the morphine and sedation meds. Normally, I’m glad about getting off the IV meds, but, I have to say, I would rather her sleep through as much of this as possible. She opened her left eye today and looked at me and started crying. She doesn’t cry much, but I think it’s because it hurts – to cry, I mean. She starts to, and then stops pretty quickly. She reached out her arms to me, which broke my heart. I can only imagine how she must feel. She looks like she’s been hit by a train. The pictures just don’t do her justice. She looks much worse in person.

The plan is that she will stay in the PICU tonight (Wed), and possibly move to the floor tomorrow (Thurs). The good thing is that here they have a place for trach kids. It only has 5 beds though, so if there’s an open bed there, that’s where she’ll go. I’m fine with that. Her trach has always been the issue with the floor with me. Anyway, then, they are thinking they will discharge her on Friday. Frankly, it is VERY hard for me to think about taking her home. This is the first time I’m not rushing her out the door. It is just hard to believe that she’ll go home like that. I joked that I cannot take her to Murphy’s school to pick him up any time soon, that’s for sure.

Well, it is late and I really need to get some sleep. I added some photos. Some might consider them “rough”, so be prepared. I did spare you the one of her head incision. Once it’s cleaned up a little more, it won’t look so bad and then I can show you.

Thank you again for all your messages. It has been REALLY nice coming “home” (to Matt and Mel’s house) to read them. What a difference it makes to know that I have your support.

Take care,
Christy

Wednesday, June 4, 2008

Jaw Surgery Info...

Wow, does it stink to not have wireless in the hospital!!! All my thoughts are stuck in my head and now there's just not enough time to write about everything.

Yesterday was agony, as was expected. We were the second family to arrive at day surgery, shortly before 5:30am. They weren't even allowing people up the elevator yet. So, when they let us in we were the second to sign in. We were the only family who waited in the waiting room ALL day. They called every hour during the surgery. I have to say that I liked some aspects of CHKD. Definitely not as high-tech as others (no pager system, no wireless, etc.) but more personable I think.

Surprisingly, I felt very comfortable with anesthesia (one of my greatest worries considering her heart issues). The doctor was awesome and I liked him a lot. One of the first things he said was that Harlie had been on his mind all weekend. And he said he meant it. He knew her history by heart, and only had a few questions. Then, after she had been in for more than an hour, he came out to the waiting room to tell us what was going on and how she was doing. He said the funniest thing. He said that he wanted to come out and talk to us because he knew we would not be satisfied with what they normally say when they call. He said that he overhears the nurse call the parents and say, "well, the surgeon is doing the surgery...". Gee, thanks for the great info... Well, we certainly appreciated his humor, and his thoughtfulness.

We've never had the anesthesia doc come out and talk to us before. But I know a lot more now about where they need to put the lines and I try to spare Harlie a bit of bruising by telling them which places simply don't work anymore. They never listen and each one thinks "they" have the skills to do it. I'm always right. And I don't mean that to brag. So, he came out to tell me about that stuff, which we appreciated a lot.

Then the general surgeon who put in all her lines came out to tell us more about that. Her femoral arteries in her legs (the ones they like the best) are toast. They haven’t worked for a year now (since her 2nd heart cath last June). Which I told them. Yet, they keep trying… So, they had to go for her subclavian artery (below her collar bone). She has another arterial line in her wrist and a regular IV in her foot. Hopefully the subclavian one will come out today. That was how they gave her blood during the surgery. I think the surgeon said they had to give her a liter and a half (but don’t hold me to that). We were very appreciative that a general surgeon put in her lines. AND came out to tell us how it went. So, overall, we were really impressed with CHKD.

There were two things I didn’t like.

One was that neither the neurosurgeon, nor Dr. Magee came out to talk to us after the surgery. So far we have always talked to the surgeon afterwards. I do know that Dr. Magee had a 14-hour surgery scheduled AFTER Harlie’s (he’s crazy and I see that his energy has not decreased since I left Operation Smile 11 years ago!). So, he had to run into that one. Nuts. I suppose that’s the same deal with the neurosurgeon – but still, Harlie’s our daughter and he just cut open her head and exposed her brain, and it would be nice to know it went perfectly. Us picky parents…

The second was that we sat there, all day, receiving hourly phone calls letting us know that things were still going okay. At 2:15pm she called to say they were “wrapping things up” and surgeon would be out shortly. TWO hours later, we are still sitting there. I knew that we had been forgotten, yet AGAIN. All day we sat there watching the system work for every other parent! Ugh. This is the 3rd time that communication has broken down after a surgery. So, I asked the lady that was there in the waiting room to check, but she said they always say that and it always takes longer than we think. I asked her to call back there, but she didn’t. I just thought it was strange that we went all day getting hourly updates and then two hours with nothing – after saying it was almost over. Luckily, at 4:15 the speech pathologist (Beth) who works in Dr. Magee’s office came by to ask us what we had heard (nothing) and she took us to find someone.

We found Karen, the nurse coordinator for Dr. Magee and she found Dr. Rosenblum (Dr. Magee’s partner who assisted with Harlie’s surgery) and got him to come out and talk to us.

