Pictures of January 12th: Pre-Op... Day Right Before Surgery!

These are some photos of us the day before Luca's surgery... Again, we were trying real hard to crack those smiles...


Luca in the car leaving the house to go to the hospital for all the pre-ops...


After we completed all the pre-ops we were free to go for the day and we went for lunch... Here Daddy is making sure Luca eats his entire "super soup"... he needed to eat well...


After eating a little play time... again that Elmo game always makes Luca laugh...

We then decided to take a walk in Santa Monica... we also went there the day before Luca's 1st surgery 2 yrs ago too...it's like a tradition now... we like to go there to enjoy the views, look at that calm and gigantic ocean, pray, meditate, think about life and try to relax... it really helps us!

Beautiful sun set... I almost cried looking at this sun set too that day... it was so peaceful...

It was a gorgeous day and not too cold...

Daddy and Lulu at the Santa Monica Pier...

With Mamma already now at the Ronald McDonald House... this is their play room...

Lots of toys and things to do there... I really enjoyed it...

Taking a long nice bath the night before....they told Mamma to really wash my chest well with anti-bacterial soap and water...

Right before we went to sleep...relaxing with Daddy in our room at the Ronald McDonald House in L.A.... what a nice room we had! ;o)

The days before the surgery...

During the days before the surgery we were trying to keep as normal life as possible even though our hearts were so heavy and our spirits were overwhelmed with apprehension... But we couldn't despair, we had no choice...we HAD TO manage the situation... like I've been saying, we HAD TO be strong for Luca and he HAD TO show him that everything was going to be ok... Not saying it was easy for us, in fact, it was almost unbearable at times....at one point I was crying daily which, believe it or not, helped me a lot to get the anxiety off my chest...anything would make me cry...but we kept fighting and we kept finding peace and strength thru prayer and thru ALL the words of encouragement from ALL our loved ones!

Only God was indeed able to give us such strength and peace...

Here are some photos of the days preceding Luca's surgery:

Having fun and laughing my head off with an Elmo game at my Daddy's ipad...

With my sweet teacher Miss Mylene...or how I call her "Myeeene"... ;o) She's such a special person and she has tought me sooooo many things already...

Saying: "meeeeeeeee"... I wanted the camera to take some pictures...

With Mommy... finally looking at the camera and smiling...

Playing with Daddy and play-doh...one of my favorite things right now...

Eating some cookies...

Video of me learning my letters... I am getting pretty good at it! I know the sounds, not the names of the actual letters... ;o) But Mommy thinks it's VERY good for my age anyways... my parents are so proud of me! ;o)

All the stitches are out now! ;o)

This morning we woke up early and we headed back to CHLA for the 1st ck up after discharge and for them to remove the stitches from where the chest tubes were. Most of the surgical glue is also gone from the main incision now too...poor Luca, he's been itching his chest so much lately regardless of our efforts to stop him...but now the itching should stop since that dry glue is mostly gone...that really must have itched, I can imagine. Luca has really sensitive skin so now where the glue was it's really red but the actual incision looks pretty good and healing pretty well.

The nurse said that all looks good, no signs of infection or anything...we'll just keep an eye on his chest to make sure things stay that way. But we still cannot put any lotion, or sprays or nothing on it for a while...and we should cover up his chest from the direct sun for one year!

We also saw his cardiologist, Dr. Jackie again today...she is really happy to see Luca looking and doing so well...she wants to keep him on the Lasix for a couple more weeks to make sure no fluid builds up around the heart, etc...so 2 more weeks of the diuretic...yack, it's a struggle to give him the Lasix...we've been disguising it with food and M&M's but today he started gagging and vomited everything back up right after taking it...even his dinner... but it was my fault to give it to him a bit after dinner time...stupid me, I should have known better, Luca's always been like that with his meds... tomorrow we'll try again with an empty stomach...but 2 more weeks? Oh boy... I was hoping she was going to stop the Lasix today but I guess better safe than sorry...anything to protect our little Lulu! ;o) At least it's only one medication... I can't complain...

Overall it was a good feeling going back to that hospital with a different mind of relief now and a total light hearted spirit...we walked those hallways in such good moods today... our baby was safe, our baby was healthy, our baby was out of danger now...ahhhhhhhhh, we were feeling good!! ;o)

Now we only have to go back in a couple weeks for another echo, EKG, and ck up...

We just feel so sorry we still have to keep Luca in a bubble for another couple of months now... he cannot be in contact with sick people, we need to avoid crowded places, avoid being with other kids, etc...oh well, a couple more months are ok, we'll survive that too...but we are so ready for normal life back again that it's just hard to wait... We'll not even do a b-day party for Luca this year because it's better not to expose him to other kids... poor guy...but at least we'll do a cake and something special for him anyways...

We also got Gringo back today from the Pet Chalet Hotel... Luca was sooo happy to see him and kept hugging him all the time ;o) That's his best buddy...

Little by little everything is getting back to normal...the sensation that another huge train has passed over us again is starting to fade away....

