Blood Drive

Well, after going back to the pediatrician’s office for Harlie’s RSV shot on Friday – her weight was 10 pounds, 8 ounces. Again, I don’t think that’s very accurate, but I guess we’ll find out for sure this week. She’s back on her Lasix 2x a day, so we’ll see what happens.

I came down with a terrible cold this weekend and Murphy is sick, too. I took him to the doctor today (it felt very weird to be there without Harlie!). One of Murphy’s ear tubes came out on Sunday and he has an ear infection today. Nice. So, I am trying to keep Murphy and myself away from Harlie (which is impossible to do!). I am just keeping my fingers crossed that Harlie doesn’t get it. Talk about really bad timing!

So, now that surgery is just a week away (yikes!)…I just wanted to throw this out there. At first, I was reluctant to do this. But, I talked to my friend Karen, whose daughter (Jameson) is having her 2nd heart surgery on Thursday. I’ve mentioned Karen before, we met when we were pregnant at our OB’s office in DC.

Anyway, Karen went up there today to donate for Jameson, who is also O+. They told her that there is a shortage of O+ blood! And to make it worse, for open heart surgeries they want the freshest blood possible, so they would only want blood donated on Thursday and Friday.

Unfortunately, since I came down with this killer cold, according to the list below, that makes me ineligible to donate. Clearly, I am VERY disappointed. (I am really hoping our luck starts to turn around.)

Anyway, I know that it is very difficult to do this with work schedules and the drive, but if you can, we would be forever grateful. So, if you would like to donate blood to Harlie, you can. Here’s the deal:

• Harlie is O+.
• Donations have to be done at Children’s National Medical Center in DC.Blood Donor CenterCNMC, 2nd FloorThursday hours – 7am – 4pmFriday hours – 7am to 2pm(202) 884-KIDS (5437) – please call to make an appointment (I found that 11am is very doable without much pain - leave here at 8:30am, be there by 11am)

• You have to donate 3-5 days before the surgery date. Since her surgery is scheduled for Tuesday, the only days available are Thursday (March 1st) and Friday (2nd). Here is a brief list that would count you out: (please call if you have any questions so you don’t drive all the way up there for nothing)Allergies- at least 5 days after an allergy shot Blood Transfusion- at least 12 months after Cancer- If you have had cancer, you can’t donateCold or flu, sore throat, diarrhea or any other viral symptoms within 5 days Dental work - 72 hours after any dental work/cleaning No diabetes No Drug useHeart trouble- only if you are not on any heart medication Hepatitis High blood pressure Incarceration within past 12 months (I am pretty sure all my friends and family are clear on this one) Medications Accutane, Proscar, Propecia defer 1 month Avodart defer 6 months Soriatane-defer 3 months Tegisone - permanent deferral Piercings - by non sterile environment STDs (have or had)Sickle cell Major Surgery within the past 6 months that required overnight stay Tattooing in the past 12 months Weight must be at least 110 lbs

If you are still reading this, and you would like to help, please let me know. The best way to reach me is to e-mail me at christy_holton@hotmail.com (I check it everyday).Thank you for all your support so far. Well, more details later.

Hope you are all well.
-Christy

Cranial Mold

Hi. Today was a busy day. We had our weekly appointment with the pediatrician. Unfortunately, during her hospital stay, they took a blood culture and it came back with a possible germ. They are thinking that if she really had that germ, she would be way sick, but she’s not. So, they think the test isn’t accurate. So, they had to take more blood today and they usually have to stick her a couple of times before getting any. I tell you, this girl is going to be immune to pain pretty soon.

They weighed her as usual, but the weight can’t be right. Last week she weighed 10 pounds, 1 ounce. Today she weighed 10 pounds, 10 ounces. Although I wish that were true, there is no way she gained that much weight when she went 2 days without her normal feedings. She has been on Lasix since she was born and they just told me to stop giving it to her. Lasix helps your body get rid of excess fluid (to help prevent congestive heart failure). Today she was so junky (had a lot of secretions) and her lungs sounded really wet. So, we gave her a dose of Lasix and we’ll see how she does. Already she sounds better.

Unfortunately she needs her monthly RSV shot, so we have to go back tomorrow morning for that. Dr. Smith said considering how she sounded, it wasn’t a good idea to give her that shot today. So, I guess we’ll weigh her again in the morning and see what that weight is.

