I am a girl who fell in love, got married and wanted to have a regular ol' ordinary family. What I ended up getting was everything but.
This blog chronicles our journey as a family who was blessed with a very special child.
From the day we found out that she had only a 5% chance of living to the present, life has been a true roller coaster of emotions. And most surprisingly, more rewarding than I ever thought possible.
Click here to contact me.
Due to the requests of many caring people, our family set up a legal trust fund, "THE HARLIE FUND" to help with Harlie's care. You may click here for more information or click on the donate button above.
The Harlie Crew
We invite each fan of Harlie to join the following initial crew members and commit to make a monthly contribution to The Harlie Fund.
*Roger Smith DR Racing
*The Lawyers and staff of Kane, Jeffries, Cooper & Carollo, LLP
With Christy's willingness to share, we have worried about, prayed for and rejoiced in the accomplishments of a remarkable girl. The members of The Harlie Crew together show their support by contributing monthly. If you would like to join us, please call Bill Jeffries at (804) 288-1672.
So, we had the pulmonary appointment today. To be honest – it was a little bit of an emotional day for me. I guess being in that waiting room with other parents with their special needs kids – well I guess it took me back to being at the hospital again. We are part of a group of people that no one wants to be in and that’s just the way it is. I did get to talk to another mom – her 3 year old daughter has a trach. I think of Murphy and all the joy that we get out of hearing him laugh and talk (at 2 years old) and that mom has never heard her daughter do those things. We know what we’re missing, and that just makes us sad sometimes. We changed her trach on Sunday and in the split second the trach was out she made a sound. I had the new trach in before we even realized that she made it. Another mom told me that they would take a few seconds to put the new one in so they could hear their daughter cry. Ugh – the simple things we take for granted…never again!Well, overall, the appointment went fine. He educated us on all this oxygen stuff we’re dealing with. I’ll spare you the details – basically, because of her heart defects, we cannot expect her oxygen saturation levels to be in the high range (like a normal person). Her “normal” is just lower than usual. So, until they repair her heart, she’s going to need supplemental oxygen. And your body needs oxygen to grow – so clearly we don’t want to hold back now! We feel much better now. We were thinking that it was a goal to get her off the oxygen – and we were failing. Now we know better and that makes it much easier for us to handle and accept. Our nurse started on Monday. It was weird to have a complete stranger in my house taking care of my baby. But I think the relief of having some help outweighed the uncomfortableness. She will work M,W,F totaling 40 hours a week. We’ll see how that goes and make adjustments as necessary. Have you seen that commercial where a mom is talking to the babysitter and you think that they are going out to see a movie – but then the mom just walks into the living room to watch the movie on their own TV? For some reason that comes to mind. Well, that’s it for tonight. Hope you are all well.-Christy
I hope you all had a very Happy Thanksgiving. We had a nice time here at home with family. I was very thankful to have my little family all safe and sound at home.
Well, we went to the pediatrician on Friday. It was a big day for Harlie. She got 6 shots!!! After all she's been through, she took it like a champ. I, however, did not handle it as well. She had the normal 4 immunizations, plus a flu shot and RSV shot. Our doctor was very nice and went on ahead and gave all 4 of us flu shots so Tom and I didn't have to go elsewhere.
Oh, Harlie weighed in at 6 pounds, 9 ounces and she is 20.25 inches long. We are so happy to start to see some weight on her. I notice it most in her head and her fingers.
Well, as pretty much expected, Harlie and Murphy had fevers for the next 2 days. Harlie seems to be getting better. But Murphy is getting worse. Just a typical cold, but I am dreading Harlie getting it. Since the trach stops the air flow and secretions from making it to her mouth and nose - everything will have to come through the trach. Basically, it would be like having to breathe through your stopped up nose - and not through your mouth - when you have a cold. So a typical cold for her could be very bad.
