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.
Well, we had to go to the pediatrician today. Harlie hasn’t been feeling well since Saturday. She had way more secretions than ever before so we were constantly suctioning her (which makes for a very long day – and night!) Luckily our night nurse is great. She is the one that works at my pediatrician’s office. She offered to come over Christmas night to stay with Harlie so we could get some sleep. After spending all night watching her, she suggested we take her in just to be sure. They cultured her secretions, so we’ll see what comes back. I’m hoping for nothing since I think she’s improved a lot since Saturday. Well, we had to let our day nurse go on Friday. That just wasn’t working out. So, for now we only have our night nurse. Hopefully the agency will send someone soon. Oh, Harlie weighed in at 8 pounds 1 ounce. We are really happy with that because that is 5 ounces in 5 days! And after struggling a little bit this weekend, we increased her intake again. I think because she didn’t feel good this weekend, it took her a couple of days to get adjusted to the increased amount. But it looks like she’s adjusted now, so that’s good. It is so great to see the weight on her. I have been so focused on her medical care that it was hard for me to see the “baby” in her. But I think I’m getting better at seeing her in a different light now, which I am loving. We added some new pictures so you can see the changes in her, too. I hope you like them. Well, I hope you all had a great Christmas. We had my family over and it was really nice to have all that craziness in our home – in a good way, I mean! It made me realize that although Harlie hasn’t been the luckiest baby in town, she sure was lucky to be born into this family of ours. Everyone loves her just the way she is. Okay, talk to you soon! -Christy
We had our weekly visit to the pediatrician today. Harlie gained 5 ounces in 7 days. She now weighs 7 pounds, 12 ounces. She will be 3 months old on Christmas. Overall, her health seems good. You can definitely see her weight gain now, which is really nice for us. She is also staying awake for longer periods of time, which is also really nice.
Well, it is late so I have to cut this one short. I hope you all have a Merry Christmas. -Christy
On Friday we had an appointment with the cardiologist. I think it went well. He is very nice and he spent some extra time teaching me “cardiology 101” to help me understand Harlie’s heart defects. Basically, they didn’t want to do her surgery before she was 2 months old. They wanted her lungs to be fully developed. And they want her to be bigger and stronger. But, they also can’t wait too long. Since her heart is having to work much harder than it should, the longer it goes like that, the more “muscle bound” it becomes, and that will make the surgery and recovery more difficult. I will be really glad when her surgery is behind us. March is really not that far away now. Hopefully we will be able to stop using the pulse ox monitor afterwards. It will be nice to lose that cord. He also told me that he will be surprised if she makes it through the winter without having to go back into the hospital. He told me that even though we are doing everything we can to keep her healthy, with the trach and everything else she has going on, getting sick and not being able to fight it as well is normal. We were glad he told us that. Now we won't freak out - as much. But we're still going to try to keep her home for good, of course.As I was leaving the doctor’s office, I passed a mom of a girl that was in a wheelchair. She saw my notebook. (For those of you that don’t know, we had to put a notebook together with dividers for each of Harlie’s problems. It keeps us very organized. It is a 4” binder now.) Anyway, she saw it and said that she has one, too. Then she touched my arm and told me that it will get better. Here was a complete stranger of a girl that has far more severe and permanent disabilities, and she was comforting me. I thought that was the nicest thing ever. Well, I have to go. I hope you are all well and I’ll talk to you soon.-Christy
So, we went to see the pediatrician today. She weighed in at 7 pounds, 7 ounces - just one ounce less than our goal. We are very happy with that. Tomorrow we go to the cardiologist. Hopefully, all will go well with that. I am expecting it to be pretty routine.
I just want to say thank you to all of you that have provided meals to us. It has been so great to not have to worry about cooking! If I had to cook dinner every night, we would have starved by now. So, you've helped us a lot and we really appreciate it.
Today we had the Early Intervention Program appointment. A physical therapist, occupational therapist and coordinator came over to evaluate Harlie. After a thorough evaluation, it seems that she is in the 25th percentile as far as her development goes. I was actually pleased with that. Considering she was sedated for the first 3-4 weeks of her life and didn’t get to be held on a regular basis until she was 6 weeks old – I think that’s pretty good.
They put her on her belly for the first time. I was too scared to do it on my own. But, as it turns out, she did really well. They showed me some tricks to make it easier on her with the trach. They are going to come once a week and teach me new exercises to do with her to help her along.
Tomorrow is another pediatrician appointment. We are really hoping that the continuous feeds and Zantac have helped her to gain some substantial weight. They want her to gain an ounce a day. So we’re shooting for 7.8. We’ll see….Well, time to go.