I better go find something to eat now... I need that midnight snack, ya know...ehhehe... my hunger is getting stronger and stronger every day...eheheh

Beijos,

Helo

Another full day at home...

First of all today....HAPPY BIRTHDAY TIO KIKONES, YOU ARE THE BEST BROTHER, UNCLE, AND BROTHER-IN-LAW WE COULD EVER ASK FOR...WE LOVE YOU SO MUCH AND WE MISS YOU INCREDIBLY!!! :o) WE HOPE YOU HAVE ENJOYED YOUR SPECIAL DAY!!!

Here we are just finishing another full day at home...

Luca continues to recover really well and with such speed...today he was climbing up and down the couches with a lot more ease. He's been playing with his toys more and more as he did before the surgery, his energy level is going back to normal QUICK and he even started running a bit today....waiiiiiiiiiit Luca, you cannot run just yet...the difficult part is trying to make him to still slow down a bit...ehhehe...no, but he is still a lot more quiet than normal...of course, we are not even one week post-surgery yet...eheheh

The only thing that I can tell it's bothering him is the itching now...he keeps touching and trying to scratch his chest and I can tell he's trying to itch his scar. It's because the surgical glue is starting to peel off already and to dry up the edges so I can totally see why it's itching so much. I called the nurse today at the cardiothoracic department and she told me to put NOTHING on it...to just distract him and leave it...or if it gets realllllll bad I can give him a bit of Benadryl. We'll see, if I put some light pressure on his chest it seems to help him, nurse told us not to even rub it. I am also trying to keep him with an onesie at all times so he can't reach under his shirt and get to the scar...and I am constantly watching him and not letting him do it but it must be hard poor little man...

Other than that nothing else is happening with him...he's not in pain, his appetite is back to normal (they told us it would take a month, yeah right, with Luca? eheheheh), his activity level is going back to normal also, he's always in great spirits and even starting to do silly things and things he knows he's not allowed...but I still feel sorry for him going thru all this so I am letting things pass (for now!)... hopefully he's not going to get too spoiled by all this ;o) But then again, who cares, right, poor kid went thru so much that we can close our eyes to a lot of things for a while...

I still have a ton of laundry to do which I am not in the mood to start just yet, maybe tomorrow... now I am more worried about my 3hr glucose tolerance test on Monday... I've been watching my diet the best I can, no sugars, no carbs, no sodium, no this no that...no chocolate...Gosh, I love chocolate and that's been one of the few pregnancy "desires" that I've had so far but not even that I can have now...even thru the whole time at the hospital with all the anxiety I did not even eat one piece of chocolate, can you guys believe? Now THAT's a sacrifice...eheheh...but I am surviving... my first glucose test came back to be 150 and my doc told me that my limit was 140 so I was definitely above the norm...we'll see now, hopefully with less stress the #'s will also come down a bit, not sure if stress influenced it or not, I like to think it did...ehhehe!

Good night to all,

Helo ;o)

Thank you to our lovely hospital visitors...YOU GUYS ROCK! ;o)

We had so many very special people visit us while we were at the hospital...it's always so awesome to see beautiful familiar faces when we are in such turmoil in our lifes...everyone that came in with a big smile made us that much closer to home and that much closer to normal life...it was simply an incredible feeling to see you there... Even though we don't have family here you all made us feel like we are so loved and so important...we don't know what we would do without friends like you...You guys touched our hearts in so many ways that you would never-ever imagine...we will NEVER forget that.....THANK YOU-THANK YOU-THANK YOU!!!! YOU GUYS ALL HAVE HEARTS OF GOLD!!!!!

Thank you SO MUCH to our Sunday visitors too....sorry I never got to thank you guys individually here on the blog before like I did for the other days we were there, I had just writen a general thank you...but here it is officially now in order of arrival:

* BASIA SCHUTZ - Another outstanding and warrior heart mom....mother to Max, 2.5yr old, also Mr.Braveheart- Tetralogy of Fallot...You so understand EVERYTHING what we are/were going thru and can't thank you enough for your constant support always...Gosh, thank you soooo much for that DELICIOUS Thai food that you brought us and the magazines to distract me a little...you just knew what we needed! ;o) WE LOVE YOU!

* LIGIA & RICARDO APPARICIO - AND - ELVIRA & LIVIO AMATO - Ligia is my only true blood relative here...our grandmas were sisters, our fathers are 1st cousins and we are 2nd cousins...THANK YOU SO MUCH FOR EVERYTHING...You guys are so amazing, you came so many times this week and we could not have been happier to see you there with all your love...your hugs, support, comforting words, etc...your total devotion to us and little Luca meant sooooo much to us this week...Life sometimes twists and turns and it brings people so much closer together in ways that we would never have imagined! THANK YOU AND OBRIGADA also to your loving parents, Elvira & Livio who are here just visiting from Brazil but also managed to go see us and spend time with us and away from having fun in the sun in So. California...eheheh...Again, don't know how to thank you enough! WE LOVE YOU!!!! INFINITAMENTE OBRIGADA!!!!!!!

