Anyone who knows me well can tell you I LOVE BIRTHDAYS!  I’m like that girl on the Sesame Street episode that goes around the world to celebrate everyone’s birthday and then gets back and it’s her own (except I would never forget mine).  In fact, I consider my birthday to be a season running from January 15 to February 15.  Now that I’m a mom, the excitement of birthdays has switched somewhat from my birthday to Faith’s birthday.  And the countdown is now on for Faith’s birthday — she will be 2 on September 30.  I am soo excited and I’m pretty sure Faith is too.

Today, we picked up the invitations for her party and they will be going out soon.  I can’t wait!  The invitations are adorable and perfect for my little princess.  When you ask Faith what kind of party she’s having, she says “bees”.  We’re having a bumble bee themed party for her.  Woo hoo! 

It’s hard to believe she’s going to be 2 in less then a month.  Looking at her, she doesn’t look a day over a year old but once she opens her mouth and starts talking, she’ll blow you away.  Billy said to me today that looking at her, it’s like she’s turning 1 all over again because she’s so tiny.  She’s walking more and more and is now into doing whatever the television tells her.  If Dora says stand up, Faith gets right up on her feet.  If the Wonder Pets tell her to cock-a-doodle-doo, she’s standing right there doodling.  The other day I almost had to take her Little People’s plane away from her because she was yelling at one of her guys “seatbelts on!  Be safe” and when he wouldn’t listen, she’d get louder and louder.  Ahh the stressful life of an almost 2 year old :). 

We go back up to Boston on the 21st for a GI appointment and (hopefully) a dentist appointment.  We’ll be staying overnight that night and having her usual cardiac appointments on Wednesday the 22nd.  I’m thinking about switching her GI care to someplace more local but for this appointment at least, we’re Boston bound.  We haven’t stayed overnight there since Faith’s cath in June. 

So that’s pretty much it for us, Fatih continues to do great and amaze us each and every day.  She’s learned pretty much all her colors (with about 85% accuracy), can count to 10 (though she skips 3 most of the time), and can sing the ABCs (though only about 1/2 the letters are actual letters, the rest are mumble jumble).  She’s really turning into such a little clown.  We are so very lucky and excited to plan for the big 2!!!!

Posted: September 1st, 2010 under Uncategorized.
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We were up in Boston for Faith’s monthly visit yesterday and things went really well.  Billy went with me for his first regular monthly appointment since my mom (who usually goes with me) is away and my sister’s car caught on fire last minute (the nerve of her) and couldn’t come (don’t worry, no one was in the car at the time).  Now that we’ve been going to Boston for the same thing month after month, things are starting to run smoothly.  Faith had her sedated echo at 8, then recovered until 1215, then was discharged, we grabbed a quick lunch, then off to her 12:45 lung scan.  The girl doing the lung scan must be new though because she had a very hard time getting Faith’s IV out of her foot and ended up taping gauze to hold it since she couldn’t get it to stop bleeding and Faith was just too upset. 

Then off to the doctor’s appointment.  faith’s usual doctor was not in this week so we saw someone else from the pulmonary vein stenosis team.  Her echo looks really good, the left side continues to look amazing, the right looks the same.  Good news.  The lung scan however showed a decrease from 33% blood flow to the right in July to 21% blood flow this month.  This is disappointing but not unexpected since that’s been faith’s trend since we started this.  This doctor said too that the decrease could be related to the fact that she has so many collateral veins so it might not be accurately measuring.  Who knows?  Anyway, they’re going to have her regular doctor review this visit next week and have her contact me if they feel they need to do anything.  My guess is nothing this month but that we’ll be heading to the cath lab in the next coming months like we’ve been doing. 

This doctor sent Faith for an xray and said that she has some fluid on her right lung (something we knew and is very common in pulmonary vein stenosis kids) so they increased her Lasix (makes her pee) until Saturday when I have to take her to her regular pediatrian for bloodwork and then put her back on her regular dose.  I kind of feel like this is not going to do anything and that if her regular doctor was there they would not have done this but….it’s not that big of a deal.  Just a lot of pee :).  hahaha. 

Other than that, yesterday’s visit was uneventful.  In other news, Faith continues to do great.  She talks non-stop and amazes me with how many words she knows.  She’s learning her colors and counting.  She gets her colors right about 80% of the time and her knows her numbers but doesn’t have them in the right order.  She’;s also starting to recognize letters and is constantly asking us “what’s this?”.  She’s also developing an obsession with construction trucks thanks to her cousin, Braydon, who points them out everywhere we go.   Faith’s 2nd birthday is right around the corner and we are starting to plan her party.  I can’t believe how fast the time is flying by! 

