Thursday, September 27, 2012

Clinic 9/26/12


Between regular pediatrician visits and the CF Clinic appointments I feel like we're taking her to the doctor every week!  But I would rather be going in for check ups than to be going in because she's sick so I won't complain!

Everything looked good as far as her weight gain goes.  She weighed 13 lbs 12 oz today.  She's taking 6 oz bottles now and we're still adding an extra scoop of formula to increase the calories.  The dietician told us we can start giving her rice cereal now too if we want.

We're almost finished with the antibiotic and she seems to be feeling pretty well lately.  We talked about getting her a flu shot in November since she'll be over 6 months old and we also talked about getting Synagis shots to help keep her from getting RSV.  Dr. R said that while it is important for her to get the Synagis shots, it is even more important for her to be protected from the flu.  I didn't realize how bad it would be if she got the flu but apparently it isn't pretty.  I had already planned on being pretty cautious this winter and making sure she isn't around anyone who is sick but this made me even more nervous!  I would love to keep her in a bubble and never leave the house but I know we can't do that.  So I guess we'll just make sure we all wash our hands 100 times a day and hopefully that will be enough to keep us healthy!

Now for the sad part...
She has to get annual lab work and a chest x-ray so they told us we were going to do that at this appointment.  We went down to the lab and laid her on the table next to SEVEN empty tubes that they were supposed to fill with blood. SEVEN!  Two different nurses and several half-successful attempts later we decided to call it quits and finish the lab work another time.  She was screaming the entire time and it felt like we were torturing her.  Ryan and I couldn't handle it anymore.  They got 5 out of the 7 so we have to try again next month...this momma is not looking forward to it!

Thursday, September 20, 2012

4 Months Old


Baby girl turned 4 months old this week.  She is changing so much and really starting to recognize people now.  Every time someone comes up and talks to her she gets so excited and has the biggest smile on her face!

She's figuring out what to do with her hands.  She'll look at them, put them in her mouth, look at them again, turn them back and forth...it's fun to watch her discover new things.  

She soothes herself and puts herself to sleep by sucking her thumb.  It's something she's done since the day she was born.  I tried and tried to get her to take a pacifier but she always went back to her thumb!
Whatever works...    

We spend all of our time together either at work, dropping her big sisters off at school, picking her big sisters up from school, going to the grocery store, running other errands, and she never complains.  She's always happy!

Her check up today was great!
Height: 24 3/4 in.
Weight: 13 lbs 3 oz

Monday, September 17, 2012

First Round of Antibiotics


Well her list of meds has officially become too much for me to keep track of in my head!  Time to get organized!

On 8/31 E started coughing in the mornings and a little throughout the day.  She also had a pretty stuffy nose so I waited it out for 7 days to see if it went away and when it didn't I called the Clinic to talk to the nurse about what we should do.  It wasn't only the cough I was worried about but I could tell she just wasn't feeling well.  She was arching her back and crying quite a bit which for E is not normal.  She never cries!  The nurse decided to increase her dose of antacid and to go ahead and start her on an antibiotic that she will take for 3 weeks.  The antibiotic will knock out any bacteria that is lingering around in her lungs while she's sick.

So now her daily medicines are:
Cephalexin (antibiotic) 3ml 3x/day
Nizatidine (antacid) 1ml 2x/day
AquADEK (vitamins) 1ml 1x/day
1 Zenpep 10k capsule with each bottle
Chest PT 20 min 2x/day

While she wasn't feeling well I carried her around in the sling quite a bit.  I didn't realize it before this but she hasn't been much of a snuggler.  Usually she just lays right down and goes to sleep or plays happily in her bouncer.  But while she was sick she was happiest when she was laying up against me.  I loved having her fall asleep in my arms!

She's been on the antibiotic for a week now and she seems to be feeling better. I think the antacid adjustment helped too.  She's back to her happy self again and getting lots of work done with mommy!


Sunday, September 9, 2012

Clinic 8/29/12


We met with E's CF team again this month.  She is doing great and growing like she should be, weighing 12 1/2 lbs now.  No changes on her enzymes or meds...still taking Axid twice a day and 1 Zenpep 10k capsule before meals.  Her last 3 throat swabs have grown staphylococcus aureus, which is one of the most common bacteria found in the lungs of CF patients.  It's not something that needs to be treated, though.  They do the throat swabs to check for pseudomonas aeruginosa because that is the one that causes the most problems.  Luckily we don't have to worry about that one yet!

We signed all of the consent forms for E to participate in a clinical trial called BONUS: Baby Observational & Nutritional Study.  It is a research study conducted by the Cystic Fibrosis Foundation where they look at factors that may contribute to poor growth in babies with CF.  Everything will be done at our regular clinic visits and it is pretty much the same stuff we normally do there anyway.  But instead of weighing her once, for example, they weigh her twice: once for her clinic records and then once for her research records.  Same with her height, pulse ox, throat swab, etc.  They also put her in this pea pod that gives a more accurate measurement of her body composition.  She was so cute in there just looking around and smiling at us through the glass!
When they first mentioned this research opportunity to us, Ryan and I were both very much in favor of doing whatever we could do to help.  I hope that the results of this study will help someone else's baby one day just like the results of other research studies have helped us keep E healthy so far.