* SIMI BAL - Our dear new neighbor...we've known you for so little but it seems that we are already friends for a lifetime...You and your family are SO INCREDIBLY special and friends/neighbors like you don't come around that often...So we are keeping you guys inside our hearts forever...THANK YOU VERY VERY MUCH FOR GOING ALL THE WAY AND FOR TAKING TIME AWAY FROM YOUR OWN FAMILY AND VISITORS FROM OUT OF THE COUNTRY... We LOOOOOOVED the gorgeous vase with flowers you brought, it just made our standard hospital room look so beautiful and smell so nice and fresh...and Mr.L loves the toy you gave him too, that drill is almost out of battery already...eheheh...WE LOVE YOU GUYS!!!

* MELINA, BRUNO & GABRIEL COSTA - Our special Brazilian friends...we have also known you guys for such a short period of time but we feel that you are also part of our Brazilian family...it's amazing how sweet you guys are and how much help you were willing to supply to us during this time... Melina donated platelets to Luca and even offered to sleep over at the hospital while G and I would rest...now that's a proof of deep friendship too!!! Mel, I always love to also listen to your advices and health opinions...Melina is a hospital pediatric nurse in Brazil and it's always good to hear how things are done over there too ;o) THANK YOU GUYS SO MUCH FOR ALSO USING PART OF YOUR BEAUTIFUL SUNDAY TO COME OVER ALL THE WAY TO VISIT US...That meant a lot to us.... WE LOVE YOUUUUUU!!!! VALEU DE CORACAO!!!!!! ;o)

Like I said, all of you guys are golden hearted and people with amazing spirits!!!

THANK YOU- OBRIGADA- GRAZIE- GRACIAS- DANKE- MERCI.....

With enormous love,

The Santospirito Family ;o)

Oh home-sweet-home how much we love you...

So our first full day back at home was super...we all slept very well overnight in our own beds, with our own pillows and with our own comforts...Luca and I slept together since I am not ready to leave him alone to sleep just yet...it might take me a couple more months...I need to know he's right there next to me and doing fine ;o)

Then the rest of the day we relaxed, put the house back in order, I took a nice long nap with Luca, etc... We also talked with our families for a long time thru Skype so that they could see Luca and how well he is doing... Our parents could not believe...we still cannot believe how well he is doing in such a short period of time! If you don't see his scars you can't tell he went thru all this...well he's lost some weight too, approx 2kg but that's normal for what he went thru, good thing he had 2 extra kilos to give away for surgery...eheheh

Mr. Luca Giulio Cesare (this kid has so many nicknames now..eheheh) does not even complain of pain...all he does sometimes is some funny faces while trying to climb up the couch or very seldom he touches his chest and says "ai-ai-ai" that basically means "ouch-ouch-ouch" in Portuguese...it breaks my heart when he says that...but otherwise I don't think he's in pain, it does not seem to me that he is suffering with pain at least, but then again, he can take pain so well poor thing that he might not even show any signs... They told me to give him Tylenol with Codeine for pain but he fights me SO HARD and gets so agitated and upset to take his meds that if I don't totally see a need I try to avoid... his Lasix I don't have a choice but he can put up a fight like no other, closes his mouth so tight that nothing goes in...if I manage to squeeze some in he goes and spits it all out, etc...quite challenging...he's always been tough to take his meds...so with the Lasix I am mixing with some cereal and chocolate or something and make it into one spoonfull and he takes it that way...only like that...at least for now, hopefully by Friday when we go in to see his cardiologist and remove some stitches she'll tell us to stop with the Lasix too!

Anyways, this is it for today...quite easy going, boring and non-exciting...and that's what we like...B-O-R-I-N-G...hehehe...a boring life never looked so good again...ehehe...I remember having the same feeling after his 1st surgery...we've had our fair share of excitement for a whiiiiiiiiiiiile again! eheheh... now, next round of HAPPY excitement only in April when next pride and joy arrives into this home!

Good thing today is that his regular pediatrician actually gave us a courtesy call to see how Luca's surgery went and how he is doing...how nice, he picked up the phone and called himself...with last surgery I made SUCH a stink about it because NOBODY had the dignity to call us from their office to see how baby Luca was doing back then... I was soooo upset at the time and wrote them a nasty fax...eheheh... Don't mess with my offspring that I can become mean and aggressive...eheheh... I guess any mother would do the same... but come on, it was not simply an ingrown toe nail surgery, I had told him...it was MAJOR open heart, the least you can do is call your patient's family and ask how the baby was doing...anyways, he did it this time around...eheheh...gooooooood, I like that!!

Ok guys...good night to all...

