Another busy week

Well, this week will be another busy one for us with 4 appointments. At our last pediatrician appointment they cultured her secretions to make sure she was germ-free. As it turns out, she's got a bug growing again. As her doctor said, we are walking a thin line with her. We don't want to over-medicate, but we don't want to leave her vulnerable, either. An average sickness could easily land her in the hospital, and we don't want that. So, we decided to give her a day or two to fight it on her own and see how she does.

On Friday, she has her CT scans in Norfolk. We will go down on Thursday after her weekly pediatrician appointment and will come back Friday afternoon. We will go back to Norfolk again on the 13th to talk to Dr. Magee about the scans and our plan of action. I am thinking that she will have to be fitted for a helmet to help her skull shape. Of course, we'll have to see a different doctor for that. But we'll see what he says.

I spoke with her Richmond cardiologist today about her next heart procedure (heart catheterization). They will put a line in one of her veins in her leg and follow it up to her heart. They will inject dye and take pictures while it is being pumped through her heart. This will tell them what they should do next. We don't know if she will be admitted and have to stay overnight or not. It depends on how she does throughout the procedure. She will be asleep, of course. She will have that done here in Richmond. They will send all the data to her DC cardiologist to go over everything with the surgeon. My friend, Karen, told me that the surgeon is going to be in Japan for a month Feb-Mar. (Karen's daughter has a heart defect, too, was born a few weeks after Harlie and they share heart docs). So, hopefully, we won't need him while he's away. Well, that's about it for now. I hope you are all doing well.

Take care,
Christy

Dad's Entry

Well I started strong back on day 1 with my journal entires, but my other duties as Dad has taken away that extra time. (as if Christy actually has a second of spare time herself...)

Anyway, I had a moment and wanted to say that my little "Lean Cuisine" is finally over 9 lbs. For those who aren’t that familiar with Dad's nicknames, for some reason I have been calling Murphy "Chunky Soup" for the past 2 years. That doesn’t really fit our little one, so Christy suggested "Lean Cuisine" and it stuck. It’s rather fitting if you have seen her.

Last night was pretty rough for the nurse as Harlie was having a hard time keeping those O2 numbers up. Her pulse shot up over 200 for a bit. She received 5 shots as part of her Dr. visit yesterday so we think that’s given her a slight fever and the bad numbers. A dose of Tylenol helped a little and I believe she has some better numbers this afternoon. That being said, it is quite possible that we may have to have her pulmonary band adjusted to allow more blood flow to here lungs. We were aware of this from day one, but I can say I'm not looking forward to opening up the chest again. Let’s hope that holds out until the actual heart surgery. That’s it for now, back to the kitchen designer job as I prefer it over the Dr job.

Tom

Feeding update

So, I have attempted to feed Harlie a bottle. It's a no-go so far. I try at each feeding. I know it is silly, but I REALLY hoped that she would just start sucking and swallowing and everything would be just dandy. Like I said, silly. But I only thought that because she took right to it during the barium swallow study. But I guess it is best that she did it during the study so now we know that she can do it. So, I'll just keep trying.

So, on Tuesday we had her monthly appointment with the pulmonologist. Right now I think that a monthly visit is just not necessary. First a nutritionist comes in and asks me a million questions. So, I have to go over everything that was discussed at the Feeding Clinic last week. Then she gives me her opinion of the whole thing. Then a resident comes in and asks me a bunch of questions - mostly repeats of what was covered with the nutritionist. Lastly, (thank goodness) the doctor comes in and - guess what - we go over the same information that I had to go over with both the nutritionist and the resident! Talk about frustrating!!

Then, I had to call the Feeding Clinic and discuss what the nutritionist talked about. UGH! Too many professionals, too little time! We tried to go from 5 feedings a day to 3. But, I think that was fluid overload for Harlie. Her secretions went up - our night nurse had to suction her every 15 minutes during the night. Her respirations (the number of breaths you take in a minute) were twice than normal. And she has slept more than she has in a while. She practically slept for 3 days straight! Her heart has to work so hard to process all that fluid. So, we gave her an extra dose of her heart medication and cut back on the amount per feeding, 4 times a day instead of 3. She seems like she is getting back to normal again.

Well, we go to the pediatrician tomorrow. We are hoping she'll be over 9 pounds. She'll be 4 months old tomorrow. Talk to you later.

Hope all is well.
-Christy

Cardiology appt.