This afternoon the physical therapists came over to get a mold of her head for a cranial remodeling band (aka helmet). They were so nice to make a house call for us so we didn’t have to go out again. I can’t tell you how great it feels to know that people will go out of their way to help Harlie stay comfortable. Well, we laughed so hard! Harlie was hysterical. She loved getting the mold made. She didn’t cry until she took the mold OFF! She said that’s a good sign that she will tolerate the band. I picked out a patterned band – we will either get pink bunnies, or a Dalmatian print, whatever is available (there wasn't much to choose from). I figure we might as well have fun with it. I took lots of pictures and posted them so check them out when you get a chance. Well, that’s it for tonight.

Talk to you later!
-Christy

We're home!

Well, we are home!

Harlie was discharged at 7:30 last night. Her cardiologist wanted her out of there before she got RSV or something. They took several chest x-rays and found that she had atelectasis (the collapse of part or all of a lung by blockage of the air passages) in her right lung.Once they weaned her off the vent and put her on CPAP (Continuous Positive Airway Pressure) she really started to improve. I just don’t think she liked the vent forcing her to breathe.

After a few hours of continuously turning down the settings on the CPAP, they went to her normal trach collar on high oxygen. Then they turned the oxygen down to a level that we could give her here at home. We had our equipment company switch out our 5.5 liter concentrator for a 10 liter one. By the time we had her home she looked much more like herself. How could anyone be happy with all that stuff – IVs, boards, blood pressure cuffs, etc.? The poor thing was like a pin cushion with all the blood work they had to get. She’s got little scabs on all her extremities. Luckily she had a really good nurse yesterday that was really good at finding tiny little veins.

Well, as far as how the heart catheterization actually went. Here’s what we know.

Findings from the catheterization:

• The band on her pulmonary artery is TIGHT. This means that it is very hard for her blood to get to her lungs to get oxygen (creates a bottleneck). This is why we monitor her oxygen saturation levels. We knew this would happen sometime. When they operate, they will do away with this artery and re-plumb her heart.

• They found another defect. A bridge between two arteries, or something isn’t there. This is just more information to give to the surgeon so he is prepared and gets no surprises during surgery. I think instead of having one shunt, she will need two, but don’t quote me on that.

• Her right ventricle is small. This probably means they won’t be able to do the double switch surgery. But, the surgeon will ultimately make that decision.

• The worst news we got is that no matter which surgery is done, Harlie will eventually need a heart transplant. He was thinking in 25-30 years – just a guess of course. Sounds like far down the road until you think that she would be younger than I am right now.

The surgery date is March 6, unless something happens in the meantime. I feel a lot better now knowing that Dr. Jonas will actually be there next week, so should things change with her status, we have options. It is hard to believe that we are here again. When she was born, March seemed so far away. We are not looking forward to this experience. I can’t begin to tell you how hard it is to see your sweet little baby like that. And this surgery will be way worse than her first one. But so far, she has proved to be a strong little girl, so hopefully she’ll kick butt. Well that's it for now. Thanks for all your thoughts and prayers. Keep 'em coming!

Take care,
Christy

Still in the hospital...

Unfortunately we are still in the hospital. Yesterday they couldn’t get her off the vent (which we hate) and her sats were WAY low (the lowest we saw was 29%). Her cardiologist said that her heart had a delicate balance and we threw it off with the cath.

Anyway, they have tried a whole bunch of things, and the doctors have really been attentive to her. The only way we can take her home is if they can get her off the vent and get her sats up. They said they would be happy with the 70’s. The band they put on her pulmonary artery when she was 4 days old is getting too tight. This limits the blood flow to her lungs, so no matter how much oxygen we give her, it won’t help.

This morning they had to give her a blood transfusion. Her hemoglobin was low. They are hoping this will help her sats as well. Worst case scenario is that if they can’t get her off the vent and raise her sats, then they will transfer her to DC. (hopefully that won’t happen)

As of right now, they are planning to do her heart surgery during the first week of March. Unfortunately, her heart surgeon is out of the country for the rest of February. So, if the band needs to be adjusted and can’t wait till March, then a different surgeon will have to do that and the heart repair will wait until Dr. Jonas gets back.

Last night Harlie kept on pulling the vent off. The good thing is that the nurses react very quickly to that alarm. They tried putting her arms in the board things – but she just wiggled her way out of them. So, unfortunately they had to restrain her arms. But, they did it very gently I think.

She has been fighting a fever, too. I’ll explain the findings of the heart cath tomorrow. Let’s just say I have a better understanding of what is going on now. Well, we’ll keep you posted. Please keep Harlie in your prayers.

