Sorry for the delay in posting!! We've been so busy getting back to normal life--this is a good thing!!  We moved back down to San Diego on 6/18 to get back to normal after the 3 month vacation with my parents. The older two are doing well now that they aren't sharing a bed anymore and Arianna is still sleeping through the night and just being a pleasure during the day. Amazingly, we've really adapted well and having 3 kids isn't terrible! haha   The only slightly bad thing is that poor Lexi and Alazne have decided that after 3 months of speaking English only, they've forgotten their Spanish. So it's back to 24/7 Spanish bootcamp at our house!

Arianna is doing AMAZING!  Sometimes I wonder if she ever *really* had anything wrong with her, because she never got sick! Aside from the turning purple episodes when she was tiny, really, we never would have known she had such a sick heart!  

When she was born, she was in the 25% for weight, right there at 7lbs 3 oz.  Well, after she got out of the hospital at her 2 month well baby visit, she had dropped way down to 11% for weight and her pediatrician was really concerned.  It's "normal" to gain about a pound a month. Well, we went in for her 3 month check up on July 3rd and she had gained 3lbs in one month! What a porker! now she's up to 50% for weight! hooray! She really does have rolls, but they suit her!   We actually went to the cardiologist today and they gave her a clean bill of health. Her heart is working wonderfully (though it still has a little leakage, which we knew about) and the cardiologist actually said "this is about as good as it gets".  He did mention that she looks HUGE! he said "i'm not telling you to put her on a diet, but maybe try to scale back a bit." if my mother-in-law heard that she would hop on the next plane out here to give him a piece of her mind! Hmm, don't tempt me!

Other than that, we are allowed to pick her up under her arms again, which is awesome...it's next to impossible to get this little ham out of her carseat by just her booty and head.   speaking of that big ole head, shes getting better with lifting it.  she wasn't allowed to do tummy time for about 3 weeks and as i mentioned, her body grew so fast that it was really hard for her to lift it!

She absolutely loves her sisters--she's so interested in what they are doing and seems to listen intently to what they say. And they love her!! they will not leave the poor thing alone!

Anyways, I just wanted to give you all an update. We are so grateful for all the love and support we've received from everyone.  Having gone through this has really put everything in life in perspective.  The other night when I had all the girls by myself and everyone was crying at once after Lexi woke up Alazne, I thought (for a split-second) "OMG, worst day ever." I caught myself though and realized that no the worst day ever would have been if any one of those days in the hospital hadn't gone as well as it had.   I think we love life just a little more and know that we are truly blessed.

Ruh roh! With happy pics!

Ugh....just when we thought we were in the clear...poor Arianna is having problems. Nothing major, I don't think, but still. 

She has been off tylenol for at least a week, but seems to be in a lot of pain whenever she eats.  She only eats barely a half ounce at a time, when she should eat about 2.5+.  I called our pediatric cardiologist Sunday night and they told me to come to ER and he would meet me there. He was mostly worried about her getting dehyrated, nothing related to the surgery (her incision site looks fine). I obviously didn't want to drive all the way to Stanford at 10pm on a holiday weekend, so I promised to wake her up every 2 hours to feed her.   He checked with the attending doctor and agreed.  Well, it was absolutely exhausting, but I was able to feed her a decent amount every two hours.  I talked with the cardiologist on call this morning and she was ok with me not going to the ER.  Once we gave her tylenol, and heated the bottle up, Arianna ate like a champ today.  She literally ate more than double what she ate yesterday.  She apparently likes her bottle HOT! I'm wondering if her throat hurts and the heat warms it so she can swallow. Who knows.  

Well, I called back tonight to give the update and a third cardiologist jumped on the phone and said I should come in anyways! omg, i said no since it's late again and she's doing so much better.  I guess her concern was that Arianna really shouldn't be in any pain this long after the surgery, so there could be something going on.  I told them I'd come first thing in the morning instead and they were ok with that. 

Jeez, this is stressful!! Poor little thing was eating so little and then just screaming and screaming to the point of exhaustion.  I'm so glad we figured out what she wants.  I want to bring her in tomorrow anyways to just make sure everything is ok.  

Here are some pics of our happy girl and her pretty smile!

Home for good!

Baby Arianna is home for good!! It's about time after spending half of her life in the hospital!  We brought her home yesterday afternoon, not even 6 days after her open heart surgery! She is a champ!!  Wednesday, one of the doctors told me that she may very well be the healthiest baby in the whole hospital, but they were required to monitor her for 24 hours after taking out the chest drainage tube.   We are so happy!  They took the bandage off of the scar down her chest so that is a little scary, but other than that, you would never know that she has been through anything. She even smiled at me for the first time today! She's happy to be home! 

Today we were supposed to take the gauze/tape covering where they took out the drainage tube...I am a tad too squeamish so I made Jesus do it.  It looks scary. But nothing came out (blood) so I guess it's ok!   We go back for our follow up appointment with the cardiologist on Friday 5/31.  Then we are cleared to go back to our normal lives...which means we can finally relocate back to San Diego!

