on the move

Not happy about walking!

HOME SOON!

a text from Mommy:
OMG! she'll probably come home 2morrow!! on some oxygen, but she'll come hm! She's mad @ me though :( she wont look @ me!

Day 1 winding down & doing Good!

This is Auntie Betsy posting for Ana! Angelina is a trooper! Although she was very restless during the day and a bit loopy she looked amazing!

She did well with her nurse so that was comforting. By tonight she is off all drips, drinking apple juice and watching Baby Signing Time!

Tomorrow is a big day for Angelina, Ana and the Nurses will be working with her to get her to walk! Please send your well wishes and prayers to them for strength and good health!

We love you Angelina!

Looking beautiful!

Auntie Sasa here. Baby girl is looking pretty fabulous. She is pink and her insision is very clean. I will try to post photos as soon as I can get to a computer. She has awoken and asks for Mama. I hope to get a minute to see her and take some camera phone pictures. Thank you for all of your prayers! X0X0, Auntie Sasa.

Doing Well

She's been off the bypass machine. Doing well, finishing up. Hoping to see her soon!

Surgery Started

Ok surgery started about 10 min ago. They took her back pretty fast after we got here.I was not ready for them to take her! :( She was nice and tipsy though so she went pretty willingly. Thank goodness for versed! Please keep those prayers coming!

Surgery Tomorrow

Hi Everyone, Auntie Sasa here. I am filling in as blog poster because the Adame's are internet deficient due to the move.

Angelina has been doing great, attempting to walk more and more. Lil Alex and Marcelina are getting used to the new house and enjoying their giant play room. Amidst all this change is surgery day. Angelina's surgery at . So please send all of your good thoughts and prayers out during this time. I will try to keep you posted from the hospital.
--S

Craziness

Still haven't found my camera! :( Not good especially since the pics I hadn't downloaded were suppose to go on Christmas cards!!! I suppose I will find it soon since we are in the middle of moving. Yes I said moving! Crazy yes I know. We had a good opportunity come up and we are going to be renting a house from a family friend of Alex's back from his junior high days. We rent a townhome in a really nice area right now, but with nice comes a high price. The house is much bigger, going from 1600 sq. ft to 2300 sq. feet and saving.....$800 a month!!!! And its in a very nice area. Its close to where we live now, so we are just going back and forth moving stuff. We just decided to move on Sunday, because they wanted to rent the house right away. We are having to break the lease here, we are hoping they will be lenient with us! It's amazing how things work, Alex happened to meet up with this friend from way back when at a job fair.

My hope is that we can be out of here by Sunday. Of course Alex worked this week, so its mostly been my sis Jessi and I going back and forth. Luckily Marcelina & Alex are visiting with their Nana & Grampi and playing in the snow. Meanwhile Angelina 's been following me back and forth and going to appointments in between.

So I'm sorry there was no cards, but I truly wish you all a very Merry Christmas!

All I've got is a few phone camera pics:

My little elf distracted with TV for just a few minutes! Yes thats a matress behind her- told you we were moving!

Enjoying some of Mommy's birthday chocolate.

Happy Holidays!

Thanks for the support!

First I wanted to say thank you for all the support that our family has gotten from our families and friends at home, from the wonderful nurses and friends I work with, and from our blogging families. One way or another you have provided us (mainly me) with hope, support, love and encouragement. Thank you from the bottom of my heart.

Seems like we've had lots going on lately. We had our annual trip to Big Bear last week, which was really nice. Of course the snow didn't really start until the Saturday right before we came back home, but the kids still had a great time. I have pictures that I'll post as soon as I find my camera! I love this trip because its the one time a year my family (parents & siblings) and Alex's parents and sister all get together and hang out for almost a week. Its beautiful and peaceful (well if you listen beyond the kids!) Last year we didn't go because we were still anxious about doing trips like that with Angelina. Alex and I worried about going this year because of our financial situation, but at the same time, wanted to give kids good quality family time before the chaos of Angelina's surgery starts. I'm glad we went.

