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