Well, we had our monthly appointment with the cardiologist on Friday. Harlie will have some more extensive tests done in the next month or so to help the doctors know which route to take to repair her heart. One ventricle is considerably smaller than the other, so that will complicate matters a bit. We have been hoping for the “double switch” surgery, which is the two ventricle repair. But it is too hard to tell at this point what is going to happen. I asked him if he had a gut feeling. He said that he hasn’t seen enough of her kind of defects to be able to have one. Which lead me to ask how often transposition of the greater arteries happens (plus she actually has several defects – not just TGA). He said his guess was 1 in 65,000-70,000. But he said that it is difficult to really know because so many parents chose to terminate the pregnancy when this defect is found. Hearing that made me remember when we were told about her heart defects. They asked us if we wanted to continue the pregnancy. With her chest mass and heart defects, we thought the decision wouldn’t have to be ours to make.

The reason why I’m writing this is because I think it is important that those around us understand that we are about to face Harlie’s biggest challenge and there are no guarantees. So many times we hear that all of Harlie’s abnormalities are “fixable”. I guess because medical technology has come so far in the world of plastic surgery, that is easy to think. But her biggest abnormality is one that you can’t see – and it is extremely serious as far as heart defects go. I think the best thing that came out of the appointment is that it made me truly realize how incredible it is that she is here – and doing as well as she is. Her care is exhausting and never ending. But each moment is a moment that we wouldn’t have, had we made a different decision. And she is so charming! When she smiles at you, it just melts your heart!

Well, it is late so I have to go. Thanks for checking in and for all the nice things you write in our guestbook. It really does help.

Take care,
Christy

Feeding update

So, nothing new today. Met with the Feeding Clinic on Tuesday. They gave me a new feeding schedule. We are trying to increase the volume per feeding and will start to space them out a bit. She has been eating every 3 hours, and then continuously throughout the night. The goal is to get from 5 feedings per day to 3 and still keep the continuous night feed. She weighed 8 pounds, 13 ounces. That's a gain of 3 ounces in 5 days. So, it looks like she'll hit 9 pounds before she turns 4 months old.

I asked about feeding her by mouth - but they told me that the occupational therapist will oversee that. She is the one that came over last week to do the face/mouth exercises. She is supposed to call me today to set up a weekly appointment. So, I have to have a little more patience. Although that is hard sometimes. Still no day nurse. The one that was supposed to come on Tuesday never showed up. I have a few agencies looking now. Well, that's it for now. Talk to you soon,
-Christy

Barium swallow study

So, Harlie had the barium swallow and upper GI today. My sister-in-law, Nancy, went with me since Tom had to work. The tests went GREAT! I couldn’t believe my ears when the doctor said she didn’t have a TE fistula and everything looked… get this… NORMAL!!!! I told them that was the first time I had heard the term “normal” about Harlie.

And she did so great during the study, too. They put her on this stretcher type thing and then wrapped tape around the stretcher and her from her chest to her feet. They took an x-ray, and then they had to restrain her hands up over her head. So then they wrapped tape around her head and hands. So all you could see was her face and belly. She looked like she was in a cocoon.

Can you believe that she hardly cried at all? I just couldn’t believe how tolerant she was. She was so cooperative! While she was all taped up, they put a small bottle in her mouth and she started sucking and swallowing!! We watched it on a TV monitor. You could see her trach, pacemaker wires, the band on her pulmonary artery and of course, her swallowing. Then they put a tube down her nose and fed her more of the solution. They rolled the stretcher around so she was on her side – like a chicken rotisserie. After just a few minutes, the doctor said all looks normal.

YAY!!! Tomorrow we go to the feeding clinic to go over everything. We are crossing our fingers that we will get to start to feed her by bottle very soon. I know it won’t be bottle only, but I would really be happy with just a few minutes at each feeding. Well, it is getting late, so I have to go. I hope you are all well.

Thanks for checking in!
-Christy

Quick one on Sunday night

Hi everyone,

Just a quick one tonight... just in case you were wondering about the day nurse, the meeting didn't happen. She called and wanted to reschedule it to Tuesday. I've called another agency to see if they can fill the position. So, we'll see what happens. If I could find another nurse like my night nurse I would be so happy.

We have the barium swallow and upper GI in the morning. I am really hoping that all will go well. We meet with the Feeding Clinic on Tuesday to go over the results. We are crossing our fingers that they will tell us that we can start to try to feed her by mouth soon.

Okay, talk to you later.
-Christy

15 weeks

Harlie weighed in at 8 pounds, 10 ounces. That's a 4 ounce gain in 7 days. Not exactly what we were hoping for, but maybe this week will be better. The goal is still 1 ounce per day.

We have an appointment with the feeding clinic next week, so we'll see what they have to say. Next week is pretty busy. We have 5 appointments:

1. barium swallow and upper GI
2. feeding clinic
3. physical therapy
4. cardiology
5. pediatrician

I am supposed to meet a potential day nurse this afternoon. We'll see how that goes. I am hoping that I like her - it has been 3 weeks since I have had a day nurse.