Alex has still been looking for work, its been a tough quest. It has been alleviated at least temporarily as his old job has called saying they needed some help. Its temporary, not sure for how long, but its better than nothing. Having been unemployed for 2 months was tough, we were cutting it close before that, and this really put us behind. I will barely be going today to try to get some small gifts for the kids. Hopefully it won't be totally insane!

I was getting worried about being able to take time off from work for Angelina's surgery. I applied for a leave of absence and I just about flipped out when it was denied. Well it turns out that I don't qualify because I haven't been back to work for a year yet. After talking to Human Resources they informed me I might have one more option. I can apply for State FMLA and at least this way my benefits would be protected. Well thats definitely a good thing since I can obviously not do without health insurance! So as I was worried about what I was going to do for income, my unit at work took us under their wing. These caring Labor and Delivery nurses that I work with have started donating their paid time off to me. Wow, ladies you can't believe how grateful I am to you. There is this heaviness that keeps building up in my own heart with worries. Thank you for alleviating a part of that. Seriously, thank you sooooo much for helping not fall apart.

Ok so you may be wondering, HOW IS ANGELINA DOING? She's good! Spunky as ever. Making more and more attempts to walk. Attempting to talk more and more- although we can't always understand her. We are seeing a new Speech Therapist, who just seems wonderful. When I had to take inventory of words she knows, I was surprised that she says 8 words and signs about 30 different words! She has been free of colds up until now. I'm a bit worried because Alex & Marcelina started with the sniffles and a cough 2 days ago! We will do our best to keep her healthy.

Thanks for checking on us!

Three more weeks!

It is exactly 3 weeks until Angelina's Fontan surgery. Yes my anxiety is slowly starting to creep up. Thoughts like what will she think, what will she feel when she first wakes up from surgery? Betrayal? Obviously pain, but will she look at me and wonder why I let this happen? Will that pain show straight through her eyes? How will she do? I can't even picture her intubated at this point. She's my happy little girl, who loves to get all riled up and crazy. Will she look at me like I'm crazy when we first try to get her to walk post operatively? How I wish I could take all this burden and pain upon myself.

I do try to think positive, I don't think about it going wrong. I just worry about how tough it will be on her. She's so unsuspecting. She's busy trying to walk to me whenever she can. She's chunked up, weighing 22 whole pounds and measuring 30 inches! She's eating well, but just to make sure she has enough reserve for her surgery, we started giving her GT boluses at night per her GI doc.

She's trying to talk more. She actually tries to say Marcelina! And of course she's doing good with her signing.

We went to the Craniofacial clinic yesterday. I always find those appointments to be a bit...annoying? I like the staff, I know they mean well and are only trying to help. But I leave feeling like, why did I just come pay $20 so you can tell me she's delayed? Honestly, pay me $20 and I can tell you she is behind....but she has also come a long way. She's smart and happy, loving and playful. They do acknowledge she's making progress. Yet part of me finds it pointless to sit there and wait 2 hours to be seen and then have her evaluated once she's tired & fussy. I wish there was a different way of doing these evaluations.

Here she is cracking up while her brother tries to keep her entertained at the doctors office

Silly brother with Angelina's pants on his head pretending to be a puppy for Angelina.

Thanks for checking in on us. Have a Happy Tuesday!

A nice Thanksgiving

Hope you all a had a great Thanksgiving. We had such a nice dinner thanks to Auntie Sa-sa. She made a beautiful and yummy turkey! We ate lots, then passed out....seriously, then had dessert. It was yummy and relaxing.

Our blessings:Is it ready yet Auntie Sa-sa?Time to eat!

