We are HOME!!

I will post more when I get a chance, Alena needs me still quite a bit and its late tonight. But we just got home tonight!!

Tomarrow should...really.... be the day.... for real!

First off thanks to my parents for first of all having my dad come out and offer his help even though with the cancelled and rescheduled surgery he was unable to stay until her surgery date and for donating a bit of money to us to help with the extra expenses incurred by staying longer. I want to also thanks to the P family for their donation. 

Alena's rescheduled surgery is scheduled for tomorrow at 7:30 surgery start time. We are supposed to get to the hospital about "6-6:30" as the guy said (yeah couldn't be more specific I guess. We are planning on getting there at 6 just to be on the safe side. Such a early start time means that Alena is the first case of the day and should get a room (hopefully) and not have so much drama. It also means for us that she has more time to become stable before visiting hours (for Teague at least) are over. She has been telling us that she is scared of the "hurt" and "sad" but that she is ready to be all done. Oddly enough she seems quite ready and willing to get it over with, she's such an amazingly brave little human being!!


On the subject of the delay, I did talk to a social worker at the hospital on Friday and they said that they would cover the hotel expenses for us for the weekend (tremendously helpful). Tomorrow we are changing hotels to a cheaper hotel we have found as well as Alena's surgery. In a way it was nice to be able to be together as a whole, happy family for father's day and for my birthday (today) even though it meant being delayed. I hope everyone else had a wonderful Father's day yesterday (I know we had fun riding a train into San Fran for some fun.) I will more than likely post an update tomorrow at the end of the day but until then please feel free to add yourself to the Facebook group by the same name.

Update on Alena.... and the hospital...

So just after I posted this morning about today being the day it turns out that today is really not the day. I got a phone call from the hospital this morning saying that they had to cancel due to not having a bed available in the CVICU (cardio-vascular intensive care unit). They said that Dr. Hanley would still be able to do the surgery but that we would have to wait until Tuesday. The only good news in this is that she will be the first case on Tuesday, so there should be a room available. We talked to a social worker this morning as well who is going to make sure we are in a good number at the Ronald McDonald House as well. Supposedly the hospital is going to help us with accomodations but this extra four day stay is a unexpected expense and we are asking for any more help anyone can offer. We do have a Paypal link on the side of the page if you feel so inclined. Thank you so much for keeping Alena in your thoughts and minds throughout our ordeal and hopefully we will see Alena go in for surgery on Tuesday and come out surpassing all expectations (in a good way) that the doctors and surgeons have for her.


Mary

Today is the day!

So we have had a little but of fun this week. We went to the beach and rode a cable car which was nice to do before Alena's surgery. Yesterday we went to do our pre op testing at the hospital which included meeting dr Hanley and the PA and nurse assistant for the anesthesiologist. We also had a echo, EKG, chest X-rays, urine sample (I bet you can guess how fun that was), and blood work ( which Alena was so tired by then she just slept through it). Then we met with child life specialists who took us on the tour of the hospital be showed us all the facilities as well as giving Alena a medical doll to play with ( it comes with the electrodes nd IV, as well as pulse ox, chest tubes and a bandaid). Alena is scheduled for surgery at 12 noon today and says she is scared but ready to be all done. I think we all agree with her. My dad flew in this week also and is going to be a tremendous help to Teague in helping him be distracted. I want to close this by saying that unfortunately we found out we are going to be here longer then expected 7-10 days versus our expected 3-6 days. If you are willing/wanting to donate Marriott points or are willing to donate money via PayPal please feel free to do so. Also you may email me privately at Mary @ lynchco.net ( without the spaces). Thank you for all of your well wishes and positive thoughts for today.

Tomorrow we leave!