Love,

Helo

And on the Fifth day.... WE CAME HOME!!!!!!! :o)

We still cannot believe we are home SOOOOOO soon...we were expecting to be at the hospital for 7-10 days and we leave in less than 4 days after surgery...now THAT is amazing!!! Kids are really so resilient ;o)

Gaetano had an ok night last night with Luca...first the poop incident, then Luca woke up screaming Mamma-Mamma-Mamma and it took Gaio quite a few minutes to come him down he told me...then they got a new room neighbor at midnight....also the nurses normally come to measure Luca's pressure and vitals every 4hrs and yet another nurse decided that she HAD to weigh Luca (who was sleeping) at around 6am and it could NOT wait...come on, that's pathetic...G was not too happy at all cause that nurse was not even too careful and started to grab Luca from under his arms and he started crying...WHAT? That's a total no-no after heart surgery, we can only scoop the kid never from under the arms for 2 months, we even made a complaint about that...crazy things, anyways...that was the only time that a nurse was not so careful, we never had that happen, normally everyone is so attentive, sweet and they always try to comfort the children and the parents in any way they can....and us parents can be sooooo demanding, trust me...the 6th floor at CHLA does not have a very great reputation because the nurses are always so busy (normally 1 nurse for every 4 patients) but we never had problems...maybe also because this time we bought them a big old tray of cheese cake so they loved us even more...ehehe....just kidding...we gotta treat well those that are caring for us with such devotion ;o)

I arrived there around 9 something today after I packed most of our stuff in the room and left everything ready for us to hit the road...I also did not have a very great night, I had some ligament pains again in my belly most all night and at times it was quite severe....baby is growing I guess...so that did not help my zzzzz either. That normally happens more when I am really tired...but this morning I already woke up feeling much better.

So I get there and things seem quiet...Luca was doing great, watching Madagascar 2 and had eaten a lot of his breakfast already with Daddy...Gaetano goes back to the hotel to rest a little and a few minutes later one of the main nurses comes in and tells me that we are REALLY going home today....yayyyyyyyyy.... I was soooooo thrilled...the x-rays looked good, doctors are really happy with Luca's recovery and everything else was perfect for us to take Luca home... I call G and tell him to stop his rest (poor guy) and to go ahead and finish packing everything, and to start cleaning the room and washing the towels (that's the only thing with Ronald McDonald House, we have to clean our own rooms before housekeeping goes in and we have to do our own laundry...no big deal given the amount of comfort they provide us!). So G had to do all that before we could actually go...

Around 12:30pm Gaetano comes back to pick us up and we are readyyyyyyyy to GOOOOOO..... boy what a sweet feeling that was!!!!! Luca got discharged, had normal clothes back on, and a huge smile on his face...he knew something nice was happening ;o) We did tooooooooo....no more major worries, no more anxious feelings, no more stress, no more sleepless nights, no more crying, no more seeing our baby suffering, no more sleeping separated... it's back to normal life finally again now... there is not a better feeling in life...

And as we were leaving we get a surprise visitor, Maria from the cardiology department, she works with Dr. Jackie and she is a sweetheart...she brought Luca a Toy Story gift of Woody and the horse Bullseye....his eyes sparkled and he said his classic: "ooooooh WOW"... Luca was a happy camper... ;o) THANK YOU SO MUCH MARIA, YOU SPOIL OUR LITTLE LUCA SO MUCH AND WE LOVE YOU.... THANKS FOR EVERYTHING YOU DO FOR US ALWAYS!!!!! ;O)

We hug our nice nurses goodbye and we take off out of there AS QUICKLY AS WE CAN!!!! No looking back...we never walked so fast...heehheh ;o) This time we don't even feel as nervous to take him home, we already know the after care, the recovery issues, the medications (he actually just went home on Lasix, nothing else!), the way to pick him up, the way to bathe him and dress him, etc...peace of cake! ;o) Just harder for me now since my belly is getting bigger and bigger but thank God Gaetano took 3 weeks off to help me in the beginning which is a bit harder...

We got into a lot of traffic and then FINALLY in Corona again...same feeling as last time...Corona looked so beautiful...our house looked so nice and comfy and clean (even though it's not, my cleaning lady comes in tomorrow...eheeh!)...but everything looked normal, like nothing ever happened, like the last 5 days never existed...the nightmare is over...now we are off to our dreams again...

Luca comes in the house walking and with a HUUUUUUUUUGE smile on his face with nice pink cheeks that was so incredibly cute....again, not a better sight in life...

He ate a good dinner, took a bath, normal PJ's, milk and is sleeping with Daddy... now I will take over and let Gaetano sleep a full night tonight! ;o) Back to our regular routine...

Thanks everyone for being so happy for Luca and for us....thanks for all the support!

BEIJOS, BACI, KISSES to all,

Helo ;o)

Fourth day also behind us now...

Very quick update as I am so tired... those 12hr shifts are killing me... I have sooooo much respect for all the nurses and doc's out there who do this on a daily basis ;o)

Our little warrior continues to do incredibly well...so much so that Gaetano now wants to change Luca's name to either Giulio Cesare or Attila...ahaha...now G's humor is also coming back, another good sign that our whole family is going back to normal ;o)

Another great day... Luca is eating much better...he walked around the hallways quite a few times today...the first time it seemed as if he was learning to walk again looking almost as if he had a few caipirinhas this morning...eheheh...but then he picked up speed and even started walking fast...that's my boy, as much as I hate when he runs today I was so happy he was picking up speed...eheheh...he was ready for life, not wanting us to hold him but we were so scared he would tip over and fall or something...eheheh

They also pulled his "pacer wires" out today which are actually 2 very thin wires...boy, is there anything else to pull out from this poor kid's chest?? It all seems endless...but now I think that's IT, except for the stitches in a few more days, I guess...But only where the 3 chest tubes were there are stitches, the main incision in the sternum has only surgical glue, high tech ;o)

And we had some BEAUTIFUL VISITORS here today again to see us too... I will thank each of you individually on the next post... You know who you are and WE LOVE YOU SOOO MUCH! ;o) YOU GUYS ARE SO SPECIAL AND DEAR TO OUR HEARTS!!!

