Christmas Month

Wow, I can't believe I didn't post an update for whole month. We were super busy with the holidays, esp since I was working crazy hours in retail which wasn't much fun at all. Going in to December I decided to give Fi a month off from scheduled doctors visits. My plan didn't really work because Dr Charles' office called to move up Fi's apt from Jan 09, to Dec 20. Luckily, she stayed healthy all month and it ended up being our only doctor visit!

My mom came to spend the holidays with us in New Orleans and she was such a big help with Fiona, I really wish she lived closer to us! After one day here with Fi's insane sleep pattern that she picked up while she was sick all of Nov, my mom told me, "no wonder you're always tired"...it's nice to hear from someone else that your exhaustion is well earned.

We took Fiona to celebration in the Oaks and she actually had fun this year. She loved all of the pretty lights, story land and most of all she liked the train display. It was nice to be able to have my mom go, it's such fun holiday tradition here.

On the 20th we saw Dr. Charles. Fi is back up to 27lb and still 34.5 in. He was really surprised that when we had gone to the ER for the lack of urine output they didn't do an xray or anything to verify an impaction before doing the enema. He agreed with me that it was not likely the cause. So it's still a mystery? Oh well. He wants us to start giving her fiber again (which I'm a little iffy on) but I guess we can give it a shot even though it was a nightmare last time. He also wants us to give her miralax in less liquid so she'll consume it faster since it's ineffective after 20min and she rarely drinks that much that quickly. He also acted a little concerned that her murmur seemed louder, but she hasn't had any symptoms so we'll just stick with our march apt for cardio. By far the best part of this apt was that they let her pick a toy for xmas! She picked a little pink cell phone. We go back in 2mon for follow up.

We had a lot of fun gearing up for xmas. Fi got to see Santa and she actually gave him a hug this yr! On Christmas Eve we baked cookies for Santa and I learned that I only need to make red frosting next year since it was the only color Fi liked. She loved dumping sprinkles on them and we left cookies and milk out for Santa. Funny girl that Fi is, she dumped the milk on the cookies and laughed, "milk and cookies for Santa."

Christmas day she got to open all the gifts that Santa brought including a Slide Set, 4 dollies, clothes, lots of books and DVDs and some special presents from Uncle Keith and Aunt Amanda (a leap frog explorer, rock n roll mickey and cookie monster that gobbles cookies). So much for a small xmas...lol

Endocrinology Etc

Since my last post Fi has definitely improved. She's hardly even coughing, peeing normally and back to her normal self. She has been peeing regularly so I suppose despite my doubt they may have been right. I actually think she's still somewhat constipated so we're working on getting her back to her baseline and after talking with Dr E yesterday we decided that when Fi gets sick we need to boost her miralax.

We had a good Thanksgiving even though Fi was a total grouch and melting down about nearly everything. Did some Santa duty black friday and worked it as well, but I survived both...happy that it's only once a yr.

Now onto Endo. We got into to the car and Fi was fussing and I was like oh great, and then the radio came on and was playing "All of Me" (love that song) she quieted down and I was sure everything would go well today. Dr Vargus was awesome!!! But the best part of the apt was that we found out that Fi is just little. I asked about continuing her high cal diet and he basically shrugged and said we could if we wanted, but she's just going to be small. He said it was clear that she had some issues with growth at one point, but seems to be past it now. What a relief!

ER Visit Pics

She passed out as soon as she was done pooping. LOL

And So the Plague Continues

Fiona has now been sick for 2 wks. We've been to the ped a total of 3x and just ended our long streak of avoiding the ER. Yesterday I brought Fi back into the ped clinic since she was not improving at all and her cough was actually getting worse. Again everything checked out on her, clear lungs, throat, and ears. The said that she might be at the beginning of a sinus infection, but did not want to give her antibiotics yet. We were sent home and told to watch for any green or brown mucus being coughed up, or coughing until she throws up.

So again we went home and she was up a bunch last night. In the meantime since she's been sick she's been constipated on and off but honestly that's not out of the norm for her, esp when she's sick. Well when we went to the ped yesterday I didn't think anything about it. Today I noticed that she wasn't wetting diapers so I called her ped. They advised me to head to the ER since if I went to the clinic they would send us in to be admitted.