First of all thank you to the people who are continuing to show a their wonderful support of Alena in all ways (be it monetary or just happy wishes): to the B family, to the O and J family (heh... you know who you are!!), the K family, the H family and the J family (for your troubles;) ). Also thank you to Hissyfits consignment shop for just being plain awesome and getting so much money for our stuff! Altogether now including consignment shops, Craigslist sales, eBay sales, and straight up donations we have raised $2917.00 and wow... I'm really impressed. We also raised enough points through Marriott for us to be able to stay for 5 nights for free!!

Our only kink now is that apparently Stanford University has their graduation the day before Alena's scheduled surgery and hotel rates are skyrocketing because of this. Luckily we got the Marriott points to stay for five nights BUT we will still be spending the same amount of money on a hotel even though its for a shorter period of time. I also heard from the Ronald McDonald House associated with Stanford's Lucile Packard Children's Hospital and they are running at full capacity and do not see availability for us since they have so many long term patients. This is something we can overcome especially with the outstanding amount of money/points we have accumulated! Like I have said before feel free to continue to donate if you want to, any moneys we receive above the amount we need for our stay will be going towards a local charity for children with Congenital Heart Defects. Oh and hey, here's a little fact for you too: 1 in 150 children is born with some variation of a congenital heart defect.

So our flight leaves for Palo Alto tomorrow at 7.25 pm, we need to get to the airport at 5.30 and we need to leave the house by 4 to make that happen. We wont arrive in Oakland until 9.30 and then it will be another hour after we pick up the rental car and get situated. I think we should arrive at the hotel about 11:30 to midnight. That's a really long evening! We are really close to being fully packed and are going to finish up in the morning. Wish us luck in our travel day and I will keep everyone updated, I'm also going to try to take some pictures to share with you guys of the things we are doing with Alena and her hospital stay journey as well. Remember to join our Facebook group for more up to date information regarding Alena and her hospital stay.

Fundraising update.

Over the weekend we received a few donations, so let me thank those people first. Thank you to the T.S. and D.S. families as well as the B family for their donations to our trip!

We are leaving late late Sunday night and starting to get anxious about the trip... I wish it was just here already and we could get it over with but it will get here when it does.

We now have 92k points in the account for Alena's Marriott Reward account which will last us for 5 nights which is amazing!! Right now its looking like we will have to change hotels in the middle of our trip (Marriott is more expensive then some of the surrounding hotels but the points get us in for free) but that is OK!! More points are more than welcome though!! Find info here for donating your points: http://alenasbrokenheart.blogspot.com/2012/05/wanna-get-to-know-alena-and-find-new.html

We have also raised $2,431 which is amazing!! At this point I think we will have most of our expenses covered now!! If you still want to donate please feel free as it will only give us some more security for unexpected expenses that we may  incur since we don't exactly know how long we will be there, we will also be donating the excess moneys that we did not need to a local Congenital Heart Defect organization that helps out families in need during their time in the hospital. (I haven't decided which one, I will choose when/if we are done needing the donations for surgery and are back home again.)

Getting Closer!!

So sweet when she sleeps

So first I need to thank the beautiful people for their wonderful support of Alena so far, the Q family, the A family, the P family, the G family, and the K family! We appreciate everyone's support of Alena!!


So we are getting closer to Alena's surgery and to our goal! Our flight leaves late late late on the 10th, we wont get to our hotel until about 11:30 or midnight. Alena has a day or two to relax and get used to the climate (and make sure she didn't get sick on the airplane and yes we probably will look at a redwood or two, ya gotta have some sort of fun before the big day). Then she has a day to tour the hospital on the 13th and the 14th she has pre-op procedures (aka echocardiagram, x-rays of her chest and neck, labs, meeting Dr. Hanley (our surgeon)). They expect that to last most of the day and then Friday the 15th is our big day for the Heart surgery. We don't know what time it will start but I will keep everyone updated on that as well as everything else!