Unfortunately, we are really battling the oxygen. We had to go higher than we ever have this weekend. We are hopeful it was because of her fever and that we will be able to wean her back down soon. We had to up her heart medication and reduce her fluid intake a bit to help her heart not work so hard. Luckily, we have an appointment to see the pulmonologist on Tuesday. Hopefully he will be able to shed some light on what we can expect in the near future.
On the positive side, we have a nurse starting tomorrow! She came over on Wednesday night to meet us. She seems nice, but it is absolutely TERRIFIYING to leave our special little girl with a complete stranger. The nurse will be here 3 days a week and 2 nights a week. I will admit that as terrified as I am, I am really looking forward to getting a break. I am actually looking forward to cleaning the upstairs, doing laundry and being able to freely roam around the house! (because of Harlie's equipment she has to stay in one place and I always have to be very close by).
In time, I am hopeful I will be able to run some errands and maybe do some things with Murphy outside the house. Well, it's time to feed Harlie.
Well, I have been very busy the past few days setting up appointments. Henrico County has an Early Intervention Program (well every county has one) that provides occupational, physical and speech therapies for county residents. The coordinator came over on Monday to complete the paperwork and get the evaluation underway. They have a month from now to get that done. I guess they will determine what her needs are and set up a plan to help her.
I also spoke with the Feeding Clinic at the Children's Hospital here in Richmond. Evidently their Feeding Clinic is very well known and people come from all over the country for help. She said that she will get us in within the next two weeks. She is going to get us an appointment with a doctor that I called last week and was told the next available appointment was Feb. 27!!! Isn't that something? I'm very glad that we'll get to start that so soon. I am very anxious to see when we can start to feed Harlie by mouth.
I talked with a few nursing agencies. So far, no luck finding someone. I'm thinking that the holidays aren’t the best time to be looking (especially Thanksgiving week!). I've been told that we probably won't be able to find anyone for the night shift. Originally we asked for 3 nights and 3 days, so I asked for 5 days as a backup. Maybe that will help.
It looks like we'll be going to see Dr. Magee (plastic surgeon) in Norfolk in January. I am hoping that he'll be able to give us a good idea of what we can expect in the next few years. I think just hearing what he can fix and what he can’t will help me a lot. Overall, I think Harlie is doing really well. And I think Murphy is doing well with her, too. He doesn't seem to notice her issues. Except tonight, he pointed to one of the scars on her face and said she had a boo boo. He likes to kiss her on her head. Tonight he said, "Night night Harlie, see you later". It was pretty funny.
Well, Tom and I are hosting our first Thanksgiving. Tom will be doing the cooking, of course. (You would only want me to cook if you wanted nachos.) I am really looking forward to it. We do have a lot to be thankful for this year. Even though it breaks my heart to think of all Harlie has to go through - she's here.
Well, that’s all for today. I hope you all have a Happy Thanksgiving.
As you can see, we added some recent photos. Look in “My Baby Albums” for more.
The clear plastic mask-looking thing you see in the photos stays in front of her trach as much as possible. It is called a trach collar. It heats and moisturizes the air she breathes, since her mouth and nose can’t do that for her. That equipment is not transportable. So, when we go out we have to put an HME (heat moisture exchanger) or “artificial nose” over her trach. You can sort of see one in the baptism photo. That device has some spongy-type material in it that captures the moisture when she exhales and then puts it back in when she inhales. But she can only be off the collar for small periods of time. The dry air can dry her secretions and could plug the trach.
I’m told that when we get through the winter and she’s stronger, we can start to take her off the collar more and for longer periods of time. That will certainly be a welcome change.
So, I finally had a few minutes to spend some time on the computer and do some searching. I know that you are all busy - but just in case you are interested, I posted some links under "My Favorite Links". I found a "Famous People who have had Trachs" page. Pretty funny.
Well, it's time to feed Harlie. Talk to you soon, Christy
There is an online Pampered Chef fund-raiser being held for Harlie that will run until Sunday, December 10th. We want to have a fund-raiser for her and her family because, even with insurance, medical bills add up very quickly. The Pampered Chef donates 15% when a fundraiser goes to $600 or above and I am donating all of my commission from the sales. Thank you in advance for your support!