It took me awhile to track down the stuff for our hospital visit bag since I stopped keeping one together after going so long with no real bumps in the road. We didn't even have to wait and the triage nurse was very nice. She noticed that her heart rate was a little high at 130 and pulse ox a little low for Fi at 94%. So when we got in the room the hooked her up to the pulse ox to keep an eye on this. They were also convinced she had a fever, which she didn't.

The decided to cath her and get a urine sample thinking she had a UTI. The results came back clear, so they said that they thought her stool being impacted was the problem. We opted to go for an enema clean out there because if it didn't work at home I didn't want to be right back.

Poor Fiona was literally punching herself in the stomach and yelling it hurts, I felt terrible for her. I almost cried watching her, it was bad. After about 15 min she was cleaned out and fell asleep. Sure this is a TMI but in the grand scheme this wasn't that much poop, nothing like the amt I've seen with cleanouts in the past. I'm a little doubtful that this was the problem and if she doesn't start peeing by 10pm I'm taking her to the ER at Children's Hospital because I don't feel like we're getting anywhere with this particular illness at Tulane.

I'll add some pics in a bit...waiting for them to upload

A Sick Little Monkey

So Fi has pretty much been sick for the last week (fever started last wed). She had fever for 2 days. Friday I woke her up and was excited that she didn't have a fever. She was very grumpy though and a couple minutes after waking up she puked. It was all bile since she hadn't eaten the day before. Well since I had missed work 2 days already I decided to go in. As soon as we got to her Dad's house she threw up again. The whole day she kept throwing up and we had skipped her miralax because of that, didn't want to dehydrate her. Well that night her tummy was hard and distended, which freaked me out since she was vomiting and hadn't eaten...long story short she was constipated :-/

Saturday she woke up, no fever, no puking just completely back to her normal rotten self. Going crazy from being home all week we ventured out to a couple stores and got some xmas craft stuff. It was an uneventful day and I was sure she was better...until Sunday

Sunday she woke up with a little bit of a cough, mentioned it to her dad when he picked her up and didn't think much of it. She ended up being up all night coughing her voice got very raspy and he text me at work to say that we needed to get her in to the doctor. So I called yesterday and left a message saying we needed to be seen again, they called back my cell and I was at work so I had to call and leave another message, with another frickin person and tell them all the same stuff.

They called me back the 2nd time at after 1pm so there was no chance of getting in same day. So we made an apt for 1st thing in the AM. Laz (Fi's dad) who usually never worries when she gets sick was worried that we'd need to go to the ER because she was really sick. He told me to see her and decide what I thought was best. When she got home she seemed okay. It is a really yucky cough but I thought we should wait.

So I brought her in this morning. They weighed her and at 1st it said 26lb 6oz but then it was 26lb 8oz after a couple minutes? Regardless this means she's lost a 1/2 lb since Thu and considering how hard it is to get her to gain it kind of sucks. The good news was that they didn't find anything wrong, ears, lungs, and throat are all clear. So they think that she just has a nasty virus and we need to just let it run its course. I would have preferred that they get a better look at her throat though, she was fighting them so much...the resident said she got a good look, but Fi was wiggling so much I'm not sure how she could have. I just can't imagine that with how hoarse she is her throat is not at least red?..Maybe I'm wrong.

At this point I just hope she gets better quickly and we can avoid going back in. We all need some good sleep and healthy time :-)

We Have the "Plague"

So the past week, to put it mildly has sucked completely. It started when I got a tickle in my throat last Friday. Saturday it was sore, but not awful, Sunday it was a little worse. By Monday night I felt like I was dying. I barely made it through my shift at work and when I woke up the next morning I knew I couldn't make it through another. So I stayed home and just laid around all day with Fi and figured I'd be better by the morning.

Well as it became night I realized that I was only getting worse and was actually considering going to the ER, but decided to go buy some OTC stuff and suck it up. Stayed home again Wed. Well in the AM I noticed Fi felt warm, took her temp and it was a little high (which btw was not a symptom I'd had). I was mad because I thought for once Fi would be spared the illness. By Wed night Fi was burning up (fever was almost 103), but she was refusing all fever meds.

