Thursday, October 4, 2012


It's hard for me to write this, and it's not like we didn't know she would need more surgery, but I guess I was still blindsided today.

Fi was a trooper for the apt, and it seemed like it would be a quick one. Ms Sarah was almost done with Fi's echo when Dr Yang came in. He was saying how she's so lucky because things have remained pretty stable, aortic stenosis is still moderate, leak is still mild and her CoA repair is still looking great. After Ms Sarah finished Dr Yang looked over the images to make sure that everything he needed was there. Then he said, "well that's different from last time". He then personally redid the entire echo, my heart sank because I knew something was up.

I knew what it was too, as he went over the same part over and over. He was looking at the sub-aortic membrane. He said since her valve still looks okay we can come back in 6 months, at that point we'll schedule a trans-esophageal echo to get a better picture and decide if it's time for surgery. He wants to try to preserve her valve, so he sounded like the best plan will probably be surgery sooner than later.

As he was talking about is  Laz had a ton of questions, but not me, because I know what it means, Fi's heart sister Jillian is having sub-AS surgery today.  I've decided to refer to it the SFM (stupid f*ing membrane), even with surgery they often come back, saving the valve means another surgery for that down the line, or if the valve has to go at that time future surgeries to replace the valve.

You know the other shoe will drop eventually when you have a kid with a complex heart defect, but it still hurts just as bad when it does.

Thursday, May 3, 2012

Well Monster Check Up

Fiona had her 3 yr checkup to day with Dr E and she did awesome. She is still 27lb 4oz, but she grew an entire inch!!!! Yes lots of exclamation points, because that's a BIG deal in this house, in 2 wks she's grown more than she did in the past 8months! She's officially 3ft tall. Since she did grow in height Dr E said that she's fine with the lack of weight gain, esp since her BMI is good.

As far as development goes she's pleased with how Fiona is doing. We have a couple things to work on, but nothing major. She thinks preschool is going to be great for Fi. One of my concerns was her skin picking, Dr E told me it's a losing battle and even if she gets and infection from doing it, oh well, hopefully she'll outgrow it by the time she's seven. On the topic of preschool we hope to visit the one that we've pretty much chosen soon. I'm also going to set up an apt with the district to get her evaluated (which I guess we should have done long ago).

Sunday, April 29, 2012

Disney, ER, GI and A Princess Birthday

I'm slacking with the updates...forgive me, we've had so much going on!

On April 7 Fi and I headed out to Orlando. We had an awesome time and got to see my mom, as well as some of our other family who actually live an hour away from Orlando.  The highlight of our week in FL was of course going to Disney.  Fiona loved meeting Mickey and Minnie and the Princesses. Her favorite rides were Snow White and the Tea Cups (which she calls the soup Wish we could have stayed on vacation forever.

When we got home it was back to work for me and back to causing trouble for Fiona. She was acting tired, then she started running a high fever wt hich we were having trouble bringing down. We ended up in the ER where she was diagnosed with a URI, and we were just told to keep up with the meds.

The next morning we had GI. Dr F said Fi looks great, except that in a huge shocker (jk) Fiona isn't growing...again. I figured this would happen with going milk protein free again. Fi's around the same size she was in Oct, however Dr F only seemed concerned about her drop over the last month...yeah whatever, I saw the chart and I know it's a bigger issue. She's always struggled and now I'm worried that we're looking at going back on a formula, but I'm not convinced Fiona will drink it if we have to go that route.

The next day (Fri) Fi wouldn't drink or eat anything and was complaining that everything was too hot. So we got squeezed in at Dr Es. Dr E checked her throat, which the ER had not. Well her throat was full of ulcers so she started her on antibiotics. Luckily, Fi was really doing better a couple days thankful she was better in time for her birthday.

Which brings me to yesterday...Fiona turned 3! Yes birthdays are a big deal for any child, but when you've gone through everything she has, it's an even bigger mile stone to celebrate. We had a small Princess pool party and Fi had a great time. She spent most of it pretending to be a pirate and playing with her bestie Lydia. She got lots of awesome gifts and wished for a boat when she blew out the candles. My baby is officially a big girl.

It was 3 yrs ago today that my precious newborn was taken from my arms for an echo to investigate her  "innocent heart murmur" and a few hours later she was in the NICU, critical and being stabilized.  Today is the anniversary of the day our worlds were forever changed, "there's something wrong with her heart." I will post more tomorrow on her heartiversary...but April 29th , even being one of the worst days of my life, is also one of the best. It is never far from my mind that she could have easily gone undiagnosed until it was too late, so it truly was a blessing in disguise.

Tuesday, March 27, 2012

GI & Behavioral Therapy

Yesterday we saw Dr Charles for a follow up and also had our first visit with Dr Clendaniel, the GI behavioral therapist. It was a good apt, I think that it's obvious to everyone that she is really doing better. I hate to think that milk was being that huge of a problem, but after 2 monthsish with no milk it's really like night and day from where we were. We did have a time when she was on Elecare that she had been doing amazingly well and it seems that this girl just can't tolerate milk period.

I also think that using the senna more has helped, Dr Charles is afraid if we do it too often she'll become dependent which is my fear too. Now he wants us to wait 2-3 days before giving it if she hasn't gone, I'm hesitant though because I know how quickly things can spiral with her and also that many times she doesn't fully I'm going to do it my way, because it's working and I don't intend to be doing weekly cleanouts again any time soon.