There are three ways to help Harlie and her family.
#1. Please send this to all of your friends, family, co-workers, and neighbors. You'd be surprised at how many people who might not know Harlie would still be willing to help. We are a kinder society than we get credit for.
#2. Place an order, (instructions follow).
#3. Book a catalog/online show. For every "booking" received, The Pampered Chef donates another $3 to Harlie. I know it doesn't sound like much, but it can add up. If anyone wants to book their own show, I can mail catalogs or the show can be done online, just like this one. This is a great way for you to earn something for free or reduced price that might be a little out of your price range to buy at regular price.
Things to know before placing an order:
We have 60 new products that became available Sept 1st. You can view them now on the site. If you have any questions, e-mail me at email@example.comHow to order:
1.) Go to my site: (there is a link in "My Favorite Links")www.pamperedchef.biz/ginabwithpc
2.) Click on "Order Products" at the bottom of the page.
3.) Go to option 1. “Already invited to a show” Type "Harlie" in the first yellow block, then hit search.4.) Click on "Harlie/Kristie Christiansen" in blue (Kristie is Harlie’s Aunt).
Show closes on Dec. 10th so get your orders in now. You will have your products by Dec. 18th. Please choose to have your products shipped to your own home (unless you live really close to Aunt Kristie in Erie, PA). Shipping costs begin at $6 and max out at $14, no matter how high your total gets (combine orders with friends to save on shipping).
This fund-raiser is a great way for you to take care of some of your holiday shopping. This is also a wonderful time to pick up those tools you've been wanting for your own kitchen, or entertaining needs. We have many products priced under $15 that are perfect for hostess gifts, or little thank-yous for the people who have been kind to you all year.When you place your order, you can use your credit card and feel safeknowing it is a totally secure transaction.If anyone reading this is considering becoming a Pampered Chef consultant, I would love to answer any questions you might have. I love the flexibility and FUN in doing this. It works great as a part-time, full-time, or hobby job. If you sign with me, I will give you a present when you qualify. And yes, we can be on the same team from different states. :-)Thank you for your time. Let's all try to help this wonderful family lighten their financial burden. And let's all continue to pray for Harlie.Thank you again!Gina Barnes, Independent Kitchen ConsultantThe Pampered Chefwww.pamperedchef.biz/ginabwithpc(301) 570-0206Knead dough? Talk to me about our part-time, full-time and hobbyopportunities!
So, she gained 5 ounces in one week! She's now a whopping 6 pounds, 3 ounces! We are so glad to see that she's gaining weight. We even upped her volume again - to 55 ml every 3 hours. Before each feeding we check her residuals. That means we use a syringe to pull the stuff out of her stomach to see what is left over from the last feeding. Since she can't tell us if she's hungry - or NOT hungry, this is the only way we can make sure that she's digesting all the food that she's been given, and that she has room in her belly for the next feeding. Lately she's had virtually no residuals, which tells us she's ready for more volume per feeding.
We saw the cardiologist today. Everything looks good and on track for her next surgery. We are shooting for March. They want her to be bigger and stronger - and out of the winter season.
As far as the oxygen situation goes, as long as she responds to the oxygen positively, then we know that it is not a heart problem, it is a respiratory problem. If we put her on oxygen, and her numbers don't go up, then we know its a heart problem. So, we were glad to hear that.
As far as the surgery, it looks like they are leaning towards doing a "double switch". I don't know if we've given details of her heart defects... but she has "congenitally corrected transposition of the greater arteries" (her left ventricle is on the right, and her right ventricle is on the left), and "VSD" (which is a hole between the ventricles of the heart). With the transposition (in basic terms), the big ventricle is supplying the blood to her lungs and the small ventricle is supplying the blood to her body. So, the small pump is doing more work than it should, and the large pump is doing too little. That's really all I know and understand right now. I do know that the surgery is a big one, but we can't think about that now.
