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.

Tomorrow's the big day!

Well, it's finally come....Arianna's big surgery is scheduled for tomorrow! She'll be 6 weeks old.  So barring any emergency surgeries that may pop up and bump us, our little peanut will be fixed tomorrow!  We had our pre-op visit yesterday where they told us what to expect.  Basically, they will cut through her sternum and spend 3-4 hours repairing her heart. Her issues are: Dual output right ventricle (DORV), VSD, and pulmanary stenosis.  The most shocking part of it for me is that she will be on heart and lung bypass and that she will have several IV's, most shockingly, in her neck!  I guess it goes directly into her jugular. Just thinking about that makes me want to puke. In addition, she'll have some drainage tubes coming out of her belly and a breathing tube when I see her again.  Luckily, she'll hopefully only be in the hospital for a week after the surgery.

Unfortunetely, we aren't the surgeon's first surgery of the day; we're scheduled for 1pm...surgery start probably around 2-2:30. I'm glad he told us this is about a 3 out of 10 on his level of complexity.

Poor Jesus and I have been feeling kinda depressed the last few days, and today my body just aches. I'm guessing that all the stress we've been feeling inside since we found out about her heart defect is finally coming to a head.

Please pray for us and most of all for precious Arianna. I will update when I can!!

It's been a little while since my last post. Here's Arianna's update.
As of now, her surgery has been rescheduled for 5/17/13.  We met with the cardiologist on Friday and she said that these little heart babies can change for the worse very quickly, so we might as well get it out of the way. And that means we can head back home to SD sooner rather than later.   I'm actually glad we scheduled it earlier because I have a feeling they will cancel on us for more urgent cases.  So we'll see.

Also, before we left the hospital, Arianna did not pass the hearing test in her left ear.  We went in to meet with the audiologist and she failed it again.  They did further testing and though the eardrum is responding, in several of the tests, the right ear responded much better than the left.   She is scheduled for a diagnostic test tomorrow to find out what the deal is and what we are dealing with here.   The audiologist told me not to freak out...I said "look lady, this is the least of my worries! I know she hears something with the right ear so that's good enough for me!"  It's pretty apparent that there is a difference because when I try to soothe her in the left ear, she is unresponsive, but quiets right down if I shoosh her in her right ear.    Tomorrow's appointment is 4 hours long and she's supposed to be sleeping the whole time. They told me to skip a sleep session and a feeding session so she's good and mad...Ummmm, she can't get really upset!! She turns absolutely dark purple because she's not getting enough good oxigenated blood.  So we'll see what happens.

In addition to her ear issue, at her pediatrician appointment on Friday, apparently her eyes are not tracking exactly.   The doctor said she is still young so maybe they are not focusing quite yet, but that I should watch it VERY closely.   And that I should follow up with an optomologist once we are back in SD. 

All of this got me thinking that the slightly enlarged left ventricle in her brain.  Various different doctors told me it was nothing to worry about, but I'm starting to think all these issues could be related.  I've left a message for the Stanford pediatrician to call me back so we can get a MRI and find out what is going on.

On top of ALLLL of this, I get a call yesterday from the local pediatrician that I should come in right away and get Arianna tested for CMV, which is a virus that about 80% of the population are carriers for, but can be lethal for newborns.   The reason she wants to test Arianna is because CMV causes hearing loss in infants and if we catch it soon enough, there are treatments we can start to prevent further hearing loss.   However, the IV medication apparently has pretty severe side effects and they try to avoid giving it to newborns...AWESOME! :(   Pretty much, if she has this virus, she's not gonna get her surgery, because the virus preys on the compromised immune system.  Needless to say, we're praying she is all clear.

I brought her over there to do a urine catch and it only took 4 hours and 4 bags. The first bag fell off. The second bag leaked and we didn't catch enough urine.  As we were changing bags, she promptly peed all over the table as I was talking to the doctor.   She filled the third bag with SOOOO much poop. it was an absolute disaster. Finally, the 4th bag worked.  Phew!

So there you have it in a nutshell.  This poor peanut will be in touch with just about every type of -ologist on the planet!! She sure is sweet though!  :)