All our neighbors left today, so Gaetano will probably sleep better there tonight...even though it's a 24/7 hospital and they can always get emergencies in the middle of the night, we'll see... When I left tonight Luca was already sleeping and as soon as I got to the hotel G tells me that Luca finally had his 1st bowel movement after surgery...wooooo hoooo, we are happy...and it was a pretty good sized one too, sorry guys, I know this is "too much information" but this is like my diary so I need to report e-v-e-r-y-t-h-i-n-g....eheheh ;o) We are actually glad for this nice poop...see the things we get happy about? Fun fun fun...

The greatest news is that it looks like we are really going home tomorrow... let's see how his chest x-rays look in the morning but the plan is for us to be out of there at 11am tomorrow...yesssssssssss, I cannot believe it's true yet, let's see what they tell us in the am.

I must rest now....poor "secondino" is such a good boy already and not complaining much here in my big belly...ehheeh... I think he's going to be an easy baby!! I hope...

Kisses on everyone's cheeks...and I don't get tired of thanking everyone enough for the prayers and good vibes ;o)

Love,

Lolo ;o)

The Third Day...

So the third day went also great... sorry I am only posting now, it's Sunday morning....yesterday, Saturday I got to the hotel and the wireless connections were not working and I was too tired to go to the computer lab to write here...

Anyways...yesterday I took my time in the morning and Gaetano woke up earlier and went to be with Luca who was still at the CTICU (cardiothoracic intensive care unit). Luca had done great overnight with only the nurses, he slept pretty well and then woke up around 4:30-5 am and was quietly watching tv on his own most of the morning...when we are there he yells and cries that we cannot leave his side but if he's alone with the nurses he's fine....hmmmmm...smart little guy ;o) Wants mommy and daddy's attention of course 24/7 when we are around...

Then at around 10am I got there and they were talking about moving him to the 6th floor where the regular rooms are...great news, that means he was doing so well that he could be moved already... At around 10:30am we got a VERY nice surprise visit from Tia Rana...my dear friend and another warrior heart mom ;o) She's mom to little Marcelo who is 3 yrs old and Luca's great pal...these 2 boys are such fighters and they have such love for life... and it's amazing to see them play and interact, they have more energy than all of us together...ehehe...AND they are heart kiddos! ;o) RANA, YOU ARE AN OUTSTANDING PERSON IN MANY-MANY-MANY WAYS...THANK YOU SOOOO MUCH FOR YOUR VISIT (and Ed's too!!), WE WERE SOOOO HAPPY TO SEE YOU HERE, too bad Luca was sleeping the whole time you were here...THANKS FOR HELPING WITH THE MOVE TO THE 6TH FLOOR AND FOR ALL THE GOODIES YOU BROUGHT ME AND MR.G....You always take such great care of us and you are my forever and favorite Nutritional Consultant...thanks also for the stuff for my leg cramps, I am sure they will go away now with that since I can't eat too many bananas anymore ;o)

Around 11am or so we were already in the new room on the 6th floor... now a room that we have to share with 2 other newborn babies and their families...at least we got a window bed for Luca where we can see life outside a little bit...oh, and we also got a wonderful hard as a rock couch for G to sleep on...ehheeh...

So I was begging nurses to let Luca sleep as long as they could...otherwise they come in every x minutes to bug him, etc...they still told me they HAD to do the "vitals" since he had just gotten in the new room and they NEEDED to do that...but luckily he was sleeping SO TIGHT and deep that nothing was waking him up...not even the move from 2nd floor to 6th floor woke him up, he slept thru the whole thing, he was reaaaaaally tired I guess...well, he had waken up at 5am! It was also a good chance for me to keep my feet up and rest a little more too while he zzzzzz....

Later in the afternoon then around 2:30 or so they told me they needed to wake him up to give him some more morphine because they were going to start the procedure to pull out the 3 drainage tubes from his chest... Ai ai ai...another time of suffering... So it went ok, but even with the morphine my poor baby cried a lot, yelled, kicked and screamed quite a bit and suffered... I was holding his arms, one nurse was holding his legs (he's strong!), the other one doing the procedure and Gaetano was touching his hair constantly and trying to calm him down...boy, what a site...they told us to sit down if we needed to...but no way, parents of warrior babies are warriors too, you know...ehheh...we can go thru this, we don't need to sit ;o) But it was difficult to say the least...yeah, the moms that tell me that they cannot see their kids getting shots don't have my sympathy, I am soooooo sorry ;o) Or the silly worries that we have sometimes in life means NOTHING when we are faced with situations like these...we totally stop and think about life and everything changes perspective...