Thank you.

-Christy

UPDATE: 9:30am

Okay, I misunderstood. They will not adjust the PA band. They would have to do surgery to repair her heart. My pediatrician is looking into other options (Children's Hospital of Philadelphia) just in case we are looking at the worst case scenario. We are keeping our fingers crossed, but I've been told that they won't be surprised if we can't get her off the vent. I will try to update this entry, so check back later for more updates. Thanks.

Heart Cath

Hi. Well, tomorrow (Monday) is Harlie’s heart catheterization procedure. It is downtown at MCV. We don’t know if she will have to stay overnight. They might keep her for observation. But I am hoping that since we have a night nurse, they might let us bring her home. We have no idea when we will find out the results. This procedure should determine what operation(s) she will need and when. It will be really nice to know what’s ahead of us.

I was doing some research and came across some interesting facts:

At least 8 of every 1,000 infants born each year have a heart defect.

Corrected transposition of the great arteries (c-TGA) is a complex and unusual abnormality occurring in fewer than 1 percent of people with congenital (present at birth) heart disease.

It occurs in males twice as often as females.

So, I would say that means her heart defect is pretty darn rare, huh? Especially for a girl!

Well, we have a big day tomorrow, so I’m cutting this one short. Wish us luck!

Thanks for your support!
-Christy

Gaining weight again

So, we went to the pediatrician today. I closed my eyes and waited till they told me what her weight was…10 pounds, 1 ounce. That’s a 6 ounce gain in 7 days. Last week’s low weight gain really brought down her average gain for the past month, but a few more weeks like this would really help. We are just glad that she is finally in double digits!

On Wednesday we had physical therapy. I think that went well. I had Traci (PT) look at Harlie’s CT reports to help me understand her cervical spine issues. She told me that her first cervical vertebrae (C1) is fused to the base of her skull (occiput). This is what is limiting her mobility in turning her head. I don’t think this is repairable. Tracy thinks that maybe C2 will compensate a bit for this. At some point, when we can work it in, we’ll need to find an orthopedic doctor to help us with her back issues (she also has some abnormalities in her lumbar spine). But, that will have to wait.

As far as her therapy, that went great I thought. Harlie loved the exercise ball. And I think her neck control is really improving.

Today we had occupational therapy. It was our first meeting since we got the results of her barium swallow study. The therapist tried a couple of different nipples and techniques to get her to suck, but she wasn’t interested. She used to take a pacifier, but since she found her hands, the pacifier doesn’t interest her anymore. Anyway, Allison (OT) said that she is going to have to learn to swallow first, then we will introduce the sucking. So she used a syringe to squirt some milk in the back of her cheek.

We are going to have to use a thickening agent so she’ll have more control over the liquid. You mix the thickening agent with the milk and it makes it a nectar or honey-like texture. One thing that we will have to work on a few times a day is trying to get her used to having something in her mouth, other than her hands. Unfortunately, she gets a lot of negative touching around her face with the constant suctioning and trach care. So we need to introduce some positive touching. This whole eating by mouth thing is going to be a slow process.

When we went to see her pediatrician, our day nurse (Brandy) went with us. I must admit that I was very reluctant to have a nurse go with me to the doctor appointments, but I am very comfortable with Brandy, so I changed my mind. I can’t tell you how great it was to have some help carrying her stuff. The best was that I could concentrate when I was talking to Dr. Smith while Brandy was getting Harlie dressed and suctioned, etc. I am totally loving having Brandy here to help me. And I think this week's schedule really worked out because she was here for both PT and OT so she can help me with all that.

The most exciting event of the day was when Harlie decannulated herself (pulled the trach out). Yes, you read that right – she pulled her trach out! I jumped up and undid her ties and put it back in. No biggie. She never skipped a beat. Luckily, Harlie can still breathe through the stoma (hole in her throat) so that makes me feel better. I did some research (there is a trach forum) and evidently, this can be a big problem depending on the child. And it gets worse as they get older. I guess we’ll try some different ties to see what works best. Well, that’s it for tonight. I thought I would be brief. haha

Take care and talk to you soon,
Christy

CT Scan Results

Well, it is late and today was a long, emotional day, so I'm going to make this one short (well, as short as this explanation can be).

Unfortunately, due to some cervical spine (neck) issues, they wanted more x-rays to make sure her spine was stable. They were concerned about the possibility of spinal cord damage and wanted a neurosurgeon to take a look before doing anything else. So, we had to stop the consultation because the only time they could work us in was right then.

