More Stressful Days

Scarlett's grandpa (my father-in-law) lost his battle with ALS [aka Lou Gehrig's disease] this past Saturday leaving both of my girls grandpa-less. It's been a hectic and stressful week. Todd spend the last 5 days at his father's deathbed and for all intents and purposes I was a single mother for those days. Watching my cardiac baby and my temperamental 2-year-old 24 hours a day all by myself... and wouldn't you know it BOTH of them were *starving* for attention.

Scarlett would scream her little lungs off if I put her down, so I constantly had to hold her, then Violet was extra super clingy and had several meltdowns during those 5 days. I could feel myself going gray by the minute and can understand why some people drink. I love love love my girls, but it was very difficult being a single mother. I don't know how those women do it. I suppose when you add in the exclusive pumping, and the fact that during those 5 days Scarlett woke up 5-6 times during the night (thereby surviving on sleep consisting of 45 minute spurts).

We (me and the girls) went over to my sister's house for Thanksgiving and spent the night on Wednesday and Thursday night. You would think I'd have help from my sister, but alas... my girls wanted one person and one person only... Mommy. (and daddy of course, but he was unavailable).  It was a very trying time.

I am very sad for Todd. He is taking his father's passing very hard. I admit I am overwhelmed with feelings of guilt and depression that I didn't think I'd experience since he wasn't my biological father, but it is sad that he is gone, and that he had to suffer as much as he did. :(

Now that Todd is back home, Scarlett is very happy. She's a crawling expert. She crawls all over the place. She's teething (big time) and likes to bite her pacifier and her frozen chew toys. I can't believe that it's been 7 weeks since her heart surgery. She is doing so much better.

Today I called Apria and waited on hold for forever, that I finally hung up. I needed to call them to come and pick up the oxygen tank and the pulse-ox machine!! (woo hoo) because no longer needs them! Yay!

I took the girls to get their picture taken for Christmas, but at the same time I also wanted to get Scarlett's pics taken showing her most recent scar. I think they came out pretty good.

I wanted her to have professional photographs for her so that when she's older, she can know what she went through and I can remember what I went through watching her.  The came out really good.

You can see her 2 bottom teeth in this one

This one is my favorite :)

Picture With The President

I received a phone call from the Eller Congenital Heart Center yesterday saying that the marketing people from St. Joseph's Hospital wanted them to pick a family to take their picture with the President of St. Joseph's named Laura Hall, and they chose me! I felt really honored, how could I say no?

So this morning, I took Scarlett in her "Sunday Best" to go take a picture with the President. She was photographed with two other patients. One was a woman who had recently had a lung transplant, and the other was a man who had a valve replacement heart surgery. Scarlett was representing the Eller Congenital Heart Center. I am so proud.

The picture(s) will likely be used in hospital pamphlets and definitely in a magazine called "Ranking Arizona"... which chose St. Joseph's Hospital as #1 Hospital... or "Best" hospital. = )

So my 9-month old baby is already:
1.) A model for Snuggin Go
2.) In the 2010 Eller Congenital Heart Center  calendar
3.) On the news for the CHIEF Graduation
4.) In a picture with the President of St. Joseph's Hospital

Oh, and of course has quite a following on her blog ; )   She's really making a name for herself! :)

Grandpa

Tonight I took Violet and Scarlett to see their paternal grandpa. He is not doing so well. In fact, he is very very sick, and his doctors/caregivers do not think he will survive much longer. Todd took them (V&S)yesterday to visit him, but I was at work and I didn't get to see him, so tonight I took the girls to see him.

Todd put Scarlett in grandpa's arms (maybe for the last time) and I'm sure that grandpa could feel her and I hope that he was happy holding her [he is very weak and unresponsive]. My heart was breaking. My dad died when I was young, so my father-in-law is the only grandpa my girls ever knew and will ever know. It makes me very sad for my girls that they will grow up without their grandpa. Especially Scarlett. She'll never know how much he loved her. She'll never know what a sacrifice he made to be there for her during her surgery last month. She'll never know him. She'll only know stories I tell her.

I can tell her that I was so touched that he came down to St. Joseph's Hospital to show his love and support for her during her surgery last month.  I can tell her what it meant to me and what a sacrifice it was for him to be there for her. It showed how much he loves his son and granddaughter.

Scarlett will always know that her grandpa loves her. I know that we will all be reunited someday, but for now, I am sad that he is suffering and he is fading. : ( 

Appearances Can Be Deceiving

People always tell me: “You can’t even tell she’s had surgery”… or “She looks so great, you can’t even tell”…. Or “She looks just like a ‘normal’ baby”. I get comments like this all the time.

