This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Tuesday, December 29, 2009

Best Christmas Ever.

Well, I couldn't have asked for a more perfect Christmas for my girls. Christmas Eve (Dec. 26) we read them "Twas The Night Before Christmas", and we laid out cookies and milk for Santa.

We tucked the girls in bed.... and I took pictures of 'visions of sugarplums dancing in their heads'. : )

Then Santa came!! He left a ton of presents for all 4 of us under the tree (which was previously completely void of presents).

  He ate the cookies and drank the milk too!!

Christmas morning (Dec 27), Scarlett was the first to wake up... after daddy of course.  I absolutely love this picture below, because when Scarlett woke up, she was sitting up in her crib with one binky in her mouth and 3 (count them, three!) more binky's in her hands. I always keep extra binky's in her crib so at night when she's crying and I can't see, I can just feel around for one and pop it right in. She loves her binkys, but this picture makes her look like a binky junky. ; )  [btw: her pjs say "Baby's First Christmas"]


Then finally, Violet woke up and the present opening began!

Violet asked Santa for only 1 thing this year. A flower. A red flower, "so she could smell it".  Santa brought her a beautiful long-stemmed rose (which you can see her holding in this picture and Scarlett is staring at it too).

Then they took turns opening presents.

Scarlett was so adorable opening up presents. She is such a little perfect little doll.

Violet was super excited to open every present each with the same amount of enthusiasm as the previous. After each present Violet unwrapped, she exclaimed "OPEN IT!! Open it!!" to daddy, because she immediately wanted to play with each and every one of her toys.   Daddy induldged her, of course (it's Christmas!)

Scarlett was just happy to be with her family.

Behold!! Crayons!!!

Scarlett was a lot more tame at present opening, but then again, Scarlett is a lot more tame at EVERYTHING compared to my little spitfire, Violet.

They got such cool and neat toys from their auntie Susan.  Scarlett got this super cool Tinkerbell chair that converts to a sleepingbag and pillow!

And Auntie Susan gave Violet this super cool Tinkerbell table and chairs!! Violet loves it!

A very special shout out goes to auntie Susan. She is such an amazing lady who adores Scarlett. She checks my blog regularly, prays for Scarlett regularly, brings special presents to Violet (who may feel left out at times) regularly, lights candles regularly, posts pictures of Scarlett on a "Scarlett wall" at work regularly, and is a total advocate and champion for my CHD baby. I am so thankful that God brought her in my life via Todd's work. Susan brought us bags (yes, bags) of presents for Violet, Scarlett and ME(!) for Christmas. She is a very generous and thoughtful person. Susan, thank you from the bottom of my heart. You are such a warm, caring, and special person. Thank you so much for making our Christmas extra special this year. Thank you for everything you've done for my family.

Okay, back to the Christmas blog, well, later that day/night Uncle Kevin and Aunt Kerri came over and brought the girls this really cool Art Easel. Todd and Kevin put it together that night.

Here is the finished product:

I couldn't have hoped for a more joyous and perfect Christmas for the girls. They had a blast opening up presents, eating breakfast that daddy made them (chorizo and eggs), playing with their new toys, and then hanging out with family later that day. It was a great day and I feel truly blessed. Thank you God, for all the blessings of the day. : )

Friday, December 25, 2009

Baby's First Christmas...sort of.

Merry Christmas! Although today is December 25th and technically Christmas, we didn't actually celebrate Christmas today. Todd had to work today and he has to work tomorrow too, therefore we're gonna celebrate (as a family) Christmas on Sunday, the 27th.

So, tomorrow night (the 26th), we're gonna put out cookies for Santa, read "Twas the Night Before Christmas" and do all the pre-Christmas traditional stuff for Violet and Scarlett. Then Sunday morning, we'll open presents like it was Christmas.

Today however, I took Scarlett and Violet to church for Christmas mass at St. Mary's Bascilica. It was such a lovely and beautiful celebration. Violet and Scarlett were able to join several other children in the processional, it was such an honor. They were each handed carnations to give to baby Jesus (in the manger scene they had on display in the church). All the children were dressed in their Christmas best (including S and V), and it was simply darling. I wish I had taken photos! : (

Then we got to sing Christmas carols with the choir and pipe organ (my absolute favorite!). Then the homily included the children again. We got to go up and sit at the alter while father Vincent told the children a story about candy canes, then he handed each child a candy cane. The whole mass was practically magical. A perfect xmas mass, I'm so glad I got to take Scarlett to mass for her first Christmas. We'll probably go again on Sunday after we open up presents.

After mass, we went to visit my uncle Ron where Scarlett tasted her first tamale. She loved it! (she is 1/2 Mexican, you know). I need to make some of my own, because she really seemed to enjoy it.