 Our goal is 3000 dollars to raise and we have raised $2,129 which is wonderful but it isn't quite there yet. We also have 52k points in the account (more promised but I'm not counting them till I can see them) to use at the hotel at 20k points per night. The Blog has now had over 1,000 page views which is wonderful!! I have a PayPal donate button located on the side of the page (not on your iPhone you have to go to the full desktop page view), if you would like to donate any amount of money even just 1 dollar would help us tremendously. If each person who has visited this page donated 1 dollar we'd get a lot closer to our goal, and if every person who visited this page blogged or linked or Facebook'd the page then we might actually meet our goal!! I will keep everyone updated on things as they progress, please consider donating 1/4 of your daily coffee to Alena's heart surgery trip (aka $1.00) and lets see how far we can get this.

Remember anything above and beyond our needs in CA is going to go towards one of the local funds for Heart conditions


A friend of ours Amanda has offered to make these cute little pillows for $10 for the first and $8 for any additional with $3 going towards Alena's fund (all of the profits). Here is her short blog post about it .

If your interested in purchasing one you can email Amanda HERE with letter, boy/girl/gender neutral and solid/theme and she will get back to you with fabric options. She expects turn around time to be 5 days for pick up (North Phoenix area)or 7 days to ship. Shipping is $3 per letter.

 

Thank you yet again for everyone's continued support!

2 weeks to go!

First of all thank you to the R family and the C family for their donations to help us get to Stanford for Alena's surgery!

We are now two weeks from our departure date and a little bit over that for Alena's surgery date. Of course the jitters have started in the Zupko household over this surgery and trip. Alena's teacher this year Mrs. B made her a wonderful little PECs book (picture system communication) to help her understand what is going on. Mrs. B has been Alena's teacher for three years in preschool and has done so much for her and we are going to miss her tremendously!!

I also made one with Teague in mind since it will be a lot for him to process as well.

We have now made it to 1900 dollars raised for Alena and our family is just so overwhelmed with the generosity of our friends (and some people we have just met). We have 1100 till our original goal. I can also see in our Marriott Rewards account that we have raised 52,000 points so far, this is enough points for two and a half nights stay for free saving us 208 dollars on our trip! If you have Marriot points to donate I would welcome them, Marriott has set up a special account for Alena's heart surgery trip and you can find more information here: http://alenasbrokenheart.blogspot.com/2012/05/wanna-get-to-know-alena-and-find-new.html

Please feel free to share this information with your friends and family! We have also set up a Facebook account for updates on Alena including updates about her surgery when the time comes so please feel free to join it as well. You can find that here: http://www.facebook.com/groups/217545245022169/

Thank you so much for being a part of our journey!!

A Thank you, Marriot points, and a favor to ask.

Of course I want to first thank the S family for their contribution of 200 dollars to Alena's Heart Fund! I have also sold a few things on Craigslist so now we are at 1805!! still 1195 to go but a lot closer!!

First of all I'd like to ask you all to join Alena's Facebook group on well... Facebook! Here is the link for that. You need to ask to join but I will approve you as soon as I see you and you will get reminders when Alena's blog is updated and faster updates when she is in the hospital as well. You can also keep track of Alena by following this blog with your own blogger account.

The second thing I'd like you to do is to post about the points fundraiser. Alena currently has 50k points and that will get us two nights at a hotel but we are hoping to get enough points for 14 nights. That's about 200,000 points. I'm asking you to post it to whatever you use to communicate on the Internet, post it to your Facebook, twitter, Google, email it to your friends or post it to your blog, however works for you! Basically you could post something like this (feel free to copy and paste) : The link for instructions is here.

If anyone has a Marriott's rewards account you can help out a friend of mine: Mary Zupko. Her daughter is having open heart surgery in California and is raising funds for travel and living expenses while there. They think they will be there for 2 weeks. They have set up a special account with Marriott and you can donate your points to her to help her get lodging for free using points. You can find details about how to donate your points to their family on their blog here:http://alenasbrokenheart.blogspot.com/2012/05/wanna-get-to-know-alena-and-find-new.html

Wanna get to know Alena and find a new way to help Alena?

Alena loves to read!

First of all thank you to the families who have donated through the paypal donate link on this page and thank you to the families donating items to be sold via craigslist or consignment.