Finally got her to take some and called the ped office in the AM. Brought her in and Dr E examined her and said it was most likely viral, but hard to say at that point since fever was her only symptom and everything looked ok. We came home and took it easy, fever stayed around 101-102 all day. Gave her some ibuprophen so she'd sleep better and went to sleep (which I hadn't really the night before)

Well I had to be up at 6 for work and I tried to go to sleep early. Fi was out at 9:30, but I was up all night hacking up a lung. So I was exhausted this morning. Got Fi up at 6:40 and she whined like no other and insisted that she was sleeping. Usually she's not so angry. Brought her downstairs and 2sec later vomit...good news no fever though. So I call her dad because I need to leave for his house like now, and here she is puking, so he said just bring her. I thought for sure she'd puke in the car but she held off until we got to his house. Talked to him at 12pm and he said she was still puking and won't drink. Since then she's actually drank a little and peed twice (which she hadn't done since yesterday afternoon)...so I hope we can keep her hydrated, may call and see if we can get her some zofran.

So we've been busy being sick and I forgot to mention the craziest symptom I've had is that when I sneeze my chest, arms, ribs etc feel like a bomb went off and burn for minutes after...it's awful, I call it the death sneeze, and funny enough when I googled death sneeze it turns out you can in fact die from sneezing.

Sleeping Too Much?...and Other Fun

It's been a little while since I updated and we've been staying pretty busy. Fi had a great time with all of the Halloween activities over the past couple weeks. We visited the pumpkin patch...sort of twice, hung out with some her friends and did 3 different trick or treat days. She didn't get a ton of candy which was fine with me. She looked adorable dressed as Cinderella.

I called her ped office 2wks ago as she'd had some tummy troubles, and her yeast infection was going on 3 weeks and getting worse despite using a topical med the entire time. We decided to go ahead and try Fluconazole (aka diflucan), we did 10mg for a week in addition to the Nystatin. Well around day 5 things started to look better and her yeast infection was gone at day 7. I was excited and thought we were in the clear esp since we've recently started potty training and she's spending less time in diapers. Well to my surprise it was back in full force yesterday and today she was complaining about it hurting.

She also has been sleeping, what we think may be a ton. She will often nap for 4 or more hours during the day and is still sleeping around 12 hours per night. I discussed this with the nurse when I called today and she said we just need to watch her because without any other symptoms they're not really worried about it...so who knows. She was however concerned about the yeast infection and said that we can try Nystatin again for a couple days, but if it doesn't work we need to come into the office.

I've tried to find any info on recurrent yeast infections in children and what can cause them but I've come up empty handed...but i don't think it was: bubble baths, baby soap, laundry detergent, non-zinc based diaper cream, or the wipes we were using since we've eliminated all of those things and she's still getting them.

But the big news of the week....Fi got her ears pierced!!!

Busy Busy Busy!

I feel like all we've been done is run around like crazy people! My work has been a little chaotic to say the least so that hasn't helped. I was off on Tuesday, so we went to get my car worked on (new tire, oil change, fuel system clean, air filter , wipers etc). We spent 3 freakin hours playing in Walmart waiting for it to be done. While we were there I had called her ped office about a few different things, a low fever that's been going on for over a week on and off, flu shot, refill and her stupid yeast infections.

Well I figured they'd just have us come in sometime later in the week but to my shock and happiness they said they were pretty much open anytime all week so just call when my car was done. Called them at 2:15 and had an apt for 2:30, now that is awesome! We got there and went through triage and in another happy moment she is now, ready for it, 27lb 4oz!!! All I can say is wow Scandical! It's helping sooo much, I really can't even believe it.

They checked her out and said that the fever was most likely just viral since they found no source, which is always nice. She does in fact have yet another yeast infection though :-( we've done everything we can do prevent them and they're still coming all the time...I'm considering trying a modified diet to help prevent them, but I'm not going to completely take every fruit etc out of her diet, that would be nuts and I don't think it's worth it.