Posted: August 19th, 2010 under Uncategorized.
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I almost forgot to share….FAITH IS WALKING!!!  Well, I use the term “walking” loosely but she’s taking steps!  Woo hoo!  On Sunday she started standing on her own a lot more, pushing off from my leg to stand and dancing (she has some serious moves — one of her favorites right now is “head shoulders knees and toes” though she doesn’t believe me that holding your hands behind your back does NOT count as shoulders).  Then she started taking steps!!!  First real steps with no tears!!!  Woo hoo!!!  She was sooooo proud of herself and I am one proud Mommy!!!  Her max so far:  12 steps.  Woo hoo!!!  She doesn’t really love teh walking and prefers to be carried but she’s gaining confidence.  Goal:  have her walking confidently by her birthday (in exactly 70 days for those of you keeping count).  Woo hoo!  Go Faithy Go!!!!!!!!!!!!!!!!!!!!!!!!!!!

Posted: July 23rd, 2010 under Uncategorized.
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Faith went up to Boston yesterday for her monthly appointment and things went GREAT!!!  Tuesday, I found out that Faith would not need to be inubated (breathing tube) the way I thought she would.  I thought because she was having a CT scan done, she automatically would need it and, with Faith’s history, that usually results in an admittance.  Her not needing the breathing tube greatly increased our chances of being able to go home. 

Things went by sooo quickly and so incredibly perfect.  Her sedated echo and CT scan were relatively on time and we were discharged from the cath lab by 1 PM.  This has never happened for us.  Usually, we end up with some sort of mishap (usually a grumpy baby whose continual screaming cause her oxygen levels to drop too low for them to release her, causing us to be stuck at the hospital for hours on end while waiting for Faith to finally take a nap so that her numbers could come back up….ahhh, our monthly disaster….). 

While in the cath lab (where she had the echo) recovery, Faith’s GI doctor came by and said that we’ll be switching over her g-tube from the long tube that she’s had since March to the Mic-Key button (a smaller, more permanent feeding tube) in October.  Initially, it was going to be August but with cardiac kids they often wait a really long time to make sure it’s healing right.  Faith’s tube is healing fine, it’s a little irritated from all the swimming Faith’s been doing (she LOVES the pool) but they’re going to have us put some cream on it to help.  I feel a lot better knowing that there’s an official plan for switching her tube over. 

We met with Faith’s cardiologist and oncologist who both said that Faith is doing great.  Now for the big news:  Faith’s cardiologist said she’s doing AWESOME!!!!  Her lung scan has stayed pretty much the same (33% vs 34% last month) which has never happened (she’s always had a bigger decrease each month).  Her CT scan showed that her gradiant has increased slightly from 4 to 5 (lower is better) but that it’s changed so little in the 6 months since her last CT that it’s considered insignificant.  But the really super duper awesomely wonderful fantastic news is…….FAITH’S VEINS LOOK BETTER!!!!!  Overall, based on all the testing that Faith has had over the past 6 months and the two CT scans, there is a definite improvement in Faith’s pulmonary vein stenosis.  This is HUGE!!!!  The medicine is working!  Faith’s cardiologist says that she’s AWESOME and doing soooo wonderfully and that she just has to keep doing what she’s been doing. There is NOTHING that they’re worried about right now! 

I can’t believe how fortunate and blessed we’ve been and how thankful we are to have switched her care to Boston….this July 21 was a ray of sunshine and hope and optimism.  When I think back on last year’s July 21….our world was collasping around us….they were saying Faith might not make it and that there was not much else they could do.  Last July 21 was the worst day of my life.  This July 21, I’ll gladly take a repeat of EVERY month!  It’s amazing how far we’ve come in a year! 

Posted: July 23rd, 2010 under Uncategorized.
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It’s hard to believe how quickly Faith is approaching her 2nd birthday!!!  She’s doing great since her cath in June.  Her O2 sats have been mid to high 80s which is great!  She’s getting big, we’re up to 20 lbs now, something we were striving for for MONTHS!  We are now able to have her carseat facing forward.  Woo hoo, go Faithy!  She’s getting closer to walking though some days I get so frustrated with her that she just won’t let go.  My newest goal is to have her walking by her 2nd birthday but she’ll do it when the time is right, Mommy just has to be patient :). 

