Monday, August 30, 2010

Lillian is 3 Months Old!

I can't believe we made it to three months already. It really is amazing how much time flies and how much I have fallen in love with this girl. I am looking forward to the next few months SO MUCH! Lily is supposed to be less fussy (according to what everyone says), she can now go to gym daycare (which means I get a break during the day), and it's soon going to be cool enough to go for a walk whenever we want! Plus my favorite pumpkin things will be available ;)

Yesterday we visited the doctor because her spit-up has been very projectile and she is still getting really fussy when she spits up. The doctor switched her from Zantac to Zegerid and said it sounds like she has colic in addition to reflux (because she has been super fussy in the evenings). She recommended we try a probiotic because some studies have shown probiotics help colic. Lillian was also diagnosed with pink eye :P Hopefully the remedies will help her feel better. I am especially intrigued by the probiotics considering I was on antibiotics when she was born, and she was on antibiotics for the first 48 hours of her life.

I do think her fussiness is starting to subside a little. And I've learned some great tips on getting her to go to sleep. When she is fussy, I swaddle her in a Miracle Blanket, put her in the swing, and turn on the blow dryer at full blast (we were using a fan, but apparently that wasn't enough). It almost always works. My hope for the next month is that we can get her out of the swing and into the crib/bassinet, but we'll see what happens. I don't want to force her if she isn't ready.

We have starting taking Lily out more often, which has been great. Last week we went to the outlet mall, and she loved watching the people, (I also had my first 100% nurse in public experience when I nursed her on a bench right in the middle of everything - I did wear a cover). She went out to lunch at a fast-food chicken place, and, again, she had a great time people watching. We've been to the grocery store several times, and she always LOVES this. And we took her to a fancy dinner on Saturday night. This was not the plan - Greg and I had bought a Groupon deal that gave us a five course tasting at 50% off, and our plan was to leave Lily with Greg's mom. But, the deal expired on Saturday and she still wouldn't take a bottle, so we all went together. I am so thankful grandma was there to walk her outside when she was fussy, but, overall it went well (except for the ride home - she screamed for 20 minutes). Here’s a picture of my little sweetheart all dressed up for the evening:

Thursday, August 19, 2010

Postpartum Clinic Visit

Today was my first CF clinic visit since having Lillian. And I got good news - my FEV1 is holding steady at 111%! My last sputum culture still showed normal flora. I still can't believe I cultured PA for seven years and now I have not cultured it for three years. The last time I cultured anything was Staph back in May of 2009.

I hogged a lot of my doctor's time today to discuss a few topics:

The first thing we talked about was the possibility of Lillian having CF. Greg had a genetic test for the 97 most common CF mutations, and it came back negative. However, there are thousands of rare mutations, so there is still a chance Greg could be a carrier, and therefore, there is a chance that Lillian could have CF. Please note that I was aware of all this when we started TTC and I had talked it over with my CF doctor - he said at that time what we had done was enough. However, I wanted to be more informed so I mentioned that I've seen some talk on the CF forums about the need to have genetic sequencing done in order to completely rule out CF. I asked my doctor his opinion on this. Here is what he said:

Texas automatically tests for CF in all newborns by analyzing the blood for a by-product of the pancreas (IRT). Even people who are pancreatic sufficient, (like me), will show abnormal test results. If the levels are abnormal, a sweat test is performed. After that a genetic test is done. So, with Greg passing the 97-panel test and Lillian passing the IRT test, the odds of her having CF are very, very small. Doing full genetic sequencing is unnecessary.

He further noted that the state of California is automatically performing full genetic sequencing on ALL newborns, and they are finding all kinds of new mutations in children that have zero symptoms. There is debate in the CF community if these people really have CF and about "what to do" with these cases.

Please note that I am NOT making any judgments about what other people choose to do regarding genetic testing. I am just sharing the information I received.

The other subject I brought up was a new school of thought I heard about cases like mine: Instead of "mild CF" perhaps I should consider myself having "late onset CF." I mean, I DO have CF - I have sinusitis, I get lung infections, I cough up junk. My lungs are probably getting damaged, just more slowly than the typical CFer. But someday, (without proper treatment and new drugs), my lungs are going to be really bad. I will need to spend time in "Club Med." I may need a lung transplant. Eventually (barring something else) CF will probably kill me. When? I have no idea and neither do my doctors. But I'd like it to be later rather than sooner. Actually, I'd like it to be never because death by CF sucks. I don't even want to be hospitalized all the time in 20 years.