I got a phone call from a friend today suggesting to me that I could open a Marriot Rewards account and people could "donate" their points to Alena's cause so we could use them for free hotel nights. The nights are 20,000 points per night but i'm sure with all the people who love Alena we can get there especially if you tell your friends as well. If you or someone you know stays at a hotel for business I bet they have a rewards account, if they do and its a marriot you can help Alena!!  You can donate your points to Alena by calling Andrea at 801-468-4000 ext 5857 and filing out a form in writing and sending it back to them, our personal rewards account number is 202188389. Please email Tom and let him know when you've donated points since he is trying to keep tally. The hotel is 20,000 points per night and we already have 27,000 points!! That's one nights stay for us!! A big thank you to the C and K family for helping to set this up for Alena.

I also thought you might like to get to know Alena so here's her Q&A

Alena's birthday is September 6, 2006 (She's 5.5 yrs old)

She has one brother who is 21 months and she adores him!

Alena's favorite color is pink or purple or sometimes blue.

Alena loves Hello Kitty, Olivia the pig, and Elmo.

 Alena's favorite activities include reading, pretend play with her baby dolls and running around with her brother.

Alena is currently finishing up preschool but will be a big girl in kindergarten next year.



If you have any other questions about Alena or our family please post them in the comments and I will answer them in a new post!!

Tickets! Auctions! Stuff for Sale!

Our one way tickets to Oakland/San Francisco! We drove out to Mesa airport saturday and stood in line for 1.5 hours so that we could get the best deal from this particular airline (allegiant). Although we stood in line for-ev-er i'm so glad we have them and am feeling much more safe and confident about our trip. I have booked our car and hotel as well and they are looking to be about what I estimated in an earlier post.


Deborah from "Mini Me Woolies" was able to raise 37.79 and is going to round it up to a nice even 40 dollars for Alena's trip. Thank you so much Deborah!!


I met with the W family over the weekend and our children played and had a blast at chick fil a. We need to get together again in the future *wink*. They were so gracious as to donate 200 dollars to Alena's fund!!


We also got together with the V family shortly to pick up some stuff to list on craigslist/ebay and they also gave us 44 dollars towards Alena's fundraiser. Thank you V family we really don't see you often enough!

I also want to thank my sister in law who has offered to make up Alena some hospital gown/shirt/pajamas so that she can wear her own clothing and not need to worry about her excema bothering her. 

Now I wanted to throw out my links to the things I have listed on ebay/craigslist! Please share with your friends and family and bid/buy to support Alena.

Fossil Handbag

Vera Bradley purse and matching wallet


NWT bridesmaids dress

NWT david's bridal bridesmaids dress

NWT Neiman Marcus dress 

Baby slings


Triple Stroller

NWT super nice women's slacks


Adult Hockey Equipment

Golf Bag with one Club


8 cup espresso maker

Kids Car Valet


Thanks for All of your support we are now at 1384 with 1616 to still raise!

Remember to join us on our facebook group, subscribe to the feed, and follow this blog to keep up with our hectic journey!

Auctions!! and another donation!

I know I have mentioned this but the auctions go live tomorrow night!! 

The lovely owner of "Mini Me Woolies", a part of "The Waldorf Dollhouse" congo on hyenacart has donated a doll shawl to be auctioned off starting friday. You can find the auctions here and here All the proceeds from the auctions are going to be donated as well as the proceeds from the pattern to create the doll shawl available by pdf download through Ravelry which is only 1.99 and very cute!! A big thank you for Deborah from Mini Me Woolies for her support of Alena and our family!!

We also received a donation in the mail today for 350.00 Thank you very much to the R family (i'm not sure if you want to be recognized if you do please message me and I will revise this)


So we now have 1100.00 and we need to raise 1900 to reach our goal!!

Remember any proceeds beyond what we need and use on our trip will be donated to a local charity for children with heart defects.