We’ve had some pretty major changes going on lately.  On July 3, Faith’s Aunt Karen got married so Faithy now has a new Uncle Ryan who she loves.  Faith and her cousins had a great time being flower girls and ring bearer at the wedding though no one really wanted to go down the aisle.  We quickly moved from wedding mode to moving mode and moved into our very own house in July 4.  Thanks to about a dozen friends and family, we were able to move just about everything to the new house in a day.  The rest is slowly making it’s way over to the house from our condo, about 15 minutes away.  Faith loves her new house, especially because the hardwood floors make great racing areas for her cars :).

We head up to Boston for our monthly check up on July 21.  This is Faith’s 6 months of being on Gleevac so she is having a CT scan done in addition to her normal sedated echo and lung scan.  She has to be intubated (breathing tube) for this test which brings with it a higher risk of being admitted for the night.  Hopefully not, especially since July 22 is Billy’s birthday.  Last year’s July 21 was the worst days of our lives so I’m a little nervous with being at a hospital on the same day again…

So that’s it for now from the land of the world’s most amazing little girl.  She continues to amaze us each and every day with her constant talking (she’s talking in 3 and 4 word sentences now).  She is the happiest little girl ever and we love her so very much!  She is without a doubt, the center of our world.

Posted: July 13th, 2010 under Uncategorized.
Comments: 2

Hospital time is like no other.  If they tell you 5-10 minutes, you’re looking at more like an hour.  If they say an hour, oh boy, you’d better make yourself comfortable for at least 3.  They suck you in and make you think that maybe 10 minutes will actually be 10 minutes so you don’t go to lunch, the bathroom, nothing, in fear that the split second you leave the room is the exact moment someone will be looking for you.  And if you miss it….well, then you’re looking at another 10 minutes (or hour as the case may be).

The last three days have truly been run on hospital time.  Monday we headed up to Boston for pre-cath testing.  Going in, we figured an hour or two tops since she only needed bloodwork, height and weight, and consent.  Somehow, this took us 6 hours.  What were we doing for those 6 hours, you ask?  Nothing.  Sitting around waiting for “5-10 minutes”.  Ahh!  We decided to come home Monday night because Faith’s cath wasn’t scheduled until 12 PM (the cath doctor told us right then to expect a 1-2 hour delay on this) so we figured it would be better to take a hungry baby in the car where she could sleep part of the morning rather then be there and have to entertain her with no food all morning. 

So Tuesday morning, we headed back up to Boston for the actual cath.  We got there at 11, I asked how far behind they were and if Faith could have juice, at 12:30, they finally said to give her some juice (which automatically means the cath is at least 2 hours from then).  Faith finally got taken in at 4 — 4 hours after her scheduled appointment.  And then the waiting began.  Caths are supposed to take 2-3 hours, we’ve never had one that short with Faith.  At 7:40, the nurse told me that Faith was going to be transferred to the ICU for the night, she didn’t give any reason why so I went into panic mode as to whether it was because it was so late or because soemthing had gone wrong.  She said that they were just finishing, we should go up to the ICU waiting room and we’d be able to see her in 30-45 minutes later (so around 8:15 or so).  At this point, we just sat.  And sat.  And sat some more.  Faith finally was brought to the ICU around 10, we got to see her at 10:45.  Way to go hospital time….way to go….

So for the results….things went GREAT!!!!  They dilated the right pulmonary veins and were able to restore some blood flow to the lower right lung lobe.  Nothing needed to be done to the left side which is HUGE!!!!  Earlier in the day, they had told us that Faith’s xray from Monday showed some fluid on her right lung so while they were in the cath lab, they tried to drain it but couldn’t get anything out.  They believe that the  narrowed veins caused the effusion (fluid pocket) so in ballooning open the vein, they are hoping that the effusion will fix itself.  The only issue Faith had in the cath lab was her heart rate dropped at one point, but they gave her some medicine and she bounced right back.  This wouldn’t have landed us in the ICU except that it was sooo late so they just sent her there for observation. 

Wednesday morning, Faith had a lung scan done which showed 34% blood flow to the right lung!!!  This is FANTASTIC!!!  Last week, her right flow was less then 8%.  So the lung scan and echo they did yesterday both show that the cath was a success and, at least for now, the right pulmonary veins are open!  Woo hoo!!!!

Faith had a very sleepy day on Wednesday, which is normal for post cath day.  We ended up being in the ICU until 3:30 by the time they got everything finalized for us to be discharged (again, thank you hospital time, we were told we’d be out at 12) and she pretty much slept the whole day.  The only thing she wanted was drinks.  Normally, Faith drinks about 10-15 ounces a day.  Yesterday she drank 12 oz in less then a half hour which is crazy!  Unfortunately, her body can’t handle that much at once so she threw up but she wanted more right after.  She ended up drinking 5 or 6 juice boxes through out the day.  I have never seen her so thirsty in her entire life :):):).  