After that shocking moment of removing chest tubes Luca settled and was in great spirits again...playing games on G's ipad, watching some movies, playing with a bunch of toys, he even ate a bunch of grapes (his favorite fruit right now), a cheese stick, drank some milk, apple juice, and a couple other things...they moved him to regular diet already too and his appetite is slowly coming back, that's a great sign too! He even sat down for a few minutes at a time, I think that still tires him out a little. They also started him on Lasix to get rid of any extra fluids left...

Then the rest of the day he was awake...he said "down-down" a couple times again wanting to get away from that bed...nurses said we can probably start to make him walk already too...WOW, already?? But I guess they know what they are saying...we'll try today, Sunday!

He fell asleep again around 8:30pm and I left around 9 to go back to the hotel to rest and eat... Gaetano stayed overnight with him and now I am getting ready to go there and see how the night went...well, I know it went pretty well since G already texted me early this am.

Oh, also nurses are even saying we might go home Mon or Tue...can you believe? I can't...but we'll see how things go until then....little by little he's recovering at an amazing speed, we are so pround of him, he's such a trooper and definitely a tough little guy ;o)

Have a great day everyone...I am off to another full day with my most precious thing in life ;o) It's hard work but for a mom and a dad it's nothing, we can keep going 24hrs if we had to, we just want to see our baby well, healthy, smiling, joking and going back to normal life again...any little smile we can get out of him just makes everything soooooo worth it!

Huge hugs to everyone... we love to know there's so many people reading this diary...thanks for taking the time! WE LOVE YOU!!!!!

Helo ;o)

Second day is also over...

So we had another FULLLLL day... a very good day but VERY busy... Luca woke up in the morning and was in good spirits and even wanting to play with his Toy Story characters... He kept asking for Woody and "Tato" which is Mr. Potato Head...he is in looooove with Potato Head lately...ehehe...he also managed to give me a 1/2 smile today during the time he was playing. I also started singing the ABC's to him since he loves letters so much now and he even started singing with me... GREAT SIGN of Luca getting back to normal!!

So overall the day went great...doctors were all very happy with the way things are going, Luca's progressing really well and reaaaaally quicky...This morning they took away his urine cath, the oxygen that he was on since last night and his arterial line. They will keep the 3 drainage chest tubes until tomorrow but they said his lungs are also looking really good without too much fluid left, they might have to start him on Lasix diuretic to assist with getting the lungs cleared.

The hard part today was that Luca was awake ALLLLLL day...he was not able to settle and take a nap, he was really close several times as he was tired but just refused to close his eyes...maybe too much going on, too much action or maybe he was simply afraid... AND he always wanted either Gaetano or I next to him at ALL times, we could not even go sit in the couch for a second that he would start crying...he wanted us there with our hands on him, touching his legs, talking to him and not leaving his side... I don't blame him, I would have done the same ;o) So it was a bit hard for me and Gaetano because we could not sit down, we took turns but still we got so tired of standing up next to Luca's bed alllllll day...they took most of the sedatives away cause they also wanna see how he starts reacting so it was a bit harder for the parents but nonetheless we are very happy to see him already going back to normal only 24hrs after surgery.

We have a wonderful room this time...it's an individual room with glass doors that separates him from the nurses which makes it very nice and private and very quiet...much better than last time when we were in one big room with 3 other babies with nurses all around talking and making noises all day/night. So we feel things are much better this time, Luca is recovering MUCH-MUCH faster and we know already how things go so experience in cases like these calms us down and make things seem a tiny little bit easier! ;o)

We received the wonderful visit of our great Greek friends Elina, Marios & Alexis Stamatelopoulos. ***THANK YOU GUYS SOOOOO MUCH FOR COMING....LUCA WAS SO HAPPY TO SEE YOU ELINA AND HE ABSOLUTELY LOOOOVES THE TOYS YOU GAVE HIM....THANK YOUUUUU!! I hope I spelled your last name right...eheheh...it's actually longer than ours...eheheh

Then this evening Luca started getting reaaaaaally tired from not sleeping all day and started getting really fussy, restless and unsettled...kicking, crying, trying to pull his lines, yelling "down-down-down" continuously and basically overtired and stressed...poor baby...but we asked for some more relaxation medicine because he NEEDED to sleep... I was able to somehow calm him down even before the medication and he FINALLY fell asleep around almost 10pm. We left the hospital around that time and now that I called the nurse at almost 11:30pm she said he has not moved one hair since we left... good boy, he needed the rest!

So we are back at the Ronald McDonald House to try to rest a little and get some sleep because I have a feeling that tomorrow will be a very similar day...

Good night to everyone...things are going so well that Gaetano and I are smiling from ear to ear...a tired smile but a very happy one...eheeh

Thanks again for all your support and prayers...we love to see everyone's messages....we feel so loved! ;o)

Night-night...love to all,

Heloisa

Getting ready for another day...

Hi guys,

Sorry last post was so hard to read...for some reason everything got connected together and all my spaces vanished, I was too tired last night to figure things out...