A auction fundraiser and a donation

The lovely owner of "Mini Me Woolies", a part of "The Waldorf Dollhouse" congo on hyenacart has donated a doll shawl to be auctioned off starting friday. You can find the auction here. The yarn used to create the shawl is even the awareness colors for Down syndrome!! All the proceeds from the auction are going to be donated as well as the proceeds from the pattern to create the doll shawl available by pdf download through Ravelry which is only 1.99 and very cute!!

I also want to share a small (but big) update: Today I received a 350.00 check in the mail from a lovely new friend who wishes to remain anonymous. We still want to thank you from the bottom of our hearts and hope you see this.

So with that donation our goal sits like this

3000.00 goal moneys

money raised:
350.00 anonymous check
400.00 from selling dirtbike

2250.00 left to raise

A good start and a estimate of how much we need!

We are excited can you tell? Today we sold the dirt bike ! YAY! We had an old Husaberg 500cc monster of a dirt bike sitting in our shed for about ten years and we decided to sell it to help with Alena's travel fees. Some of the money we made from it needs to go towards fixing up my husbands street bike so that we can save some money on gas when he drives it instead of the honking big blue whale of a truck to work. I figured out that my goal is around 2600 dollars for the trip and that is including most of the things we need. Like I have said if i make any  money above and beyond what we need for this trip we will be donating it to a local heart fund although I'm not sure which one yet.

Back to the point of the post all in all money to go towards Alena's travel expenses will be 400 dollars.... Not a bad start I think.


The breakdown of the needed funds (all approx amounts which change depending on circumstances):

• 440.00 Airplane tickets using Allegiant Airlines
• 120.00 fees for baggage
• 670.00 for Rental car from Alamo that we will all fit in (My dad is coming to help with Teague while     Alena is in the ICU)
• up to 1400.00 for hotel depending on when/if we get into the Ronald McDonald house and the length of Alena's stay (if she's in the hospital for more than a week it will be more)
• We will also need money for food although I am not counting that in my total since I have no clue how much we need.

So altogether  around 2630.00 not including food. We will aim for an even 3000.00 so we can have food expenses covered.

So since we already have 400.00 that would be 2600.00 to still raise.


I also started a group on Facebook for Alena called Alena's Broken Heart Club, please feel free to request to be added to it as I will more than likely be posting updates to that page more often.

A little bit of history and how we need your help.

Just giving everyone a little bit of history of our family.

    In December of 2005 George and I found out we were pregnant with Alena. We were not married and got married shortly after in February 2006, shortly after our wedding we had our normal 20 week ultrasound which showed that we were having a perfectly normal and beautiful baby girl. We were thrilled!

Alena shortly after birth

   Fast forward to September 6th 2006. Alena is born vaginally with minimal complications during a induced labor. Immediately the doctors took her off of my chest to the little baby box they always have available to give her some oxygen since she was very purple, her umbilical cord kept bleeding and was rather small. In general they were worried, a few minutes later our obgyn tells us that he thinks she has Down syndrome since she is showing some of the physical features associated with down syndrome. After the nurse harassed the doctors a little bit she got them to leave so that I could nurse Alena and bond for a little while with her. After this we were told she needed to be taken to the NICU for some normal testing.

Alena in the NICU at the hospital where she was born.

   We later found out that they were doing a echo of her heart without telling us. Needless to say the heart echo didn't come back well and we received a cardiologist at our room door instead of Alena coming back. He informed us that Alena had Tetralogy of Fallot and almost complete pulmonary artresia and that she would need to be care-flighted to phoenix children's hospital and have surgery fairly soon.(See this link for a explanation of tetralogy of fallot) 

   We got to Phoenix Children's hospital the next day after they discharged me and thus began our journey. Alena had a heart catheterization at three days old and her first heart surgery at one week old. She then had a emergency heart surgery right after the first heart surgery on the same day to fix a clot that had formed in the shunt they had placed and was cutting the oxygen saturation to her brain. Alena also developed a complication from the heart surgery called chyllothorax which is when the lymph nodes in the chest are damaged and fat leaks into the lungs resulting ultimately in drowning, which meant that she needed to be on a "fat free" diet. Babies don't grow well on this diet. One of Alena's lungs also collapsed during this visit and she needed to be re-intubated and put back onto the ventilator.