I took this picture of Scarlett standing on her own tonight. She pulled herself up on Violet's table, and proceeded to steal a wedge of grilled cheese (which she's eating in the top picture) which she nibbled on. I can't believe she'll probably be walking before her 1st birthday. She is doing so well. I am so grateful that I get tears in my eyes whenever I think about everything she's been through and how thankful I am to have her in my life. I will post more pics of our "real" Christmas on Sunday.  But for all intents and purposes MERRY CHRISTMAS!

Tuesday, December 22, 2009

Poor Weight Gain

I took Scarlett to the cardiologist today because of her poor weight gain. We were just there 2 weeks ago, and Beth said she wanted to see her in 2 weeks to see if she gained any weight. At our last visit, she weighed 14lbs 9oz. I was really hoping she passed the 15lb mark... but no such luck. :(

Today she weighed 14lbs 11oz. A measly 2 ounces is all she gained in 2 weeks. I immediately started crying. I have been trying to get her to gain weight. I've been fortifying my breastmilk with powder formula. I've been 'sneaking in' midnight feedings. I've been trying new foods (bananas, potatoes, rice, etc) on her, and it's not working. She's simply not drinking enough milk. :...(

Beth said that we need to give her less table food and more milk. She gave us some supplemental powder to add to her bottles to try to increase her carbohydrates. I really hope it works. If I go back in 2 weeks and she's only gained 2 ounces, I don't know what I'm going to do. Beth mentioned that if it gets bad enough we might have to consider putting the ng tube back in. :(  UGH!

BUT on the positive side, her heart looks and sounds great and she's not sick. Other than her weight gain, she's doing terrific health-wise and developmentally, she's right on track! Tonight she grabbed one of Violet's dolls (Cinderella), and was playing with it.

I hope our efforts at trying to increase her calories and carbs works. If you're reading this, say a little prayer that my skinny little baby gains some weight soon. Thanks!

Monday, December 21, 2009

Baby On The Go

Scarlett is really enjoying her new found talent of crawling all over the house. Once you put her down, she's off!  She likes crawling over to the refrigerator and pulling off the magnets and eating them. I posted pics of that earlier (last month).

I hardly ever put her in her walker, but I did today just for her to get a feel of what it's like to stand on he feet and be mobile. This was a cute pic I got.

I try to cook breakfast every Sunday for the girls. It is almost always eggs and potatoes. Last week, I made potatoes and gave some to Scarlett and she loved them!  I didn't take pics last week, so I made up for it today. She is very good at picking up finger foods with her fingers and then putting the food straight in her mouth. She likes Cheerios, Gerber Puffs, Cinnamon Life cereal, Nutragrain bars, banana, spanish rice, and mommy's breakfast potatoes.

She has a cardiologist appointment on Tuesday to check on her weight. I am really hoping and praying she's at the 15 pound mark. I've been trying to fatten her up for 2 weeks, because 2 weeks ago she was still 14lbs 9 oz.

Home update: I've been looking for the last 6 months and it's exhausting. I have 3 or 4 outstanding/pending offers. The latest one is off of 75th Ave & Glendale. I really hope I get this one. It's a bank-owned home right down the street from the elementary school, and I will already know one of my neighbors because she is my best friend's friend who lives 5 houses away from the house I put a bid on. There are 3 other bids on this house, but if I'm the highest bidder, then I get it. I'll find out this week hopefully and I will definitely post pics and updates if I get it. Keeping fingers tightly crossed!

Tuesday, December 15, 2009

Standing Up!

I saw Scarlett crawl over to the coffee table, then pull herself up to a standing position and stand there for a little while before she fell on ber little bottom. I was soooo impressed and happy. Up until tonight she's just been pulling herself to her knees, but tonight she entered a whole new phase in her development and I'm very very happy. : )

Monday, December 14, 2009

Regenerative Research

I wanted to share this awesome story that was on 60 minutes tonight.

It is about regenerative research and it gives me hope that someday scientists will be able to grow heart valves from stem cells. When Scarlett was born, I banked her cord blood which is rich in stem cells. This story really gives me hope for my daughter. Please support stem cell research.

Scarlett is doing so well. Her separation anxiety is lessening more and more each day. She's becoming more independent and showing an interest in playing with toys. Here is a pic of her playing with her piano.