I have pictures of Scarlett posted all over my cube at work, so basically anyone who passes by my desk can see her. Also, by now, everyone at my work (300+ employees) knows about Scarlett’s heart condition because I mentioned it in an open forum during 'employee recognition'…(well, I had someone read what I wrote the day of Scarlett’s surgery). So, it often happens that people stop by my cube look at her picture(s) and say: “She looks great/normal/healthy, etc.”

I never really know how to take this. How should a CHD baby look? Obviously CHD babies on oxygen or feeding tubes physically look different, but what are these people expecting? Blue babies? Pale, sickly looking babies? It makes me wonder…Would I say something like that to a heartmom if I wasn’t a heartmom myself?? Then I think, yeah, I probably would. I don’t take offense, but I don’t know what to say… so I just say “yeah, she’s doing amazing, I’m really lucky”.

I always make sure to say “I’m one of the lucky ones”, because I think of the moms of babies who are no longer with us [all the Heart Friends labeled “Angel” on the right side of my blog]. But despite Scarlett ~looking~ fantastic…she’s been through hell and back, and all I can say is looks can be deceiving.

Along those aspects, let’s talk about the façade that I put up on a daily basis. Everyday, I get up, I get dressed, I go to work, I seemingly function and get my job done, I come home, take care of my babies, I pump, I Facebook, I blog, I email… just like a “normal” mother. But looks can be deceiving. . . I am not okay. I am not strong. I am an emotional wreck inside.

This past Friday at Scarlett’s 9-month pediatrician appointment, the doctor walked in to the exam room and said “Hi mom!”, and I said “Hi”, and she said “So, miss Scarlet just had her surgery, how is she doing?”, and I said “Great”, and she said “How are u holding up, mom?..how are you balancing work, home, hospital and everything?”….then from out of nowhere, I got a huge lump in my throat and I was choking back tears. I said “I don’t know… I’m sorry, I think I’m gonna cry”…and the doctor said “Oh no!, why?”, and I said (with tears streaming down my cheeks): “Because I honestly don’t know how I do it… it’s very stressful… and it’s HARD”. I may appear to be strong, but I'm a weak, fragile, sensitive little sissy.

I am definitely not as strong as people think I am. I fall to pieces at the drop of a hat (whatever that means). Inside, I am an emotional wreck. Outside, I can keep it together pretty well. I can crack jokes, I can smile, I can cook, clean, work, and schedule all of Scarlett’s appointments. I can refill her prescriptions, pump my breastmilk, make her fortified/thickened bottles, update my blog, attend Eller Heart Family Council meetings…but when it comes to my emotional health, I’m a walking time-bomb. Ready to detonate at simple questions like “How are you holding up?”. For this reason, I’ve made the decision to get myself into some therapy. I don’t need ‘happy pills’ as my sister calls them, but I could probably benefit from talking to a professional about my emotional instability. Or maybe this is all a normal part of being a heartmom? I guess I’ll find out.

For now, I'll just say that when you look at Scarlett, or when you look at me.... appearances can be deceiving.

Circle Of Life

I had posted back in September that Scarlett's only living grandpa (Todd's dad) was in the ICU for complications from his condition Amyotrophic Lateral Schlerosis [ALS]. At that time, he was able to make a recovery and was discharged home. A few weeks later, he was even able to make it to St. Joseph's Hospital waiting room during Scarlett's surgery (which I also posted about).

I was deeply humbled that Scarlett's grandpa asked to come to the waiting room during Scarlett's surgery especially because he wasn't even able to see her, he just wanted to be there to support his granddaughter and his son. I should mention that it is a major effort for him to be loaded into the car (he is on a ventilator, trache, a fairly large and cumbersome motorized wheelchair), and taken anywhere.

Well, he was doing stable the month of October (as stable as can be expected in the late stages of ALS), but unfortunately he recently took a major turn for the worse. He developed an infection and was hospitalized earlier this month. The doctors were unable to treat his infection. He spent a few weeks in the ICU, and very recently he was discharged on Hospice care. : (

So, while his granddaughter Scarlett is thriving and beating the odds of survival for her medical condition, he is slowly deteriorating and in the final days of his life because of his medical condition. It's the circle of life. Very sad. I lost my own father 21 years ago, so when Todd's father passes, it will mean that Scarlett will grow up without a grandpa. : ( As anyone would imagine, Todd is extremely upset, and has been spending a lot of time at his dad's bedside. If you're reading this please say a prayer for Todd and his siblings who are suffering right now watching their dad fade before their very eyes. : (

Arizona Republic Article

I was contacted last week by a reporter from the Arizona Republic (the local Phoenix Metropolitan area newspaper). She had written a article about a local 4-year-old girl [Gabriella Vega] who needs a heart transplant. During the reporter's research, she happened upon my blog.