Well, I have to run. Hope you are all well.
-Christy

Occupational Therapy

So, the Occupational Therapist came over today. She taught me a bunch of exercises to do to Harlie. Basically, we need to keep her muscles strong around her mouth. Since she doesn’t use her mouth for eating, the muscles around her mouth can tighten and make it harder for her to suck or eat from a spoon, etc. later. Since her jaw is so small, the skin tends to pull down, so hopefully, they will help with that, too. Some of the exercises are in her mouth, which, hopefully will help prevent oral aversion.

The funny thing is that she showed me on Harlie, then on me, then I had to repeat the exercises on her! It was hysterical. I met her once in December. And here we were sitting next to each other sticking our fingers in each other’s mouths!!! And it sounds silly, but one exercise was particularly difficult for me to learn. We had to stop several times because we were laughing so hard. Harlie was looking at us like we were crazy.

When I think of all the things I’ve had to learn and do in the past 3 months it amazes me. Who knew that I would be sitting in my living room with my fingers in a stranger’s mouth?! I told her I didn’t know which was more violating – her fingers in my mouth or mine in hers!! Either way, it was WEIRD!

Tomorrow we have our weekly appointment with the pediatrician. Hopefully, she’s gained some good weight. Well, I need to run. Just wanted to share my funny story. It is nice to have some funny things to share on occasion.

Hope all is well,
Christy

Plastic Surgery Consult

Hi everybody,

Well, we are back at home. We had our appointment with Dr. Magee this morning. It was weird to be back at CHKD again. The last time I was there I was working at Operation Smile and was there for a world care patient. And now I'm back for my own little patient.

I think it went well overall. After looking her over, he thinks that she has a lateral facial cleft as well. We noticed an indentation that she has from her right ear to the corner of her mouth but didn’t know what to make of it. I guess now we know. She also has some small spots of indentations around her left ear. I guess it makes me feel lucky as far as facial clefts go. It could be so much worse.

He ordered CT scans of her head and neck. He is looking for craniosynostosis (premature fusion of the skull sutures), facial bone structure, and neck (vertebral) issues. Hopefully we’ll get that scheduled for the near future.

He explained a procedure that he believes would be best to fix her jaw. Most of what I have read is about jaw distraction which involves cutting the jaw and installing hardware and screws that you adjust as time goes by to extend the jaw. But the procedure he described is different.

He goes in from under her skin to minimize facial scarring and nerve damage. There is no way I could properly repeat what he said but basically, they cut her jaw and somehow use some bone from her skull to extend it forward. Screws and wires under her skin set the jaw in place in a forward position (like an under bite) and her jaw stays that way for 8 weeks until it heals. So, overall it is a quick repair. The best thing about this is that he believes it is best not to wait too long to do this procedure. That was music to our ears!

He said the negative side effects of the underdeveloped jaw are far worse: the trach, g-tube, no speech or sound, potential for oral aversions, etc. We couldn't agree more! So, he said that as soon as she is strong enough and we get the all clear from her cardiologist then we can do it.

So, as far as cardiology goes, I spoke with her DC cardiologist last week. When she is 5 months old they will re-assess her heart situation to determine which procedure to do. Because she has a large VSD (hole in between the ventricles of her heart) they have two options. They can do a single ventricular repair, or a double ventricular repair. We are hoping for the double ventricular repair because it is one big operation and then it's done. The single ventricular repair takes 3 separate surgeries over a period of time. Well, that’s everything in brief. Well, it is getting late.

Talk to you later,
-Christy

Road Trip

So, we took our first road trip since we've been home. On Saturday, Harlie and I came to Suffolk to stay with a friend of mine (Melissa). If ever you think that you don't travel light - you should have seen our car. I had one small bag. Harlie had the rest of the entire Honda Pilot. It is insane.

But one really good thing... the way Melissa's house is, the only real option was to put the oxygen concentrator and air pump in the garage, and take the tubing into the den. The good thing is that it finally dawned on me that we can do that at home, too!!! Putting that equipment in the garage will make things so much better at home. That equipment runs constantly and it is very loud and puts out a lot of heat. I don't know how we went this long without realizing this great solution. It will be so nice to have some quiet in our house again. It is the little things that we have learned to appreciate.

It has been really nice to get out of our house the past few days. Harlie and I were getting cabin fever. Melissa is a nurse so I had some help with Harlie, too. She watched Harlie for me today so I could get out for a bit, which was great. Tom and Murphy came down tonight (Monday). Murphy, Abby and Isabella (Melissa's girls) are having a slumber party and they are loving it.

So, the reason why we came down is because we have an appointment in the morning with Dr. Magee, the craniofacial plastic surgeon at Children's Hospital of the King's Daughters. I am really hoping that he'll have some positive things to tell us.