So today, we are home and Faith is getting back to her usual self.  She’s playing and talking and getting more like my little Faithy girl.  She looks great and we just pray that this time, the pulmonary veins decide to stay open!!!!

Posted: June 24th, 2010 under Uncategorized.
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Another long, long day in Boston behind us :).  We left home at 4 AM, Faith’s sedated echo was running late so they didn’t take her until 10.  She was done by 11, but she was supposed to be in lung scan at 12 but they wouldn’t let her go because she hadn’t been out of sedation long enough.  So they decide to postpone her lung scan which means her appointment with her cardiologist at 12:30 had to be postponed.  They finally went to discharge her from the echo for her lung scan at 1:30 and her O2 sats started dropping.  They were sort of floating from the low 80s to the high 60s.  Then when she would cry, they would go into the 50s.  The anestesialogist said she couldn’t release her with sats in the 60s.  So we had to have a nurse come with us with some monitors to the lung scan. Faith was also VERY angry at this point. 

She’s never had a negative reaction coming out of anestesia but this time for some reason, about an hour after the echo, she was just sooo grumpy and inconsolable.  She was screaming her head off for no reason, nothing I did made her feel better.  Then about 2-3 hours later, she snapped out of it.  Her color got much better, her sats went back up into the 70s….no reason for her to be so angry but thankfully it was relatively short lived and didn’t land us in the ICU for the night. 

So on to the results….the echo and lung scan show that the stenosis on the right side appears to be getting worse.  They feel that after 3 visits, they have enough information to say it is definitely treading downwards.  Not good news, but really, not unexpected.  The left side however, looks fantastic.  Woo hoo!!!  So we need to make a decision:  cath or no cath?  Pros:  we might still be able to open up the veins on the right side and have the right lung live to see another day.  Cons:  caths are always dangerous and with her left side so good, we could just decide to give up on the right all together at this point.  So we decided to go ahead and do the cath.  Any chance at saving the right lung is worth it to us

Unfortunately, the cath lab was booked for today so we are hoping to get her in early next week for a cath.  We went in expecting a cath, and came out getting a cath.  The upside, we got to come home and sleep in our own beds.  Now we just prepare ourselves for what next week has in store for us….keep those prayers coming!

Posted: June 18th, 2010 under Uncategorized.
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We’re hading back to Boston tomorrow for Faith’s monthly sedated echo and lung scan.  It feels like we haven’t been there in forever (in reality it was only 3 1/2 weeks) and honestly, I haven’t missed it.  As usual, I’m scared out of my mind.  Faith’s O2 sats at home have been pretty good, low 80s mostly but her fingers are a little blue lately.  It’s hard sometimes to tell what’s blue and what’s just dirty 20 month old fingers :).  This is the first time in several months though that we’re going and she’s not either getting a cold, getting over a cold or something else cold related.  Knock on wood she doesn’t wake up tomorrow morning with something! 

Since we barely escaped a cath last month, I’m preparing myself for needing one this month.  If she does, it would probably be Thursday though they didn’t book the cath lab in anticipation so who knows?  We are leaving at 4 AM to be there for 8 AM.  She’ll have her sedated echo, then the lung scan, then we have a nutrition appointment at 2, then cardiology appointment at 3:30.  So best case, we’ll be out of there around 5 tomorrow night.  Loooong day ahead of us.

In other news, Faith is getting closer and closer to walking.  She’s standing for 1 minute + at a time and seems to really like it.  She’s very sturdy when she’s standing so we’re definitely getting closer.  She’ll take steps once in a while but mostly it’s during her PT sessions.  Her PT is amazing and has really made significant progress with her.  We have a self-imposed walking deadline of July 3 for Faith because that’s my sister’s wedding day but I’m not so sure Faith is going to cooperate.  Hey, as long as she’s walking by college, we’re good to go :):):).  When it comes to talking though, Faith is unstoppable!  She’s doing 2, 3 and 4 word combinations now and is getting clearer and clearer.  She comes out with some of the funniest stuff!  Her newest thing is that her and I are on a first name basis.  So if I don’t answer to “Mommy” she tries out “Erica” to see if she gets what she wants…she’s such a clown :). 