Well, that's about it for tonight. Talk to you soon! -Christy
So, we had the evaluation today to determine how many hours of nursing care we qualify for. We qualify for 12 hours of nursing care a day. It's pretty weird (and scary) to know that we have a situation that requires that kind of care. Now we just have to figure out what kind of schedule we want. Then we have to find the nurses to fill the positions and hope that we are a right fit for each other. The coordinator said that most of the nurses like babies, so maybe that will make it a little easier (I hope!)
Tomorrow we have another pediatrician appointment. I think we will have those weekly for quite a while. Then in the afternoon we have our first cardiologist appointment here in Richmond. I am anxious to see what he has to say. I am getting a little concerned about the oxygen situation. Now it seems we can't take her off. I hope that doesn't mean something bad is going on with her heart. Hopefully he can reassure us a bit.
I also spoke with the county regarding the occupational, physical and speech therapy program. They are coming out on Monday to start that. I am anxious for that, too, (well, clearly I am anxious for everything) because occupational therapy will help us with trying to feed her by mouth. I am not expecting much, because in order for her to pack on some weight, we need the g-tube - for now anyway. Other than the developmental delays not eating by mouth causes, I would like to have one less tube to have to deal with. It is a pain with her baths (can't get it wet until it completely heals) and it is a little awkward with her clothes. My mom put some button holes in her clothes for the tube to stick out so that should help. Until she did that, Harlie could only wear button-up clothes, which surprisingly, is pretty limiting.
Well I spoke to the mom of the little girl that had a trach today. That was such a great conversation to have! As it turns out, her daughter didn't have to have the expansion surgery as I thought. Just her normal growing opened up her airway enough to remove the trach. That's even better news! There are definite negatives with doing that kind of surgery at such a young age. So, hopefully, it will happen on its own for Harlie, too.
Well, it is getting late and it is time to get Harlie upstairs. Take care and talk to you soon! -Christy
So I didn't hear from the person who is supposed to do the evaluation for home nursing. Hopefully I'll hear from her tomorrow. At first I was pretty against home nursing. But, after more than a week at home with Harlie on our own, I can definitely see some benefits. I have a ton of questions that would be best answered if someone could see what I'm talking about. So, we'll see what happens.
My pediatrician gave me the name and number of one of her patients that had a trach till she was two. I will try to call her tomorrow. It would be so nice to talk to someone else who has been through this before. Her daughter didn't have Goldenhar's, but she had the underdeveloped jaw (called Pierre-Robin) and they were able to do a procedure to expand her jaw enough to secure an airway that allowed them to remove the trach. We are hopeful that the same could be done for Harlie. The sooner that trach is out, the better for all of us.
I am told that most of the repair to the jaw is done after permanent teeth come in. As heart breaking as that is, we would much rather do what's best for Harlie long-term. Of course, I have already spoken to Dr. Magee (founder of Operation Smile, where I used to work). We had a good conversation over the phone when Harlie was about 2 weeks old. (For those of you that don't know, he is a cranio-facial reconstructive plastic surgeon.) I was feeling very overwhelmed and incredibly sad at the time and he made me feel better. So, as soon as we are able to make the trip to Norfolk, we'll go and see him and hopefully get some sort of plan.
After spending more than a week with Harlie at home, I can finally say that I'm getting to know her. She makes the funniest facial expressions! She was awake a lot today which was really nice. Well I wanted to post some pictures up, but the night has gotten away from me and now I have to go.
I hope you are all well and I'll talk to you soon! Love, Christy
So we went to see the pediatrician today. I actually feel bad for her (the pediatrician) because she certainly has her work cut out for her with us! I am so glad that her nurse knows so much about trach care, too. Today she gave me a mini-lesson. It is very clear that I definitely need some home nursing care. It would be so nice to ask someone what her noises mean, whether I should suction or not, use saline when I suction, or not, is it normal when she does this or that, etc.
The coordinator is supposed to come to our house on Monday to do an evaluation to see how many hours of home nursing we need. So, we'll see how that goes.