She also got her flu shot and did awesome, not a tear, and barely even a whimper. She's such a tough little cookie. I was very happy that she didn't spike a fever after the shot because she has in the past. The only issue that I've noticed since she got the shot is that she has been having really lose stools. Had to stop the miralax which I really don't like to do because she often gets very backed up after having the opposite problems, at the same time we don't want her dehydrated so it's what we had to do. I'm not sure if the poop issues and the Flu shot are connected since I haven't seen it listed as a side effect, but I don't see why it couldn't be.

Today is my other off day and we started it where else, but at Walmart, we had to go in because they overcharged my acct by almost $50 last week. Everyone was rude to me about it, as if it's my fault and despite having called about it yesterday and being told I needed to come in Thu between 6am and 3pm, no one knew anything about it. Such a frustrating situation. I still can't believe that not one of the 3 associates that I spoke with today in the customer service apologized at all for the mistake, at least I got my money back, but there have been times where I wouldn't have been able to go a week missing $50 from my acct.

After that drama I took Fi to Chuck E Cheese for about an hour. She had a great time and it was a good time to go since it was all little kids since the big ones are all at school. It was really calm in there which I appreciate because my nerves were a little frayed from Walmart. Since then we've just been running erands, and Fi is supposed to be napping now. I'm a little concerned that she has not peed yet today, but she has been drinking so hopefully it's no big deal. Now I feel like I need a nap just from typing that and we still have a ton more to get done!

GI Visit

Fiona had her 2 month follow up with Dr Charles at Children's today. I was really anxious to see how she's growing. We had cardiology on Sept 22nd she was doing awesome, but in the past couple weeks she didn't really want to eat much, so I wasn't sure whether she'd lost any weight. To my surprise she's actually gained another 6oz (in less than 2wks), she did have a full diaper, but I'll take it :-) Thank you Breeze and Scandical for chunkin this girl up.

Fiona is doing really well and we're rarely struggling with constipation anymore. Upping her miralax was a the best plan. She's been on a full cap daily for the past 3 months and it's been like night and day for her. We even briefly discussed weaning her a bit, but we're going to hold off on that for now since we don't want to mess with a good thing.

Another concern I had going into this apt was Fiona's odd behavior lately. She's been chewing up food and spitting it back out for no apparent reason. I also noticed her sounding like she was going to vomit and then choking after eating last week. I brought these issues and Dr Charles feels that it may be Rumination Syndrome, a behavioral issue where kids spit up undigested food. They're not sure what causes it, but it is usually well controlled by positive reinforcement. He said that punishing usually only makes it worse so we need to praise her when she chews and swallows her food.

We discussed her previous swallow issues, so while the issue isn't a big one now he wants us to watch her closely. His concern is that we may need to do another swallow study if encouraging her to swallow her food doesn't work, if the symptoms get worse, and especially if she begins gagging or choking while eating. Overall good apt and we'll follow up in 2m.

Not specifically related, but I also tried to schedule Fi an apt to get her flu shot. I've been calling about it every week since the beginning of Sept. Well I was told late sept, then I was told 1st week in Oct they'd definitely be in. So after hearing that last week, I called today and they said they're not in yet. Let me also mention that the new phone system at Tulane blows! Instead of selecting speak to a nurse, make an apt, get a refill etc you have to talk to an operator, who then takes a message and passes it along and you have to wait for a call back. I know there are many times when you have to leave a message anyway, but I'd rather select my own department...anyway I digress, after 2 phones calls (missed the call back during GI) we're no closer to getting a flu shot then we were before. Again, I asked why they don't have them when everyone else does, and they told me they don't know, but I can check back next week or take her to Walgreens. So I looked into Walgreens and CVS and neither will do kids under 7, yeah so that's not going to work for us. I wouldn't be as concerned, but last year she got the Flu days before the vaccine came in for her age group at the ped. I'm not sure what I should do, do I call random ped offices and ask if they can do it...ugh.

On a brighter note...Cuteness!
Lion King in 3D...lovin the shades

adorable little fall jacket (thanks uncle Jake and Rachel)

Awesome Cardiology Visit!