Dr Clendaniel was very nice, though I'm fairly certain I could have come up with the same ideas on my own lol. She gave us some charts, to work towards potty training. Basically if she goes, or doesn't go as long as she sits for 2 minutes she gets a sticker. We will mark if she does go, did she pee, did she poop. I'm waiting until thursday to start since I'm off and it's very scheduled. I want to make sure we get all set up before I turn over the reigns to anyone else.

One thing that I found strange was that Dr Charles said that since Fi's poop is soft she is probably with holding until she absolutely has to go. He feels that she's afraid to go. However, she does ask to go potty and she will actually poop almost every time. Dr Clendaniel said that she doesn't think it sounds like she is fearful...who knows. What I will say is that I'm 100% convinced that Fi can not pass solid stool, ever since her very first somewhat firm stool at 2-3 wks she has been unable to pass them, I just feel like there's something else that we're missing.

We go back in a month, so hopefully by then we will be able to see how things are going. We'll also see Dr Fortgang next month and I'm curious to get her input especially since Fi's growth has stalled again. She's 27.5 lbs and 34.5-35in

Thursday, March 22, 2012

Cardiology Update

Today we had Fiona's 6m cardio check up. She did soooo well it was incredible really. Despite being in her words "really really grumpy" lol she laid there and let them get all the pictures they needed. It was our quickest apt of all time, we were literally in and out in an hour flat!

First off she had bp, pulse ox and ekg. Her bp was the lowest I've ever seen it at 80/69 (for her right arm). Pulse ox was reading in the mid 80s, luckily it was just the probe, and after switching that her sat was 95-97, and even hit 99 for a couple seconds...way to go Fi.

Next we had her echo and she was even good while they looked at her aortic arch, which is the part she usually hates. When she was done Dr Yang came in to talk to us. He said her aortic valve leak looks a little worse, but otherwise the valve looks stable and he thinks it may last a long time. Such a relief to hear that. Her murmur is significantly changed from our last apt and is now a 6 (the loudest possible murmur where you can feel the murmur through their chest without needing a stethoscope). Since her obstructions are nearly the same as last visit I'm not sure why the murmur changed so much, guess I should have asked lol.

He did ask us lots of questions about her endurance and if she's ever passed out. Thankfully she hasn't, but he made sure to tell us a few times that if she ever faints we need to call him immediately. I mean of course we'd call if it happens, it's just weird that he's never mentioned it before. I wonder if at this age they tend to push themselves too much or something...not sure though?

All in all an awesome apt and we don't need to go back for 6m! By that time she'll probably be in preschool, it's crazy!

Monday, March 19, 2012

Always Something Around Here

Wow, I didn't realize it had been almost a month since my last post. Like usual we've been pretty busy. Fiona was diagnosed with allergies and possible asthma after having a dry persistent cough for over a month. She was started on Singulair and Nasonex.
We've yet to really see whether it's helping because 3 days in she came down with URI and was hacking up a lung all day and night. After 3 nights of no sleep we called her ped who had us stop the Nasonex for now and gave her codeine to help her sleep. It was a welcome relief, with some unwelcome side She's doing better now though so we'll probably be able to take her off of the codeine in the next few days.

At this point she's on Miralax (4x a day), Senna (1x a day), Singulair (1x a day), and Nystatin (2-3x per day) and codeine for now, then back to Nasonex when she's better...I know 5 meds isn't a ton, but sheesh it gets old. We're lucky that Fi's great about taking her meds, but with her going back and forth from my house to her dad and grand parent's it's a lot of keeping up on our end.

This week we'll see Dr Yang for her 6m cardio check up, hoping that everything looks the same. So far the degeneration in her aortic valve has been slow and we really want it to stay that way. I never really get nervous for her other doctors, but cardio always worries me because in the back of my mind I know that we could go and hear it's time for another surgery.

Wednesday, February 29, 2012

Urology Appointment

Yesterday we had our 1st uro apt. Despite being exhausted from having to get up extra early it was awesome because being the 1st apt of the day we were in and out in a little over an hour! First like always they went over her history and why we were there. Then they took her to US. It was a very quick one to measure her bladder, then back to the room to wait on the doctors. 1st the resident came in talked to us for awhile taking more history. She then told us that Fi's US showed that her bladder capacity is really high for an almost 3yr old, and that despite having soaked wet diaper right before the scan she was still about 60% full.

Then we waited for her to come back with the urologist. He said, "she clearly has alot going and I'm not surprised that she's having urinary problems" It was good/ not good to hear that, I always worry that a new specialist will look at her and be like, um, why are YOU here?

Anyway, for now he just wants us to watch her and how things play out. He feels that her constipation is a big factor in the urine retention. He also said that until we really attempt potty training we won't really see what the true extent of the urinary problems are or really be able to try to work on them with her. So he wants us to go ahead with the behavioral therapist to work towards potty training and come back in 3-6 months.

For now he gave us some info on how to try to prevent UTIs, since she's now at high risk for getting them, and also some other things to try to help get rid of the damn yeast infection. He says if we're still battling the yeast when we come back that he wants to do some further testing to see why she keeps getting them. Since it was a first visit and she's not potty trained he's waiting until our FU to decide if she needs to have urodynamics etc preformed. Overall it was a good apt, however, I'm not really thrilled that his only solution for when she has the screaming in pain episodes which have landed us in the ER twice is to give her motrin. At this point, I know that the pain will eventually stop and probably not bring her to the ER right away, but with a toddler it's hard to distinguish exactly what is causing the pain and I'd hate to miss something because it's just "bladder pain".