The mother of Gabriella keeps a blog and the reporter was reading it and clicking around. So, through a link of a link of a link came across Scarlett's blog (totally amazing!). The reporter sent me an email asking if she could interview me for an article that she's writing about blogs that moms of ill children keep/write/maintain.

We spoke on the phone on Thursday and asked me questions like: why do I blog, who reads my blogs, do I like to write, when/why did I start my blog, what's wrong with Scarlett, how long have I known about Scarlett's CHD, and other things like that. I was kind of nervous (I know...me, the total HAM, nervous?)..because this article is going to published in the paper and I just felt like I was going to sound like an idiot.

Anyway, she asked me if there were any other heartmoms that I think would be interested in contributing to her article. I forwarded her the names of a few of my fellow Arizona heartmom bloggers. Especially  Lily's mom Jenna (who is the reason why I started a blog) and Ethan's mom Heidi (who is the reason I continue to post to my blog).

I will definitely be posting a link to the article once it's published and I'm going to buy the newspaper and frame the article too. For the record... yes, I *love* to write and I also love blogging. :)

Okay, quick Scarlett update: She's crawling, crawling, crawling all over the place. : ) I think she loves that she can kinda chase/follow her big sister Violet around. ....and Violet?... not  loving it so much. She's gonna have to get used to the fact that Scarlett can crawl over to her and play with her toys.  It was hilarious the other day because Violet was playing with puzzles and here comes Scarlett. so Violet says "no Scarlett! no!", then she says "mommy, help me!", so we moved the puzzles about 5 feet in opposite direction...well within seconds, here comes Scarlett to the new location.. and Violet says "no Scarlett!", so we move the puzzles again... and the same thing happens again. It was kind of like a Scarlett 'keep-away' game. It was fun and cute especially since Scarlett ultimately won. Violet gave up and Scarlett got to play with the puzzles. : )

Pediatrician 9-Mo Check-Up

Scarlett had her 9-month check up on Friday and she got a clean bill of health. woo hoo! She's small for her age (very small), but other than that, she's doing great! Dr. Gonzalez said that she wants to see her in a month because of her weight, but that's just to make sure that she gains some weight.

I don't know if I mentioned it or not, but Scarlett lost a whole pound in barely one week when she was still on the feeding tube and oxygen about a week after she was released from the hospital, because she was consistently vomiting her feeds.  We were able to get the vomiting to stop, but in that week that we were trying to figure out why she was puking, she lost a pound. This was significant because it's more than 10% of her body weight!

Beth (Scarlett's cardiologist) said to increase her calorie intake to 26 calories per ounce. So basically for every 6 ounces of breastmilk I pump, I will put 3 teaspoons of baby formula to help bulk Scarlett up.  It is working so far, because she weighed 14lbs 6oz at the ped office yesterday. However, overall she's still 'off-the-charts' for her weight (severely underweight). But like I said,... I'm told that's "normal" considering she's only 5-weeks post surgery.  So Dr. Gonzales will check her weight again in a month.

Scarlett loves eating her socks.

She's becoming more and more active and spends time on the floor playing independently with mommy or daddy close-by. She still has significant separation anxiety issues (and now her sister Violet has them too), which makes her *love* being held and hate being put down, but little by little she's getting there.

 

Her new favorite thing to do is play with the refrigerator magnets

I mention that Violet also has separation anxiety issues, because she sees me holding Scarlett and she says "Pick me up mommy! Pick me up!", then if I don't she has a total meltdown (as only a 2-year old can). It's not unusual for me to have Scarlett in one hand and Violet in the other. I feel really sorry for Violet, because I confess I ignore her a lot of the time because I have to attend to Scarlett's needs first. Poor little Violet. :(

So, needless to say, I love it when Scarlett is occupied with playing independently, because then I can squeeze in a little attention to my neglected 2 year old. Who, by the way is a 'challenging' child to begin with. Some people say Violet is "high spirited", and others would say "she's spoiled", but I just say she's a feisty little firecracker (gee.. I wonder where she gets that from?). My girls definitely have distinctly different personalities.  But one thing is certain. They are loved to pieces by their mommy and daddy. : )

(Violet, Todd, Scarlettt)