So I told me doctor, "You know, you are so used to looking at really bad x-rays. Sometimes, I feel like, when you look at mine, you think 'she looks great' and send me on my way. But I want to know what is going on. Please tell me if you see mucus plugs, or a small amount of lung damage. It will motivate me to take care of myself." He told me that chest x-rays don't really give much information regarding small airway damage, it just tells him if something major is going on. And he confirmed that people can be experiencing lung damage even when their PFTs are holding steady. So he is sending me to have a chest CT scan done. Based on those results, we will decide if I should add more airway clearance and/or Pulmozyme to my routine.

The last thing we talked about was my GERD. I mentioned that I am sick of waking up and needing my inhaler. So I am going to see a gastro. Hopefully we will be able to get this under control.

So, that's that. Greg stayed home with Lillian so I could go with out having to worry about her fussiness. She did pretty well for him - she slept most of the time, had a happy period, and then she got hungry and refused a bottle, so there was about a half hour of crying until I got home. I really hope she will take a bottle soon because I'd like to be able to go on a date with my husband!

Friday, August 6, 2010

Two Month Pedi Appointment

Lillian had her two month doctor visit last Friday. I was soooo nervous beforehand because she had to get five shots. The nurse who administered them rocked - she did them so fast that Lillian barely had time to cry before they were finished. She did scream, of course, but she calmed down quicker than I expected, (nursing really helped with that!).

We saw the other pedi at the office this time, and I love, love, love her. She is younger than the man Lillian has been seeing, and not nearly as old-school. She is much more sympathetic to our sleep issues, (Lillian will only sleep in her swing), our tummy time troubles, (tummy time = face plant into the floor and screaming :/ ), and she made me feel so much more reassured about what we are doing. She agrees that two months is too young to cry it out and said we really don't have to worry about transitioning her to her crib until 4-6 months. And she said holding Lillian over our shoulders so that she has to hold her head up = tummy time, which rocks because Lillian loves doing that and looking around. I think I am going to request this doctor from now on.

Lillian is growing well. She is in the 45 percentile for height and weight and the 60 percentile for head circumference, (her daddy has a big head). The doctor said she is very alert for a two month old, and commented on how her smile "took up her whole face."

I asked about the possibility of a milk allergy, and the doctor said that, if she had one, it was most likely mild because she hasn't had significant blood in her poop. She also said the rashes were normal. So, she wanted me to go one more week on the dairy elimination diet, and then gradually add things back in to see if there is any impact. I do think Lillian's diapers look less mucusy after cutting out all dairy, but I am going to try adding some things back in because this diet is so restrictive. I just started eating a few things with dairy in them, (like fake cheese powder and a Lean Cuisine containing whey), and haven't noticed a difference in Lillian yet.

We also walked out with a prescription for Zantac, because Lillian spits up a ton, gets the hiccups all the time, fusses at the breast, and cries when we lay her flat on her back, (except when she is getting her diaper changed - then it is party time). So, far, I have not noticed that this has helped. She has been extremely fussy the past few days and spits up so much. Today she projectile spit up over my shoulder and all over the floor, and was screaming and arching her back, so I went to Walgreens and bought some Mylanta, as the doctor suggested. She just got her first dose, so we'll see if that helps at all.

In other news, Greg and I realized Lillian is not napping well. We figured she would "just fall asleep if she was tired" and have been putting her in the swing in the living room, but she likes to fight sleep to watch the action (by "action", I mean me cleaning :P). There have been days where she hasn't napped AT ALL, and others where she has taken maybe two 30 minute naps. So, since last Thursday, we have kept the swing in our bedroom, (where she sleeps at night), and left the fan running for nap times, and it seems to help. We also put her down as soon as she starts yawning and getting fussy. She'll protest sometimes, but then fall asleep pretty quickly. She has been napping a lot more, and I am learning her schedule - it seems like she can only be awake 1-1/2 to 2 hours between naps.

So, between the napping, the milk allergy, and the reflux, I was hoping we would figure out the reason for her fussiness. But, so far, that has been a big FAIL. She still likes to cry and fuss all the time and I still feel like I can't leave the house. I've also tried two different slings and she will only tolerate one of them for a few minutes. I love her so much and I hate seeing her upset all the time! I really hope this gets better soon!
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