Well, Harlie gained 3 ounces since last Friday. So, that's good. Her doctor increased the volume a bit, so we'll see how she tolerates that. Maybe we'll pass the 6 pound mark by next Friday.
So, a few weeks ago we were having chinese food for dinner. For once I got a good fortune in my cookie, "You will have good luck and overcome many hardships". I thought that was kind of funny. I think it is kind of hard to have good luck AND overcome hardships. Seems to me if you have good luck you shouldn't have to overcome hardships - but I'll take it.
Well, we went to see the eye doctor today. Overall I think it went well. Unfortunately, we won't be able to do anything to repair her eye till she's at least 6 months old. But, at least now I understand why. And that makes it easier for me to accept.
Her eye lid problems are pretty complicated. We have to see exactly what her muscle ability is before they go and do any kind of surgery. The obvious fix could possibly damage her vision - and it just isn't worth the risk. The good news is that her eye anatomy appears to be good, so it is assumed that she can see fine. So, she will be monitored monthly until surgery.
Well, we are still battling the oxygen thing. She seems to do well off of it for 12 to 16 hours, and then she needs it again. I guess this will be a longer deal than I thought. We will see a doctor about that at the end of the month. Just more stuff to learn I guess.
We see her pediatrician again tomorrow morning. I am very anxious to see how much she weighs. She is such a string bean right now! She really needs to get some fat on those skinny cheeks! Well, I think that's it for today.
I hope you are all well. I don't know if I've said it before - but thank you for all the kind words you have posted in our guestbook. I just can't tell you how much it has meant to us.
So, things are going well, I think. We are certainly getting the hang of some things - and still trying to figure other things out. I think I finally got the feeding thing sorted out. Getting the milk to go into her stomach at the right rate has been trial and error so far. We tried gravity feeding for a while, but the supplies sent to us weren't really appropriate for that. So, yesterday I tried using what they sent us (bags with a feeding pump). Today, the feeding pump was giving me trouble. It wasn't letting milk get through the tube. So, I fiddled with some things and then all of a sudden - the milk was gone! She got fed in about 5 seconds!! Luckily, she tolerated it and didn't spit it back up. But I still felt terrible. But, now I'm straight. So, that won't happen again, I hope. Other than that, I think things are going better than I thought they would. We took her off oxygen this morning and she seems to be doing okay without it. Hopefully, she'll stay that way. We have an appointment with an eye doctor here in town on Thursday. Her left eye has been the hardest thing for me to get used to. It just looks like it would be bothersome. And I hate to think that she can't protect it. The doctors at Children's say it isn't urgent - but that just doesn't sit well with me. I want a plan. So, we'll see what this doctor has to say about it. Well, it's feeding time, so I gotta go. I hope all is well. Take care,Christy
Dear Family and Friends of Tom, Christy, Murphy, and Harlie, None of you know me, but I am the social worker who has been working closely with Christy, Tom, and Harlie at Children’s National Medical Center. It has been a privilege getting to know Christy and Tom, and also to journey with them as they welcomed precious little Harlie into the world. Tom and Christy have shown me that they are loving, caring, devoted, assertive, and wonderful parents. And I have no doubt that Harlie has the best possible parents to be by her side throughout her life’s journey. How fortunate Harlie is to have been born into the family that she was. As you all know, Harlie was born with numerous medical complications. She was born with a series of congenital anomalies (that’s medical speak for things that turned out a little bit different for Harlie) which are part of a syndrome called Goldenhar Syndrome. The doctors are hopeful that all of Harlie’s complications can be repaired. (If you would like to check out a website with some good information you can go to: http://www.goldenharsyndrome.org) Both Christy and Tom encourage you to ask questions if there is something you do not understand or would like to learn more about.Because of Harlie’s syndrome, she has undergone numerous surgeries. She underwent open-heart surgery a few days after birth in order to begin to repair her congenital heart defect (this will require several surgeries during the next year or so). She also had a tracheostomy and a g-tube placed. Harlie needs the “trach” because she has an underdeveloped jaw, which makes her airway small, and unstable. The trach ensures that Harlie will be able to breathe. You will notice that the trach means she has a hole in her throat – below the vocal chords. This