Hanging out with Nana

The Adame Girls

Marcelina's Birthday

I must back track a few days and tell you Marcelina my oldest had a birthday. She turned 7 on November 25th. I must say her birthday was a bit more memorable in that I started having labor pains the day of Thanksgiving. I wasn't due until December 20th- a day after my birthday! Anyhow I did a lot good breathing because there was no way I was going to miss Thanksgiving dinner! I remember they were intense at times bringing tears to my eyes. But after dinner...the pains subsided! By the time I did go into the hospital that Sunday I was dilated to 9! Needless to say, I had her soon after.So here we are 7 years later, Marcelina has turned out to be my girly girl, smart, outgoing, loves to dance and sing. She use to want to be a nurse, a teacher and a policewoman. Now she wants to be a Rock Star! Thanks Hannah Montana! Well she has a few years to outgrow this! For now she can have fun dressing up!For the first time in her 7 years we did not have a birthday party for her. We had to keep it low-budget, which honestly is hard for me. We did manage to do stuff she loved though. We took her to Disneyland (thanks Nana & Grandpi for those annual passports!) We split up for a little bit. Daddy and Alex hung out at Disney while us girls hung out. Marcelina got dolled up at Club Libby Lu in Downtown Disney. Trust me she was in girly-girl heaven! She's funny she's missing 3 teeth right now, and is unsure of how to smile at this point. Then we all got back together and enjoyed our day at Disneyland. Initially Marcelina wasn't being very nice to her brother, because she wanted to do her girly-girl thing, but the by the end of the night they were best buddies again.

Getting Dolled up @ Club Libby Lu

Happy Thanksgiving

Our family would like to wish all of you a very Happy Thanksgiving! We have so much to be grateful for. Our health, our family and friends. Thank you to all of you who have been so loving and supportive. Mostly we are grateful to HIM for all the blessings he has given us, and for helping me stay strong!
I'd also like to say a little thank you to my blogging family....you help me stay sane.

XOXOXOs
The Adame Family

She's a Maniac, Maniac!

Here is our little girl paying homage to Flashdance!



As u can see she is pretty active. The laughter in the background is her partner in crime Aunti Jesse!

Our little model

Angelina was enjoying a little photo shoot tonight...

Peek a boo!

She didn't even mind the hat!

Don't you love her cute little pants? How lucky is she to get custom longie pants made! We are getting ready for cold days (hopefully soon!) These wool knitted pants are suppose to work perfect with her cloth diaper. Angelina is just little Ms. Thing! She doesn't wear disposable diapers because she's allergic to them. So she gets to wear soft, cute cloth diapers AND gets pants made just for her! Thanks Terri, you have been so wonderful to make these for Angelina!

Finally this is my favorite part of the night...quiet time! When everyone is in bed, even if they are pretending to be asleep!

So Close!

She's almost there! She's definitely trying! We are well. Lil Alex got a little sick with a cough & congestion. It's almost gone, but he did manage to give Angelina the sniffles. So far its not bad at all. Thanks for checking in on us!

Cracking up

I just love the way she laughs, its so carefree!

Still working on the walking. She's 20 months now, it would be nice to have her running around for her 2nd birthday. Amazingly we are staying cootie free....I'm praying we all stay that way!

56 more days.......

Happy Halloween

Check out our costumes!

All set to go Trick or Treating! Look at brother being sweet and loving...big sis is not amused by it!

Lets try out some super hero moves!

Enjoying some Halloween candy. Hope you all had a Happy Halloween!

Cute Longies!

Aren't these the cutest knitted pants (Longies)? Thanks Terri for you hard work! They seem so comfy.

I'm a little tired....

But not too tired to talk on the phone.

Mommy it's for you!

Before you get excited, no she's not standing on her own. She does it for a few seconds and then leans back on the couch. But she's trying!

Alex had fun today working on his Mr. Potato Head Pumpkin. He's so serious about his work.

Very Serious!

The finished Product!

Marcelina thought she'd just be goofy for the camera!