Alena on the ventilator approx 2 weeks old, its her first smile.

Alena's first day home.

After 8 weeks Alena was allowed to go home, unfortunately she didn't seem to be doing well at home so we took her to the pediatrician two days after she came home. She had gained two lbs in two days and needed to go back to the hospital immediately (this is water weight and the first sign of heart failure). We found out the problem was due to her lasix dosage( a diuretic) , they had been giving her a booster dosage at night in the hopes she would be able to be fine with the regular daily dosage but didn't adjust her daily dosage. Basically she wasn't shedding enough liquid and her heart was overwhelmed. She developed a tricuspid valve leak from this mistake. After the problem was solved we finally got to go home.

   Alena was on a NG tube for a while and we worked on getting her services like Speech and Occupational Therapies. We had doctors appointments every few days to check weight, heart function, wet and dirty diapers, ng tube placement and many other things.

She is such a smiley little girl.

   At five months Alena's cardiologist decided it was time to get another catheterization done to see if she needed another heart surgery. So we packed up and went to the hospital for another day to find out that she did indeed need her next heart surgery. At six months Alena had her next heart surgery to repair the hole in her heart and open up her pulmonary artery a bit more. The surgery seemed to go well but then she started to develop a problem breathing well and staying alert. They did a emergency cath to get a good look at her heart and discovered a "kink" in her left pulmonary artery that needed to be straightened out. So she went back into surgery and they fixed it the best they could. After another week in the hospital Alena was able to come home.



 Now it was the waiting game again, when will she need the next surgery. In the meantime Alena grew and although she developed a bit slower then her peers she was still a great joy to have around.

Right around Alena's second birthday we found out she had Eustacian tube dysfunction. Which means her eustachian tubes arent big enough to drain liquid out of her ear so her eardrum pulls back into the ear causeing her to have approx a 50 decibel hearing loss. She proceeded to have her adenoids shrunk and her first of three sets of tubes.

 At two and a half Alena didn't seem to be doing as well. She was getting more tired and was still struggling to learn how to walk. She would walk about eight steps and fall down in exhaustion so we talked to the cardiologist who did another catheterization to see how her heart was functioning. Although it was on the low side he said it wasn't acute enough to call for immediate surgery but since she was not doing well developmentally we decided to consult the surgeon who thought it was a good idea to go ahead with the surgery. It turns out it was a great idea, the day after surgery Alena was trying to walk laps around the nurses desk. I guess she felt better.

Since then Alena has grown, started preschool, learned how to use sign language, gone through several therapists and become an adorable little girl. Alena has also had her tonsils out , two more sets of tubes in her ears and two sedated MRIs.

  She also became a big sister in 2010 and loves her brother more than anything. They really have a bond like no other.

Alena is five and a half years old now and she needs her next surgery. This surgery is to repair her tricuspid valve and to replace her pulmonary valve. She has become gradually more tired, less physically active and has a harder time focusing on things.

Her cardiologist recommend this time rather than staying in Phoenix and having her surgery at PCH we travel to Stanford's children's hospital, the Lucille Packard Children's Hospital or Packards for short. The surgeon there is Dr Hanley and is supposed to be one of the top surgeons for children with complicated hearts.

 Alena's surgery is scheduled for the 15th of June and we have found out its pretty price to fly/stay/eat especially considering its in northern California. So this is what I'm asking... I'm getting ready to start some fundraisers locally and over the Internet doing raffles, auctions and maybe even a pizza party. Please contact me privately if you want to donate to Alena's cause. Any donations we receive that exceed our bills regarding our travel expenses will be donated to a local foundation that helps to support parents with children with heart conditions.