So that’s it for us for now.  Please say an extra prayer for Faith tonight that tomorrow’s test results go well and that her right lung is still functioning.  She’s such an amazing little warrior :):):)

Posted: June 16th, 2010 under Uncategorized.
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One of the things I’ve learned about Faith in her almost 20 months is that she likes to keep the doctors on their toes.  When she was first born and had her setback the night of her surgery, they were shocked that she bounced back so quickly.  In July at her cath, they told us to prepare to be in the hospital a while; we were out the next day.  In October after being in the hospital for 2 weeks already for pneumonia, they said to plan on being at the hospital several more weeks; we were out two days later.  And now.  In the beginning of May when Faith’s lung scan and echo showed restenosis, they agreed to redo the tests in 10 days (yesterday) but booked the cath lab in anticipation of a cath today.  

I wish I could say that yesterdays results showed that early May’s were wrong but they were not BUT they were the same.  The same means that it still looks like possible restenosis but not enough to warrant going to the cath lab today which is huge.  They are confident enough that if she is having restenosis, it’s slow enough that they can wait three more weeks until her next appointment.  Then they will redo the lung scan and echo and make a decision if they need to head to the cath lab then.  The disadvantage of waiting (though small):  it may be too late to save the right lung at that point if the stenosis has gotten worse.  The advantage of waiting:  Faith’s last cath was only 8 weeks ago, the longer we can wait the better.  Basically they said we could go either way but because the right lung is only getting about 20-30% flow as it is, it’s not top priority and since the left looks great, they think it’s safe to wait. 

So it’s sort of big picture not so great news because the right has not really gotten better since December’s surgery but good news for this particular visit that she does not need a cath right now.  We are learning to take things one day at a time and focus on each visit as they come instead of figuring out what the big picture will ultimately be.  Today, we are happy.  We thought for sure she would need a cath today but, in typical Faith fashion, she through us for another loop and did just fine.  Faith looks great clinically and takes everything in stride.  Yesterday was a long day; we left home at 4 AM, got home at 10:30 PM but today Faith is back to her usual happy self. 

Posted: May 21st, 2010 under Uncategorized.
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We go back to Boston tomorrow for a redo of Faith’s May testing.  I’m scared.  I’m scared that they’re going to give up on the right lung or that things will be worse or something.  They said if she looses the right middle lobe (which is what they’re checking for) that it doesn’t mean she looses the bottom right but I don’t know what that means for future prognosis of the right side.  I’m just so scared that we’re going to lose the right side completely.  Then I think, even if we do, Faith would then become a candidate for a one lung Fontan at some point.  In some ways, it wouldn’t be terrible if we lost the right side because then they could start thinking about an actual timeframe for the Fontan.  It would still be a year off but at least we would have a starting point.  I don’t know, I’m just so scared today. 

Plus Faithy hasn’t really been herself today and yesterday.  She was crabby all day yesterday and completely to our surprise, she started vomiting bile.  The first time I just figured was fluke, she had coughed and I thought it just went down the wrong way.  Then over the course of the next two hours, she vomited bile three more times.  I called her pediatrian and left a message.  Meanwhile, I gave her a dose of Zofran (she was due anyway) and an extra dose of Prevacid.  By the time the pediatrian called back 1/2 hour or so later, Faith was dancing and talking and eating so I thought things were fine.  But in talking with him, he said he was a little concerned her intestines twisted because of the bile vomiting but then he said that she would be in pain which, clearly, she was not at that point.  So he said that he didn’t think that was it but if she vomited again, we were going to have to take her to the ER for an xray.  Thankfully she did not and was fine the rest of the day and night, happy as could be! 

No sooner do I hang up with the pediatrian then, as I’m getting ready to make dinner, the knife slips and I slice my finger open.  Lovely.  Blood everywhere, wouldn’t stop.  Billy was about 5 minutes from taking me to the ER for stitches but it’s not that bad.  It’s a bad cut and it hurts like a beast but luckily, it cut me on an angle and I don’t think I hit anything.  At this point, it’s just bandaged and sore.  :(.  Faith is obsessed with trying to touch the bandaid.

I guess Zoey felt left out on the action because no sooner do we get my cut under control that Zoey starts vomiting and poops on the carpet.  Ahhhh!  Not a good day to be a Venezia.  Thankfully, everyone is doing better today.  My finger still hurts ALOT and Faithy is still a bit grumpy on and off today but….we’re getting there :).  Faith had physical therapy today and did great standing on her own!  My little girl will be up and running before we know it (deadline:  July 3)!!!

So tomorrow we go to Boston and find out what the deal is.  Please keep Faith in your prayers tomorrow, that she not require a cath right now, that her right lung be saveable, that she soar through the testing with flying colors, and that God continue to heal our beautiful little princess.

Posted: May 19th, 2010 under Uncategorized.
Comments: 1