Last night Gaetano and I got at least 5-6hrs of sleep...we feel so much better and rested this morning. I called Luca's nurse twice over night and she always told us he was doing great. They are keeping him on low oxygen and all his numbers are still ok....the only concern right now is with his red blood cells, the count is a little low so he might need another transfusion today but they are watching things and still discussing it.

We are getting ready to be with him all day now since he is waking up more and more and we need to be next to him...they are still giving him some sedatives but lower doses now and the morphine is also still going for pain management.

Things are looking good...life is good...we are so proud of Luca!

Thanks for the prayers, messages and phone calls...we love you guys!

Kisses,

Helo

And the big day has arrived and now it's gone...

Hello Everyone,

Good evening, it's now 10:30pm and I have finally sat down a bit to update this blog... WHAT A DAY!!!!!!! Where do I start????

First, last night I was not able to sleep very well at all for obvious reasons...I was waking up every hour, tossing and turning...then at 4am I got a strange series of leg cramps on a muscle in my leg I never knew I had...ehheh...they would not go away...probably pregnancy related! Then I could not go back to sleep again and only took naps here and there until approx 7am...

By 7:30am Luca was up and wanted milk...he could not drink anything except clear liquids at that point so we gave him 8oz of apple juice and he drank it ALL...wow, what a treat apple juice right away early in the am, he never gets that...eheheh...he enjoyed it... We were trying to hide each and every food item that we had brought so that he would not ask to eat anything. He did great and did not even care to ask for food, maybe all that juice filled him up well...

So we got ready and left the hotel by 8:45am. By 9am we were back to surgery admitting where they took him in for a final check-up and got him into his hospital PJ's...after that we were directed to the surgery playroom where we had to wait for a while but Luca did not seem to mind since it's a nice room with all kinds of toys and play areas...he had fun...poor little guy, had no clue what was ahead of him!

Then we waited there for a long while, they got really delayed for some reason...he was called again around 11am and we took him to a surgery waiting area where they put him already into a bed and gave him a "happy pill" which in actuality was a liquid that apparently is so bitter that he managed to spit most of it out...but his stomach was so empty at this point that any little portion that he was able to swallow already gave him the "groggy" effect...he was so funny and drunk looking then, his eyes were half shut and he kept laughing and laughing at everything, totally easy going and mellow....so not Luca...eeheheh... So at this point the anesthesiologist doctor came to explain to us what the procedures of anesthesia were, risks, etc...very nice doctor with a confident and experienced yet sweet personality who told us that her son's name is Lucas and she was going to take great care of Luca as if he were her little Lucas ;o) That connection right there kinda touched my heart and it put me at great peace for some reason... So she asks us to follow her to the hallway where she finally asked us to try to say our goodbyes quickly....that's always the harrrrrrd part for me... Gaetano and I quickly kissed him and told him we loved him VERY much and the doctor took him in her arms then...they turned the corner so fast and in a flash we could no longer see him… So difficult…at that point I AGAIN could no longer hold it and started sobbing…Gaio did his fair share of crying at this point too and we hugged so tight for a long while! TOUGHHHHHH….

We went back downstairs to find waiting for us my wonderful cousin Ligia and her mom Elvira who is visiting from Brazil….what a blessing to have them both here with us today…we were able to talk, get distracted, eat and pass the time that way while Luca was in surgery…THANK YOU LIGIA AND ELVIRA SOOOO MUCH FOR COMING TO SUPPORT US TODAY…IT MEANT A LOT TO US!!! :o)

We also had the visit of Carolyn Spangler today who is another wonderful heart mom with a heart of gold herself, who taught and still teaches us sooooo much about heart kiddos….THANK YOU CAROLYN FOR YOUR VISIT AND FOR EVERYTHING YOU ALWAYS DO FOR US!!!

Our great guests stayed with us most of the day and provided me with some much needed girl/adult talk which was absolutely wonderful for me psychologically in so many ways…THANK YOU GIRLS! ;o)

At around 2:45pm Gaio tells me that Dr. Starnes (Luca’s surgeon) is in the hallways and we ran out there and we started talking to him asking how everything went…he had a nice smile on his face and said everything went great, he fixed what he had to fix, rerouted both veins to the correct side of the heart and Luca was doing wonderful…oh boy, at that moment he had just lifted 1000 pounds off our shoulders…I asked him if I could give him a hug (of course, I am Brazilian, we hug everyone…eheheh) and he was so nice and humble to say yes … another emotional moment for Gaio and I ;o)

Now at 3pm they tell us to wait at the hallways so we can quickly see him coming out of the OR before they take him into the CTICU…we did that and it was great for us to at least quickly get a glimpse of him and touch his hair for 2 seconds…the anesthesiologist doctor at this point also tells us that everything went great and that now it would take another 45min-1hr to get him settled at the ICU.