She's also doing better at eating solid foods. On Saturday I made some breakfast potatoes and I put some on her high chair tray and she went to town and ate all of them! I really hope that she puts on some weight at her next doctor visit. Both the pediatrician and the cardiologist want to see her in two weeks because she only weighs 14 lbs 9 oz... which is pretty much what she weighed in August.  Her stay in the ICU really took it's toll on her growth and weight gain. : (

But hopefully she's getting back on track. Beth (Scarlett's cardiologist) changed her formula from Nutramigen to Gentlease. Of course she's still being fed expressed breastmilk, but I have to fortify my milk with formula in an effort to get her to gain weight. [that means I add a few scoops of formula to my milk]. I am determined to breastfeed for 1 year. Only for me, it's not literally breastfeeding, it's pumping and fortifying..and thickening. But Beth also wants to start to wean Scarlett off of the Simply Thick. So for the last few days I've been making my thickened bottles a little thinner. Which thereby will also increase her calorie intake (because the thickener takes away calories).  I'm really really hoping she gains some weight for her next appointment. I will probably bust out in tears if she's still at the 14 pound mark. : ( It's been five months already!

Thursday, December 10, 2009

2010 Heart Baby Calendar

It's been a while since I wrote that Scarlett had a photo shoot for a calendar of heart babies from Scarlett's cardiologist office (The Eller Congenital Heart Center at St. Joseph's Hospital). The calendars are supposed to be available next week. If you would like one, please send a check for $12.95 [per calendar] to: Eller Congenital Heart Center 500 W. Thomas Road, Suite 500. Phoenix, AZ 85013.  Include your name, email and telephone number with your check.

At this time, all calendar orders must be picked up at the Eller Congenital Heart Center (at the above address). If you live out of town, or if you are otherwise unable to go to the clinic to pick up your calendar... please send a note with your check that says "Melodie Mendivil will pick up". Then send me an email ( [with your shipping info] and let me know that I need to mail you your calendar.

Scarlett is featured in the month of June 2010. June was designated as "Tetralogy of Fallot" month. Tetralogy of Fallot is the most common congenital heart defect. The month of June had a beach theme and all the babies had on swimwear (as you can see from Scarlett's picture).

All proceeds from the calendar go to the Eller Congenital Heart Center to help support funding for research for congenital heart defects. Thank you for your support!

Friday, December 4, 2009

Goodbye Pulse-Ox and Oxygen Tank(s)!

Today while I was out APRIA stopped by my house (while my babysitter was home) and picked up the godforsaken pulse-oximeter machine as well as the huge oxygen tank and the portable oxygen tank (and some "spares" that were in the closet).

I wish I could have been there to take a picture, because it is a happy day in Scarlett's life!  She's been off of oxygen for weeks and I haven't used the pulse-ox in just as long, but they've been sitting around my house staring at me and reminding me of everything my poor little baby had to go through.

I remember one of my heartmom friends said that she wish they didn't cost so much so we can BURN the pulse-ox machine when we're done using them... like it should be a rite of passage for all heart babies. I couldn't agree more. I am so happy not to have to "plug her in" at night and call APRIA to order the foot probes and to play guessing games when the O2 levels go up and down from minute to minute or from second to second. What torture that was (for both of us!).

So, I am happy to say that Scarlett is OFFICIALLY oxygen free (meaning, it's not even in the house anymore) Woo Hoo! She is doing fantastic post-surgery.

Playing with her toys, crying at the top of her lungs, giggling when tickled, whining when  necessary (well, is it ever really necessary to whine?), crawling all over the house, pulling herself up on her knees, eating solid foods (including finger foods), and believe me, she has mommy and daddy wrapped around her little finger (and she knows it). 

We've even been able to take her out in public for the first time in 9 months! She went to lunch at Sweet Tomatoes, she went to church for grandpa's funeral, she's going to a park tomorrow for her cousin's birthday makes me want to cry to think that she's *finally* getting to live life like a normal baby. I never thought this day would come. I couldn't be happier for her.

She still has some major separation anxiety issues, and for the most part only wants to be held by mommy and daddy (meaning my sister, his sister, the babysitter, my mom, etc.. won't do at all when Todd or I am around... she only wants ~us~ to hold her), but that is such a small price to pay for a *healthy* and happy baby. It's hard to tell how much of it is us spoiling her, and how much of it is post-traumatic-stress-disorder related to her hospital stay in the ICU... either way, we hug her a little more, we kiss her a little more, we cuddle a little more and we definitely hold her a lot more than we probably would have if she was a little more independant (as a 'normal' 9-month-old).

Pulse-Ox is gone. Oxygen Tank(s) is gone. This is a momentous day for our family and it is a happy day for Scarlett. : )

Wednesday, December 2, 2009

Grandpa's Funeral

Today we say goodbye to Grandpa Fred. I wasn't planning on taking Scarlett and Violet, but I'm told that grandpa would have wanted them there. So we're taking both of them. Grandpa Fred lost his battle with ALS ("Lou Gerhig's Disease") after a 6 year fight.

I really feel like Scarlett and her grandpa were a kindred spirit since they both have medical ailments requiring a lot of the same equipment (feeding tubes, oxygen, ventilator, etc..). I am sad for my husband and his siblings for their loss, and I am sad for my girls. That they will never know him except for in pictures. Today is a sad day.