But, what we did get out of it is that she is missing some bones in her jaw. We didn't get into details at this point, other than this finding certainly makes her jaw reconstruction more complicated. Something is wrong with one of her cheek bones, not sure what the deal is with that. And because of her cervical spine abnormalities, her muscle is abnormal, or tight on her right side. This makes her favor leaning and turning only to the right. We have no idea what this all means and what the repair, if any, is. And Dr. Magee said that this might explain her odd head shape. Still not sure what we have to do about that.

Luckily, after the scare of possible paralysis, the neurosurgeon said her cervical spine is stable and we can continue her physical therapy. And let me just tell you, when they said spinal cord damage, I freaked about putting her in the bumbo seat! But, he said that the bumbo seat is fine, so whew!

As far as her cervical spine abnormalities... I am in the process of learning to decipher the reports they gave us. One thing I can read clearly is that she only has 5 cervical vertebral bodies and there are supposed to be 7. That would explain her short neck I suppose. I really don't know what any of this means as far as "fixability". So, all of this is going to have to take a backseat for right now. This week I need to learn about a normal heart so I can try to understand Harlie's heart defects. Her heart cath is Monday. Well, that's it. Not what we wanted, but not surprised, either.

Take care and thanks for your support.
-Christy

Another trip to Norfolk

Well, it's Monday night and tomorrow morning we head to Norfolk to meet with Dr. Magee again (her plastic surgeon). We are going to go over her CT scans. We are hoping that whatever we learn, we can handle. Hopefully, nothing “new” – just more details on what we already know would be nice.

I am very glad to report that we finally found a day nurse! She starts on Wednesday and will probably work 3 days a week. She is very flexible, so we’ll just see what works out best for both of us as far as our schedule goes. She is a friend of our friend, Mike. Mike, thank you so much for helping us! I can’t tell you how much I am looking forward to having some help and a little bit of freedom. Well, I have to cut this one short. It is late and we have a long day tomorrow.

Talk to you soon,
Christy

Congenital Heart Defect Awareness Week

Gov. Kaine declares Feb. 7-14 Congenital Heart Defect Awareness Week
RICHMOND, VA – February 6, 2007 –

More than 32,000 infants (one out of every 125 to 150) are born with one of more than thirty-five identified forms of congenital heart defects each year in the United States. Heart defects are among Virginia’s most common birth defects, and are the leading cause of birth defect-related deaths. Many affected families experience substantial medical debt to save their children. Virginia does not offer any financial aid programs at this time. Today, most heart defects can be corrected, or at least helped, by surgery, medicine or devices such as artificial valves and pacemakers. In the last 40 years, advances in diagnosis and surgical treatment of heart defects have enabled nearly 1 million U.S. children with significant heart defects to survive into adulthood. The defect may be so slight that the baby appears healthy for many years after birth, or so severe that its life is in immediate danger. It is important for new parents to recognize these signs and consult their doctor:

o Certain heart defects prevent the heart from pumping adequate blood to the lungs or other parts of the body. This can cause congestive heart failure. An affected child may experience a rapid heartbeat and breathing difficulties, especially during exercise (or in infants, during feeding—sometimes resulting in inadequate weight gain). Swelling of the legs or abdomen or around the eyes also may occur.

o Some heart defects result in a pale grayish or bluish coloring of the skin (called cyanosis), usually appearing soon after birth or during infancy. On occasion, it may be delayed until later in childhood. It is a sign of defects that prevent the blood from getting enough oxygen. Children with cyanosis may tire easily. Symptoms such as shortness of breath and fainting often worsen when the child exerts himself. Some youngsters may squat frequently to ease their shortness of breath.

Heart defects originate in the early part of pregnancy when the heart is forming. Congenital heart defects can affect any of the different parts or functions of the heart. In most cases, scientists do not know what makes a baby's heart develop abnormally. Both genetic and environmental factors appear to play roles.

For more information on congenital heart defects visit www.americanheart.org. Families from the Mended Little Hearts Richmond chapter (www.mlhrichmond.org) and individual families from South Hampton Roads and the Peninsula are available for interviews by calling Michelle Nostheide at 804-965-6512.

Low weight gain

So, we went to the pediatrician yesterday. Unfortunately her weight gain was not what we had hoped for. She weighed 9 pounds, 11 ounces. That’s a 1 ounce gain in 6 days. Yes, you read that correctly. ONE ounce in SIX days! I don’t know how that can be. We went from her best gain ever to her worst gain ever. The only thing they can think is that her gain last week was more fluid than actual weight. Either way, we aren’t thrilled. I guess we’ll just wait and see what next week brings.