Today was Fiona's 6 month follow up for cardiology and it went amazing. First off during triage we found out that Fi finally grew. Yes, you read that right, she is now 26lb 8oz and almost 35in tall. That means she's gained 4 oz and almost an entire inch in the last 2 weeks! After that we went to sit in the little regular room and waited to have her EKG done. She was such a good girl. When they came in and put on her stickers she just sat there and watched. She sat still and after she had fun putting the stickers on me.


After her EKG we went to the echo room. We brought her monkey pillow pet today, thought it would help her to be calm and relaxed for the echo and I think it worked. She chilled there for Miss Sarah, sometimes giving her some funny looks, but mostly she just laid there. She did have a mini-meltdown when they were looking at her aortic arch, she absolutely hates when they do this part of the exam. She started wanting to sit up and saying all done, but Daddy calmed her down with some Mickey on his Iphone.

When the echo was done Dr Yang came in the room to review the images and was really impressed with how well she's doing (although Fi was not impressed with him). He didn't feel that the weird heart beat sounds I heard were anything to really worry about since she's so active and everything else looks good. Her aorta looks good and pretty much everything is about the same as last time. The only issue that he mentioned today was that her BAV is about 10% more restricted than at our last visit, but since she won't have any intervention until it's in the severe range we get stick to the 6 month schedule. Everything went better than I could have imagined, I feel like we're finally in a calm stage and I'm so happy that surgery won't be any time soon. We are so blessed.

The Great Baby Dance Debate

For a while I've gone back and forth on this issue myself, but given Fiona's exceptional attitude lately I feel like she could really use an outlet. For her age it would still be a mommy and me class, but I thought it would be good for her to get to spend some time with other kids her age. She's not in daycare so she doesn't get much interaction with other toddlers.

For a while I had come to the conclusion that it wasn't worth the cost, and that we should just wait until next year. Then I realized she will be preschool age next year and I think that enrolling her in dance now will help social skills and make the transition easier.

Well I talked with her dad about it and he said, well she's got so much going on already with her heart, growth problems etc that he doesn't think it's a good idea to put her in dance yet. He also mentioned the obvious germ issue (esp w/flu season just around the corner). While I see where his thinking is I don't think that a dance class for 2 year olds will be that strenuous, I think it's more for fun. I'm just really surprised by his reaction because he's always the one saying that he just wants her to have a normal life, isn't this part of a normal life? I mean we can't put her in a bubble and lock her up because she has some medical issues.

I don't want to go against him, I just don't think that his concerns are very legitimate. Especially since even if we wait a year she will still be a heart kid. Realistically I think that everything that goes on with Fi really does bother him and that he is scared for her even though he always says that he's the optimist and isn't worried. His fears only come out in little bursts when a specific situation arises and makes him think about the fact that she is not a "well baby" .

This Kid Won't Grow

We had nutrition today and I was hoping that we would get a good report. I really thought that upping her calories, starting her on the Breeze, encouraging her to eat more, etc would have helped, but she has just stalled. In March she was about 25lb, then she was actually losing weight for a while, now she is 26lb and has been for a little over a month. So in 6 months she's gained about a pound all together, which is not enough for a 2 yr-old.

She should be gaining at least a little each day, but this is not happening. She eats all the time, she loves almost every food imaginable, in fact there are only two that I know she will not eat, tomatoes and shrimp. Our nutritionist gave us a new cal powder to add to her food and drinks, hopefully this will help.

In two weeks we have her 6m cardiology follow up, and though they told me 2 months ago by phone that her lack of weight gain is not heart related, I won't really feel sure of that until they examine her. I'm also somewhat looking forward to this apt, because in going 6m I have more questions and concerns then I usually do because this is our longest stretch. I've also noticed in the past couple days that while Fi sleeps her breathing is sometimes noisy. A little worried by this I decided to listen to her heart and was a little freaked out by the pattern. It seemed to beat normally, then very slowly, almost stopping, then pause for a sec or 2, then slowly again and then normal. She had several of these pauses while I was listening. I'm not sure if this is within the realm of normal, or not, but I'm hoping to get some type of explanation when we see Dr. Yang.

Happy Game Day! Who Dat?!?!