At 4pm we finally can go in and we stayed with him until 7pm…some very hard sights to see with him still sedated and intubated and with all kinds of tubes and lines coming and going from all directions… not easy at all…no kid should have to go thru this and no parent should have to see their kid suffer like this…horrible…

At around 7pm we went to get something to eat, when we came back to see him another doctor was there to already extubate him…great news…but so hard to watch because he started to wake up a bit, get a little restless and moving around a lot…he heard my voice and I think he got even more agitated because of that… I had to sit down and step away a bit from his hospital bed because it was too hard to see him suffer so much …his little arms are tied down to the bed so he can’t move much and that is also a terrible site…anyways…after that he got settled again, they gave him some more sedatives and morphine and he seemed to be calm and sleeping again… At 9pm we left him with his nurse to get some sleep ourselves, they told us to rest because tomorrow it’s going to be a full day away… and here we are trying to rest now…

I should get going… as usual I normally write too much…but this is also like a diary for me and it helps me to get things out ;o)

Thanks for ALLLLLLL the messages and prayers again…we are so blessed to be inundated with them coming from all of you…THANK YOU ALL SO MUCH…you guys don’t even imagine how much your love and support is helping us go thru this…

We’ll keep you posted… please keep your prayers for a speedy recovery now!

Love, kisses and hugs,

Helo ;o)

Here we are again at the Ronald McDonald House in L.A....

Hello dear Relatives and Friends,

One more "heart marathon" has just begun for us and especially for Luca...it has been a lonnnnng day and a lonnnnng week to be honest preparing everything for this day. Today we got to the hospital at around 10am and we went to surgery admitting and then to see the nurses for a check up and to answer 1 million questions. After that they sent us for blood work (where Luca cried a bit but at least the nurse found his vein on the 1st shot!). They had to take 3 vials and that blood did not seem to come out fast enough, poor thing. Lastly Gaetano took him in for chest x-rays and he did just fine.

Luca is very healthy right now...has not had a cold, flu, cough, vomiting or even runny nose in many many many months... well, part of it it's because we've been keeping him in a bubble away from sick kiddos and away from regular life basically... also we give him some wonderful supplements (Thanks to the tips of my great heart friend Rana!) that are totally boosting and helping his immunity! The nurses were very happy to see him so healthy... also he's 95cm tall and 15.3kg... ;o)

Overall we are veeeeeeery tired already and this is just the beginning....sigh...but we are actually quite calm (well, as calm as we can be given the circumstances) and very confident that everything will go just fine again tomorrow (13Jan2011). We have finally heard from the nurses around 3pm that we will need to be there at 9am (PST) and his surgery will start between 10:30am and 11am Pacific Time...and it should take a total of approx 3-4hrs from the time we leave him until the time he is ready and all connected at the CTICU (cardiothoracic intensive care unit). Tonight he cannot eat any solid foods passed midnight, only clear liquids until 8am (like apple juice or pedialyte) and after 8am NOTHING ELSE, not even water...poor little guy, I know he's going to wake up and start asking for milk right away...

Luckily we also got a room at the Ronald McDonald House which is a wonderfu place, all set up for children with game rooms, food, activities, etc...too bad Luca is only staying here tonight and then only Gaetano and I will come back the rest of the time. Everyone over here is also super nice, every guest is more or less on the same situation as we are, the whole facility is super clean and it's next door to the hospital...and they have a free shuttle too...can't get any better....We feel lucky... God has his hands over us ;o)

So this is it for now... Tomorrow I will try to update when I have some time again, not everywhere we can use a computer and/or cell phone at the hospital. Now I should get to bed since tomorrow is going to be TOUGHHHHHHH and so emotional!!!

Thanks for everyone's messages of love and hope... I am sorry I am not able to respond to everyone individually at this point...

Please keep us in your prayers...we totally need your support! ;o)

Love and hugs,

Helo ;o)

********** TRADUCAO RAPIDA EM PORTUGUES***********

Ola' meus queridos... aqui estamos indo bem, dentro do possivel e dentro dessa realidade louca q estamos passando mais uma vez...

Nao posso traduzir tudo q escrevi acima pois nao tenho energias suficientes...ehehe...so' queria dizer o horario da cirurgia amanha, 5a f dia 13 Jan 2011. Teremos q chegar la' as 9hr (horario aqui do Pacifico - 6hrs a menos q em Sao Paulo) e a cirurgia comeca entre 10:30 e 11hrs da manha. Tudo deve demorar umas 3-4hrs de qdo deixarmos ele com as enfermeiras ate' qdo ele ja' estiver no Intensivo ja' todo conectado, etc.

Estamos aqui no hotel Ronald McDonald House mais uma vez...eles sao otimos e temos mta sorte de poder ficar aqui novamente!

Luca esta' super saudavel e fortao como sempre....95cm de altura e 15.3kg... correu nos corredores do hospital hoje como louco... qta energia...eheheh

Entao e' isso...vou ficando por aqui pois tenho q ir dormir pois amanha sera' um dia DUUUUURO e bem LONNNNNGO tb... tentarei escrever amanha tb qdo puder e qdo der um tempinho.

Desculpe nao conseguir responder pra todos individualmente... SUPER obrigada por todas as mensagens lindas e tao carinhosas de todos...estamos sentindo o amor e as oracoes de todos aqui bem pertinho da gente!

Super beijo pra todos com mto amor,

Helo ;o)