We have been so unbelievably blessed. Being in the ICU with all the sick babies who will probably need multiple surgeries and God forbid may not even make it.  It also gave us utmost confidence in our surgeon Dr. Hanley.  In speaking with other parents, they had tried to find help for their babies all over the country and pretty much every other hospital said they couldn't help them.  Dr. Hanley said he could and did! 
A-M-A-Z-I-N-G!!

We look forward to a lifetime of healthy heart with this little cookie!  I will post a picture of our happy girl post surgery when I get a chance.

Moving on up! With a new happy pic!

Can I just say, miss Arianna is a champ! She has blown through this ICU!  Her breathing tube was taken out at the 24 hour point. She also started eating from her bottle the morning after that.  Been doing awesome. They took her off all meds except Tylenol...which, umm, tylenol, for open heart surgery?  She had her jugular IV taken out today and she kicked out one of the IV's in her foot.  They tried to re-put it in her arm, but she ripped that out too! They then decided that since she wasn't on any IV meds, she didn't need an IV anymore. She showed them!  She is slowly trying to get herself out of here. We were supposed to be moved to the less intensive care unit, but they were full, so we are staying put and waiting.   Other than that, I got to hold her today, which she of course loved.

My only concerns are that she still needs a medication to help her pee, and she is still turning purple when she really loses it. That is not supposed to happen anymore since she is allegedly all fixed! I will harass the doctors daily until they give me the answer I want to hear.

Ok until next time...oh and btw, today I was into the hall and saw spiderman on the roof, about to rapell the building. One of the nurses saw him too and said they needed to call security!   Apparently, though, he was the window washer. Never a dull moment!

Ps...look at this happy camper!

Still touch and go...with pictures!

Well, we are at the 24 hour mark and she is so far doing well. We are still touch and go as she is on two different meds to make her pee. Just, let it flow sista!  Other than that, they are weaning her off the breathing machine and eventually off the sedatives. Then they will take the breathing tube out and apparently she will be mad!

Please see the before and after pics below. Notice the machine with the 8 medications she is on, the 4 IV's, drainage tube, breathing tube, catheter, feeding tube, and I can't remember what else. Lots of .machines for such a tiny peanut.

Hot off the press! They took her breathing tube out! I thought they were gonna wait till morning, but they didn't. Hopefully she does well tonight!

She's out of surgery!

It's 10pm and she finally has arrived to the cardiac ICU. We saw her briefly going from the elevator to the ICU. The surgeon met with us and everything was a success. Unfortunately, her pulmonary valve was too narrow, it measured 4mm and should measure 12mm, so he had to cut it to prevent blockages.  However, when you cut it, leakage occurs, so her heart still has to work harder than it should.  This is not a problem now, but will probably require another surgery to replace the valve in 10-20 years.  There is a possibility, that once the patch is removed, she won't need a valve replacement because of the way he preserved the leaflets of the valve. The goal is for the leaflets to grow and eventually prevent any leakage.  Sorry this is probably like Greek to most, but will hopefully help someone.

Anyways, they will keep her asleep tonight and tomorrow will be another adventure.

Thank you so much for all the prayers.

Now jesus and I will try to get some sleep as we go share couch #3 in a room of couches. This should be interesting!

Waiting waiting waiting

Well, here we are in the surgical waiting room with our choice of Home alone or harry potter for movies...hence why I am updating the blog.

Arianna was absolutely beautiful today. Her baby acne had cleared up and she was just glowing. We were originally supposed to arrive at 11:30 am for a 2:30 surgery. So poor thing last ate at 730...well that's what was supposed to happen.  In my distrust of the timing of doctors, I fed her more like at 8-8:30. Sure enough, I call and they are running about a half hour behind.  I was also allowed to feed her clear liquids until 930, but ended up giving her some pedialyte at About 11. Which, can I just say, she loved! Don't get used to it little lady, we are juice Nazi's! But I digress...

Good thing I distrusted the doctors, wbo, basically don't trust the patients by telling you not to eat for unreasonable amounts of time. We started the surgery FOUR hours late!  Poor Arianna was so hungry...she just kept looking at me like "why are you holding out on me? Just slip me a little." pobrecita.  apparently we were just waiting on the anesthesiologist who they paged twice. She showed up having tuna on the breath and cleaning her teeth. I was not pleased. But I of course didn't say anything because, I was, afterall, handing my baby over to her. So that's where she is.

We went to get some dinner a few hours later and ran into the anesthesia resident who said she did awesome. He, btw, had bloodshot eyes, so he either smoked a bowl after leaving the OR, or was hungover. He mentioned being in the cafeteria because he needed something to drink.  Friday night...i guess so! Pull it together punk!  He also said it took longer than normal because they had trouble getting her iv's in. Which means she'll be black and blue again.  By now the surgery has apparently started, so we are just waiting for the surgeon to come talk to us. Probably another hour.

For some reason, I feel an enormous sense of calm. I can only think it is thanks to all of your prayers. Thank you so much.  I am also absolutely exhausted.  6 months of worry will do that to you.

Jesus is good....well...watching lord of the rings...sorry not harry potter...

Stay tuned for updates.

Oh and ps....it's prom at the hospital. What that means is still unknown.  Stay tuned for that update as well.