means that no air passes through the vocal chords, thus she cannot make sounds like a normal baby. So, when Harlie cries, the noise sounds a little funny. This is normal and you will get used to it. Harlie was given the G-tube, because the doctors expect that feeding will be somewhat of a challenge for Harlie because of her small airway and chin. The g-tube ensures that Harlie will get all the nutrition that she will need, since she may not be able to take a bottle for a while. Over time however, as Harlie gets bigger, she will eventually not need either the trach or the g-tube. Harlie’s most recent surgery was to remove 3 “skin tags” (which are little pieces of extra skin that sometimes form on people, for reasons which doctors don’t understand…these are actually quite common) from her face. These were removed quite successfully.Harlie will be having many doctors’ appointments for the next many years of her life. She will also have a few surgeries in the coming years to help her jaw form correctly, to repair her eye (she has a cleft in her eyelid, and the opening is larger than mine and yours – it also appears that she lacks the muscle tone around her left eye which leaves her unable to blink or shut her eye), and her left ear which is a little wrinkled and misplaced. She will have further tests done on her left ear to see if she has an ear drum (there is no opening to that ear to look inside and the doctors are unsure whether she will have hearing capability in that ear). The journey with Harlie will no doubt be a challenging and busy one, but it will also be filled with lots of joy and love. I want all of you to prepare yourselves to meet a beautiful little girl. Harlie certainly has a few unique features about her that make her look a little different. But she is adorable! She has perfect little hands (with looooong beautiful fingers) and feet, and her big brother’s same gorgeous blue eyes. She is long and skinny and has the same cute little knees that Murphy had, that make Christy laugh every time she looks at them. Harlie is a petite, precious, little bundle of joy! However, at the same time, Christy and Tom both know that Harlie does look different and that she does have significant complications that will be challenging and stressful. It will be most helpful to Christy and Tom if you don’t try to minimize the issues Harlie does have, because this makes parents feel invalidated as if they are “only focusing on the negative.” Christy and Tom are Harlie’s advocates and they have to address her complications realistically and assertively to ensure that the doctor’s do all they can to help Harlie have the best life possible. You will be most helpful to this family by being present with them, loving them and loving Harlie. I know from experience that parents are often very apprehensive to show their child to others when they know that people will look at their child and notice their “differences.” But I challenge you to notice the beautiful, perfect things about Harlie! There is a lot to notice. I know that Christy and Tom are grateful for all of your support. They are very lucky to have each and every one of you. Please take care of yourselves, and take care of this very special family too!Fondly, Kristen Caminiti
Ahh, it's Sunday and we have no where we have to be. What a great feeling - one that we haven't felt in a very long time.
Well, Harlie's first pediatrician's visit went well. She is definitely growing - check out her growth chart. We love her doctor. She has another family that she takes care of that has a daughter with some of the same problems that Harlie has and she had a trach, too. So, that's comforting. And a nurse there is also a home health nurse on the side and she takes care of a girl with a trach, too.
I wish she could be our nurse. Getting a complete stranger to come in and help take care of a special needs baby is pretty scary to me. So far things seem to be going smoothly. We've only had a few minor heart attacks. I suppose we'll get used to that, too! One thing we were supposed to do is contact the power company to let them know that she's on equipment 24/7. Tom's mom asked if we had done that yet and we said no. About 17 minutes later, the power went out. Don't you just love it? That pretty much sums up our last 6 months of life. Luckily, it came back on in a few minutes. Guess we'll be taking care of that first thing tomorrow morning.
Murphy seems to be adjusting well (all things considered) to having his little sister being home. It has got to be hard for him to understand that she gets fed through a feeding tube and she breathes through the trach. But it doesn't seem to bother him.
Well, unfortunately we had to put her back on oxygen this morning. Her numbers have been a little low the last few hours and this morning her alarm kept on going off. We tried a couple different things, but it didn't improve. So, I guess we'll see how it goes and go from there. Well, that's about it. Thanks for checking in and for thinking of us.