Thanks for checking in. I hope all’s well. -Christy
Today we went to see Harlie’s eye doctor and eye surgeon. They said that her eye is looking good. It has definitely improved over the last month. She is now able to close it when she cries and yawns. Sometimes it is even closed when she’s sleeping (most of the time it is open when she is really relaxed). The doctor’s concern is exposure and her inability to protect her eye all the time. But so far, so good – no scratches or anything. So, we’ll just continue to put ointment in it and let her grow and see what she can do in time.
The eye surgeon said he will have to remove her dermoid (a growth on her eyeball). He thinks that the dermoid is preventing her bottom lid from coming up. He will close the opening to try to make it even with her other eye, but he will not repair the cleft in her eye lid. He said that could do more harm than good at this point. The best part is that they don’t need to see her again until February. Hopefully, her doctor appointments will start to spread out a little more (this week she has 4 appointments).
We’ve been doing the slow continuous feedings through the night for almost a week now. Overall I think it has been going okay. As much as I hate getting further away from “normal”, we are really appreciating being able to get more sleep. Now I only have to get up once to refill the bag, and to pump (and then suction her as needed throughout the night). Hopefully it is working and putting more weight on her. We’ll find out on Thursday. On Wednesday, the occupational and physical therapists are coming out to see her. I’m anxious to see what they will say and do. Well, that’s it for tonight. Thank you to all the visitors we had last week. It was really great to see you all! -Christy
We have had so many requests for an ongoing method to help Tom and Christy in their care of Harlie that we have set up a legal trust, “The Harlie Fund.” Contributions can be made to the Fund to help with the costs incurred in taking care of Harlie’s current and future needs.
If you wish to donate, checks should be made payable to “The Harlie Fund” and mailed to:
The Harlie Fund
c/o William L. Jeffries, Jr.
Kane, Jeffries, Cooper & Carollo, LLP
1700 Bayberry Court, Suite 103
Henrico, Virginia 23226
We are so appreciative of all the support shown to us all. Tom and Christy have gained strength from your thoughts and prayers. We thank you from the bottoms of our hearts.
Elaine Staples (Christy’s mom)
Sandy Jacobson (Christy’s sister)
So Harlie now weighs 7 pounds. Although it is good that she is gaining weight - the rate is slower than what the doctors would like. We have tried to increase the volume, but it seems that her stomach can’t accommodate that and she spits it back up. So the new plan is to continue the day feedings as usual (2 oz. every 3 hours) and at night, put her on a slow continuous feed over 10 hours (slowly increasing the volume given at night over the next few weeks). The goal is to get her to take in more calories (and keep them) and gain an ounce a day (she’s been gaining about a half an ounce a day). They also put her on reflux medicine to see if that helps. We are really hoping that this new plan works. It is hard having a 10 week old baby that still doesn’t weigh as much as the average newborn (and she wasn’t a preemie). I feel like she’s going to be a newborn forever! I think the magic weight for a baby to be able to sleep through the night without needing to be fed is 12 pounds. At the rate we are currently going, she wouldn’t be 12 pounds until May – and she would be 8 months old! They ordered a barium swallow and upper GI. Unfortunately, the soonest we can get in for that is sometime in January. It is definitely going to be a long process to get her to eat by mouth. One problem will be that eating by mouth will make her burn more calories – so we’ll be fighting that again. What we’ll probably do is feed her a little by mouth and then give the rest through the tube. I really wanted to get rid of the tube – but considering all the surgeries she has ahead – the tube will be essential to her gaining weight. And considering that they want her to be as strong as possible for her heart surgery - eating by mouth is not a priority. Well, it’s time to go. I hope you are all well. Talk to you later,Christy
Hi Everybody,Sorry I haven't updated the site recently. The past week was pretty tiring. Out of the 20 weekdays she has been home, she has had 9 doctor's appointments. Tomorrow will be especially busy with 2 appointments. At our last pediatrician's appointment, our doctor said that Harlie had caught a virus. She's been on antibotics and she has eye drops for the virus in her left eye. I guess it was just a matter of time for that one. Although we have been very pleased to notice that she's able to close her left eye when she's crying and sometimes even when she's sleeping. That is a big improvement. So maybe her muscle tone was just a bit underdeveloped. Tomorrow we go to the Feeding Clinic at the Children's hospital here in Richmond. I think they are going to run some tests to make sure that it is safe to start to try to feed her by mouth. I think they will have to do a barium swallow. Anyway, I know that this process will be a long one - but I can't tell you how wonderful it would be to feed her by mouth. On a fun note, Murphy's school is doing a Christmas "show" tomorrow night. He'll be singing with his class. That should be funny. Our nurse is off tomorrow, but she is rearranging her schedule so Tom and I both can go. I think we might have gotten lucky with our nurse. She is very accommodating and seems to care about Harlie and her well being. Well, it is late. I will update the journal tomorrow night to let you know how the appointments went. I hope you are all well. -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!!!