So, I think Harlie is feeling much better. I think giving all her meds at once was making her spit up. So, Melissa helped me with a meds schedule so all her meds are given at different times. We've been doing that for 2 days now, and already I have noticed a big difference. I think it is just easier on her tummy. Well, I'll let you know how our appointment goes.

Talk to you soon. Hope you are all well.
-Christy

Getting better

So, after another shot of antibiotics, I think Harlie is starting to feel better. Yesterday, she weighed in at 8 pounds 6 ounces. We are a little disappointed in that since she only gained 5 ounces in 9 days. But, considering that she's been fighting this bug, I guess that's to be expected. Generally speaking, when you don't feel good, you don't tend to eat that much. So, we're not worried, we just want her to get well again so she can get on with growing.

Unfortunately, since she's been sick, we had to postpone her barium swallow and upper GI. That's pretty frustrating because the next available date isn't until February 13!!! That's another 6 weeks before we can even think about being able to feed her by mouth. I have to remember that the reason why she has a G-tube is because they expected her to need it for a long time. Otherwise, she would have a tube through her nose. I guess I was just holding out hope that they were wrong. But I am starting to learn why everything takes so long and that things just aren't as easy as you woud think.

When something is good for one part of her, it is bad for another. For example, the shots that she got over the past few days, well normally they mix the solution with a pain reducer (Lidacain) because it is a painful medication - but because of her cardiac issues, she can't have Lidacain - so she had to get both shots straight.

Also, she needed breathing treatments, but the breathing treatments increase your heart rate - so she can't have that, either. And the scary part of that is that I have to remember stuff like that because I can't let any of the doctors forget about one of her problems.

Well, I am expecting a nurse to come any minute now to interview. Hopefully, I'll like her. Okay, talk to you later.

Hope all is well,
Christy

St. Mary's visit

So, today was a little crazy. On Tuesday, Harlie was getting worse again. I had to suction her every minute it seemed. The pediatrician called to say that the culture results came back from last week. There are 2 germs growing that could lead to pneumonia. Luckily, she put her on antibiotics last week just to be on the safe side, so hopefully that helped. But one of the germs is only moderately sensitive to the antibiotics, so she said we might need to get something more hospital grade. Then the night nurse came and during the night Harlie got worse. I love that our night nurse works at the pediatrician's office. By the time we got up, she had already spoken to Dr. Smith and they already had a plan of action. She wanted me to take Harlie to St. Mary's ER for chest x-rays and an RSV test. I have to say that it was the best visit I've ever had to an ER. Dr. Smith called ahead, and when I got there, they were ready for us. So, no waiting and the nurses were so eager to help. They were all over Harlie. None of them had seen a Goldenhar patient before, so some were just curious, which was fine by me. The more people that learn about it, the better, I think. The best thing about our visit today, is how different it felt for me. I knew so much more about what was going on. It made me realize just how far we’ve come in the past 2 months. One nurse was in training and the senior nurse told her to always listen to the moms of special needs children – they know their care better than anyone. When we were preparing to leave the NICU, the nurses told us that this day would come. They said that one day I would be telling the nurses what Harlie needs and how it should be done. It seemed so hard to believe at the time. Anyway, no RSV, and the x-rays are questionable. I think the remains of the chest mass are complicating matters a bit. They gave her a shot of Rocephin (antibiotic) and when I take her to the pediatrician tomorrow, she’ll get another one. Hopefully that will take care of it for good. Well, gotta go. Talk to you later,Christy

Happy New Year

Wow. I can't tell you how glad Tom and I are to be leaving 2006 behind. It has been 8 long months since we learned our baby would have problems. We are truly ready for good news, good health and good developments. The new year starts out busy for us. This week we have: a barium swallow study, upper GI, occupational therapy, and an appointment with the pediatrican. The past few days have been pretty good I think. She is still spitting up, but I think it is improving. Her secretions seem to be going back down to normal - so that has helped her spit up less. Even though it is perfectly normal for a baby to spit up - it is a bit different for her. She can't wear a bib, so it is a total mess and her trach ties have to be changed when they get wet. And of course, the last thing she needs is for it to go down into her lungs through the trach. So, anything we can do to minimize it - the better. We hope to have another day nurse starting this week. She came over to meet us, but she is getting over a cold, so she has to wait till she's well before starting. Tom's parents came down to visit for the weekend. And our night nurse came over early so Tom and I could go out with some friends for New Year's. The nurse can't watch Murphy, too, so we have to have 2 sitters to go out. Since it has been more than a week since we've had a day nurse, we really needed a night out. Even though Harlie is a happy baby, her care is intense and constant. Well, it is getting late. I hope you all had a good long weekend and a safe and happy new year's. Talk to you soon,Christy