I found out tonight that her heart cath is scheduled for Monday the 19th. I don’t know when we’ll know the results of that. Tom put some videos under Family Videos. Just Murphy clowning around. Kelly, my niece, took the videos with her camera during the Superbowl. Thanks, Kelly! We’ll get some video of Harlie smiling and post that soon. She smiles so much! And today at the doctor’s office I know she was laughing. Obviously I couldn’t hear it. But I could tell. Made me happy and sad at the same time. Well, it’s late.

Talk to you later.
-Christy

Eye Update

We had an appointment with her eye doctor and surgeon yesterday. They said that her eye looks really good. They couldn’t believe how well she is closing it. They both admitted that they didn’t expect that kind of improvement in such a short time. Since she’s able to blink and close it pretty well when she’s sleeping, the urgency to fix it is gone. So, they both agreed that it would be best to wait till she’s 3-5 years old before they repair her eye. If they had told me that 3 months ago – I couldn’t have handled it. But I’m okay with it now, I think. The longer they let her grow, the better the repair will look.

I can’t believe how far I’ve come. And in just 4 months. I wanted them to fix her eye immediately! It was so frustrating that no one seemed to understand why. But now I believe that she is going to continue to grow and change – for the better. I didn’t know that 3 months ago. With all of her issues – it has been impossible for me to look ahead into the future. I just take it day by day, week by week. And now, she’s 4 months old and she’s cute and absolutely adorable! Her eye doesn’t need to be repaired to see that. So, if it is best for her in the long run to wait, then so be it.

Well, in just a little while we go back to the pediatrician. I am anxious to see how much she weighs this week. So, I have to run. Talk to you later.

Thanks,
Christy

Feeling better

Well the CT scans went well I think. I have to admit that the anesthesiologist made me a little nervous. He was an out-loud thinker. That doesn’t exactly instill a lot of confidence when you hear it. But luckily, she was so good. I laid her on the table and they put the lead blankets on her. She didn’t move at all. She was wide awake just looking around with her eyes. When I left the room they were going to try to take some pictures without giving her anything at all (since she was being so still). After it was over they said that they barely sedated her – so no anesthesia after all. When we went to the PACU to get her she was wide awake and ready to go.

I have to say that the medical staff everywhere we go seems to really love her. I’m not sure if they gather around to see her because she’s different or what. But they tell me that she is so good and they just can’t believe how tolerant she is. I guess she really doesn’t know any different.

Anyway, we just have to wait until the 13th to find out the results. The shot of Rocephin that she got on Thursday made a world of difference. She is feeling so much better! And the physical therapist brought over one of those Bumbo seats – I put her in it about twice a day for a few minutes at a time. Already I can see a big difference in her head and neck strength.

This week she has appointments with her eye doctor and surgeon, pediatrician and occupational and physical therapists. We might be meeting a nurse, but I am not holding my breath. Well, that’s it for today. I hope you are all well.

As always, thanks for all your support!
-Christy

Getting bigger

Today we had our weekly check-up with the pediatrician. She weighed in at 9 pounds, 10 ounces! That is her best weight gain so far – 7 ounces in 7 days. We are on our LAST pack of newborn diapers. We tried something new with her feedings and clearly, it worked. One of the dieticians suggested that we use formula instead of breast milk for her night feedings. Since the milk hangs in the bag for 10 hours during the night, the fat that is in the breast milk separates and rises to the top. So, that goes in last – and most of it adheres to the bag and tubing. So basically, she gets skim milk. Another dietician said that she never discourages breast milk, and her weight gain was adequate, so she didn’t think that was necessary. But her weight gain is so important to her heart surgery. So, we thought it was certainly worth a try. We started using formula at night exactly one week ago and it looks like it worked.

Unfortunately, she has not been able to fight off her bug on her own. She has gotten worse and due to her high white blood cell count they gave her another shot of Rocephin, and then tomorrow she goes back on antibiotics. Hopefully the Rocephin will help her quickly, because she is supposed to have her CT scans in the morning. We drove down right after her doctor’s appointment today. Because of her heart defects she will be under anesthesia for the CT scans. That way they can better monitor her during the procedure. Well, that’s it for tonight. I’ll let you know how the scans go. We won’t know the results until Feb. 13th when we meet with Dr. Magee again.

Thanks for checking in. Hope all is well!
-Christy