So we saw Dr. Bailey today. He is Angelina's CT surgeon. Not only is he well known in his field (performed Baby Fae's baboon heart transplant 26 years ago yesterday) but he must be one of the kindest surgeons I know. He never down plays my questions, he gives me the honest truth without sugar-coating it. Yet I feel reassured by him. I've heard nurses say that no matter how well or how much he does and succeeds, he doesn't take credit for it. Instead he is thankful that his hands are tools for HIM. He is humble through it all and gives all credit to the Lord.
He is never rushed when he sees us. He always has a special twinkle in his eyes. He manages to sweet talk Angelina, reassure me, and chat with little Alex. I am so greatful that we have him.
Like I had mentioned before, our date is set for December 30th. Angelina is sooooo close to walking. She wants us to hold her hands and walk her everywhere. Once you get her started you can't get her to sit down. I am so proud of her.
I am almost afraid to say we are staying healthy right now. We've all gotten our flu shots and Angelina's started her synergis shots. Little Alex has been fighting a cold, he's such a trooper, he swears he's not sick.
My last bit of news is bad. My hubby got laid off a little over a week and a half ago. We are trying to stay positive. So while he looks for something new, I will be picking up extra shifts at work. Thank goodness there's overtime available at work. It does bum me out though. 1st because the economy is so bad right now, that I do hope he finds something soon. 2nd, I don't want to be too tired for my babies. We have our routine, and while I may complain about the running around...it's what I do. I'm the Mommy, I take care of my monsters.
So thanks for checking in on us.... and keep us in your prayers.

Cruising around....almost there!

Angelina is all over the place! She gets brave and tries to stand by herself. Can't wait for those first unassisted steps! By they way our surgery date is December 30th.

Making Mommy laugh!

So glad my babies can give me a good chuckle!

Mommy's Corner

Since this blog is mostly about Angelina, VCFS & CHD, I've started a new one. You know just about everyday mommy stuff! So please visit when you can! Yes I will be bragging (and possibly venting) more about my 2 other monsters!

Feeling so much better!

I think Angelina is finally feeling 100% herself again. She is playful, and flashing her silly smile all the time. I noticed she was still getting a little bit flushed Wednesday night, but that was the last of it! Hope you all have a wonderful weekend!

Just got home today...

Yes today not yesterday like was planned. The heart cath went well, her pressures were good and she's ready for her Fontan. As usual she came out very agitated from the anesthesia. So it was a bit difficult to keep her flat and calm. After a while she did calm down and we both fell asleep.

Waiting in the lobby to get called in.

Ok we are on the gurney!

Let me double check these consents!

So after our nap, I notice Angelina's face is starting to get flushed, she's feeling warm and she's getting agitated again. Her temperature was ok but her face started to get more beet red and she's more upset. By this point she is so upset that now she's turning blue and her sats start dropping. And you know that the last thing an agitated baby wants is a oxygen mask on. And if this wasn't enough her face starts really puffing up! Her poor eyes puffed up and for some reason her left side is worse than her right. So both the anesthesiologist and the cardiologist get called back to her bedside. By this time the redness spreads to her arms and her left leg. She was cath'd in her right groin and her right foot which was previously warm is now cool. Am I worried? Just a bit!!!
Its decided it has nothing to do with her circulation and its probably an allergic reaction to something. Her lungs sound clear and the chest Xray looks good. So finally a while after getting some steroids and benadryl she goes to sleep and the redness starts to fade. And now she's bought herself an overnight stay.

The puffiness has gone way down in the above pictures and she's not red anymore. As you can tell she is NOT a happy camper!

The pictures below were from this morning. She was feeling better and ready for breakfast.

She had one more episode last night of getting flushed, sounding raspy and getting agitated. They gave her benadryl and it seemed to help. Luckily they let us go home. She occasionally sounds raspy but I think its also from being intubated. We'll keep giving her benadryl for tonight and hope she is even better tomorrow. At least her appetite is good and she did flash a few smiles at the doctors and nurses.
So now the next step is to see an Allergist. She's very sensitive to things, so I am interested in seeing this specialist.
Thanks for checking on us!