He said she did great and she looks really different. Both Beth and Karen had already been to see her in the PICU and said the same thing. I asked “different bad, or different good”? They all said “different good”. Dr. Rosenblum said that she will have a major underbite for a while. They have to bring her bottom jaw forward and up past her top teeth to get it to set in place and after the wires are gone and she grows a bit, it will recede and look more normal. Karen told us it could take a few months after the wires come out – it is different for each child. He also said that she will probably be in the PICU for at least 2 nights. After that we’ll just have to see how she does.

Side note, Beth was great and had already found us earlier in the day to tell us that she spoke at a conference on Monday and spoke about Harlie. She said that she told them about how all the odds were against her and after a long hard 20 months, she is signing over 30 words and doing great. Then she said she would watch some of Harlie’s surgery.

I don’t know if you remember me mentioning that her surgery was scheduled during a program called “Physicians Training Program”. It is an annual event with Operation Smile where they bring docs from all over the world to the US for 2 weeks or so to learn about craniofacial procedures and stuff. Back when I worked for OpSmile, I was one of the ones who “chaperoned” them around for some of the fun stuff – like Harbor Fest, Busch Gardens and their favorite - a trip to Wal-mart (yes, a highlight for them). It was a lot of fun because most of them are from developing countries where they have very little, if not nothing.

Anyway, they video the surgeries and show them on a big screen in an auditorium at the hospital for all the docs. Beth said that she watched some of it and that Harlie did great. I have to admit, that I asked the neurosurgeon at our visit two weeks ago if they let parents watch. He said, without any hesitation, “absolutely not”. I know, sounds morbid and sick, but, waiting for hours yesterday, I wanted to go find that auditorium, just so I would KNOW what was going on. The waiting is just horrendous! But, obviously, I did no such thing.

So, back to Harlie, after talking with Dr. Rosenblum, Beth walked us to the PICU to go see her. The anticipation was killing me. Knowing that everyone else knew what my little girl looked like – and I, just – HER MOTHER – did not, was agony. Well, even though I tried to be prepared, the emotions of the day, and seeing her like that, and looking “different” got the best of me and I could not help but just cry. I haven’t done that in a long time. I think they all felt sorry for me, but I told them with this situation AND the pregnancy hormones, what could I do?

She has kissable cheeks now! Well, at least it looks like she’ll have them, which is wonderful. As you can see from the pics Tom uploaded last night in our zombie like state, she is completely bandaged up. And there is a lot of blood. There was blood after her heart surgery – but it was all contained in tubes. To see it coming out of her mouth and out of her trach is very unsettling.

Because they had to harvest the bone from her skull, they had to cut the dura (the covering of the brain) – I think – to relieve pressure and it is bleeding and draining down into her throat – causing her to cough it up and out her trach. But since she has a leak around her trach, it comes out the stoma, too, so it is all around her trach. They are suctioning out what they can, but there’s only so much you can get to with her mouth being wired shut.

Her bottom lip is very swollen and now you can see her bottom teeth VERY clearly, which is weird. They all said that she will look worse today. I am trying to be prepared, but it is hard to prepare yourself for something you really can’t imagine. I mean, how do you picture your child looking different? I have tried, for months, to picture her with a chin, but it has been impossible. I loved her little face the way it was! Now it is gone. And there’s a new face that I still can’t see!!

I am so glad that Tom is able to be here today. It is so much better when we are together. But if she doesn’t get discharged tomorrow, then he will probably have to go back to work on Thursday. And then he will have to come back on Friday because hopefully that is the latest she will be here.

Well, I need to go. We aren’t allowed into the PICU until after 8:30am and we want to be there. I will try to write when we get back. We have decided to stay at our friend’s house instead of moving to the Ronald McDonald House. More comforting.

Thank you for all your messages and support. I know many of you don’t know what to say, but it is just nice to know that you care. This certainly is a huge hurdle for us. And hopefully a life-changing one – in a good way!

Take care,
Christy

Tuesday, June 3, 2008

Jaw Surgery Status Reports

Hi, this is Christy's mom. Christy just called to say that the hospital does not have wireless and she, therefore, has no way to add a journal entry. She has requested that I relay information to you as it becomes available.

All we know at this point is that they took Harlie about 7:45 and they estimate that the surgery will take about six hours. More later . . .

5:00 p.m. update:

I just talked with Christy. Harlie is out of surgery and Christy and Tom have been with her. The doctors said Harlie did well. Christy will be able to get to her computer this evening and will provide more detail then.

9:00 p.m. Update.

Too tired to update...she's doing fine. Take a look at the photos under Baby Albums. More in the moring after some sleep.

Love, Dad and Mom

Monday, June 2, 2008

Surgery tomorrow!

Very quick update. We are packing to leave tonight (Monday). We are going to stay with our friends, Matt and Melissa who live not far from the hospital in Norfolk tonight. Then, we might move to the Ronald McDonald House, which is right across the street from CHKD (Children's Hospital of the King's Daughters).

We have to have Harlie there at 5:30am. They said she is first case. I have no idea how long the surgery will be. Will find that out tomorrow.

I will update as soon as I can. Thank you so much for all your well wishes. I am on auto-pilot right now, just putting one foot in front of the other.

Talk to you soon!
Christy