Hopefully, we'll get to see everyone soon. -Christy
We have been so consumed with Harlie's arrival home that I wasn't able to tell you all about Halloween.
Murphy, Christy, and I went Trick-or-Treating on Tuesday for the 1st time. Murphy hung in there long enough for Christy to get her fill of candy...if that is actually possible!
Personally, I was pleased to see all of my neighbors walking around with beers in their hands...I had a very similar idea.Murphy was dressed as a chicken. Yep, you read that corret, a big white chicken. And apparently he was quite the hit at both daycare and in the neighborhood. Amazing all the fuss a last minute $20 Target costume will cause (it was the last costume in his size). Photos in the album.
Anyway, it was a nice night. Our friends Marcy and Mike came over and gave out candy at the house so Christy and I could both go with Murphy. Mike cooked up a batch of New Orleans Etoufee that was of course awesome. Murphy and Christy had a small candy buffet.
Well, my family of four now officially lives in the same house! On Wednesday morning, all the supplies and equipment was delivered. It was crazy. It took us a long time to get everything organized. I think we were trained on all the equipment in a few hours. They had to go and get oxygen because the hospital called to say that she was back on oxygen. Luckily, they seemed to wean her off the oxygen by Thursday. Hopefully, we won't need to put her back on. On Wednesday night we roomed in at the NICU. It was crazy. Their monitors were going off every two seconds, keeping us from ever getting any sleep. Harlie was fine, their monitors are just hyper-sensitive. They gave her the hour car seat test and she passed with flying colors. Then on Thursday we started all the discharge stuff, CPR, paperwork, last minute questions, etc. We had the best nurse ever and she hooked us up and kept things streamlined so we could get on the road before traffic. We definitely did not want to have her in the car for 3+ hours. We had her baptized at 1pm. And then we said our goodbyes to everyone and were in the car at 2pm. It was weird to leave. On one hand it was so nice to know that I didn't have to drive back anytime soon. And it is not easy to be at a children's hospital everyday. The things you see are not good. It is very hard to see so many children not healthy - and to see their parents. I think we all have the same look to us. But then on the other hand, it was hard to leave the shelter of the hospital. Everyone there has seen far worse and Harlie's issues are nothing to them. She's just another baby that they need to help. Now, we enter the real world with people that have never seen a baby with a trache (just like we were) or one that looks like her. And that is pretty scary. Last night went well. She slept soundly between feedings. It takes 2 of us to take care of her right now. Hopefully, soon we get good enough to do some of her stuff solo so Tom can sleep since he has to go to work. I'll just have to learn to take naps during the day when she sleeps. That shouldn't be that hard - haha. Well, we have our first outing in a few hours - to the pediatrician's office. We'll see how that goes. It is safe to say that we will not be traveling light for quite a while. I am definitely not going anywhere alone with Harlie for a while! Well, we have to get going. Thanks for checking in and thanks for thinking of us. I'll have more medical info for you soon (hopefully by Monday morning). Talk to you soon,Christy
Murphy is 11 and is in sixth grade. He is constantly making us laugh with his crazy sense of humor and wonderful imagination. He is a great big brother and adjusted with no problems to this role. He has been an easy kid to raise from the get-go (despite the fact he entered this world 5 weeks ahead of schedule).
Harlie is 9 and is in second grade. She has Goldenhar Syndrome, VACTERL Association and a lung defect that required the removal of 2 lobes on the right side. After over 45 surgeries (4 of them open heart), she is remarkably age appropriate. She is the sweetest, funniest little girl I've ever met. You can't help but fall in love with her.
Cooper is 7 and is in first grade. He is a very talkative, high energy and affectionate little guy. He is all boy and he is a very funny kid. We are so lucky to have him!
Rooney was born on February 5, 2012. He has been a wonderful addition to our family. He is such a great little dog and I just can't imagine life without him now! I love him so much!!!