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.

Monday, November 30, 2009

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 :)

Wednesday, November 25, 2009

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! :)

Tuesday, November 24, 2009

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. : ( 

Monday, November 23, 2009

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 fa├žade 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.

Sunday, November 22, 2009

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. : )

Saturday, November 21, 2009

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)

Thursday, November 19, 2009

Putting on Weight


(Scarlett with her favorite blankie)


Scarlett had a cardiologist appointment on Tuesday and she gained a pound in the last 2 weeks. I was very happy to see she weighed 14lbs 3oz. Mind you, she hasn't gained anything since August (when she weighed 14lbs 4 oz), but her cardiologist said that this is 'normal' for cardiac kids post surgery.

Her oxygen level at the cardiologist was 99%! They said she's doing great. : ) Her appetite is back. No barfing. She is definitely thriving. Playing, crawling, talking, giggling. and her voice is stronger than ever. She's doing absolutely fantastic. The separation anxiety is still there, but it is a lot better now. Getting her to go to bed is a struggle. She cries and screams and fights it big time. But after a little more mommy love, she finally settles down for the night.

She still wears size 6 months pretty comfortably, but on Sunday I put her in a size 3-month dress and it fit her perfect ..not too big, not too small. I put her in her walker and she scoots around the kitchen. But normally she doesn't like being in it. I think she was only enjoying being in it because Violet was in the kitchen too.





(Scarlett with her big sister Violet)

Violet loves her little sister. She's always saying "I love her... she's so cute and tiny". I don't know who taught her "cute and tiny" but she says it all the time.  Whenever she see's Scarlett's scar she says: "Scarlett has a boo-boo." and I say "Yes she does"... and she says: "She has a boo-boo on her heart... owie". and I say "yes".  Scarlett wants to play with Violet more and more everyday. And of course Violet being an average 2-yr-old is insanely jealous and stingy with her toys.  She is constantly saying MINE!, and grabbing toys out of Scarlett's hands. Poor baby. So, right now I'm trying to teach Violet that sharing is caring. After awhile, Violet calms down and plays nice, and brings her toys to Scarlett like a good sister. I love them sooooo much. I am so happy I have 2 little girls. Girls Rule! :)

Tuesday, November 17, 2009

First Word


(She can sit up on her knees!)

Haven't had time to write recently (because when I get home I get scolded by Todd for playing on the computer), but I wanted to post a few new pics and to say that my little sweetheart has "officially" said her first word.

It's been a few weeks now (2 or 3?), but she very clearly, distinctly says "Ma-Ma" when she sees me. I am soooooooo proud and excited. I've been telling her "ma-ma...ma-ma....ma-ma" for months now, and it finally paid off. When I get home from work, the second she sees me, she starts crying and saying "Ma-Ma!... Ma-Ma!!"...    I LOVE IT!!!




Scarlett turns 9 months old today, and she's doing so great. She sits up and plays quietly by herself for up to 15 minutes at a time! (terrific break for ma-ma, who otherwise is holding her constantly)  She is crawling and sitting up on her knees. (see above pic).  She is so happy, and I'm happy for her.


(Violet 2 1/2 years, Scarlett 9 months)

I was finally able to get a pic of my girls together. I love them so much and I am so thankful that I have them in my life. :)

Monday, November 16, 2009

The Kindness Of Strangers

There is a quote from the Tennessee Williams's play 'A Streetcar Named Desire' in which the main character says "I have always depended on the kindness of strangers".  I'm not saying that I have *always* depended on the kindness of strangers, however, it never ceases to amaze me. . . the kindness of others.

My work has a program in which those in need of 'leave' time can solicit others who have an abundance of 'leave' time. Those with several hours of accumulated vacation/leave time {who are willing and able}, may selflessly volunteer to donate some of their time to another who would otherwise be on unpaid leave...see where this is headed?

Back in February/March/April when I was on maternity leave caring for Scarlett post-surgery, I only had 6 weeks of my own vacation/sick leave. A call went out to my co-workers that I was going to be on unpaid leave (starting week 7), and the generosity came pouring in. I was able to be paid for at least 3 more weeks of my time which I otherwise would not have been.

Unfortunately, I am not able to properly thank these people because it is a policy that 'donors' are not revealed to the recipient for privacy purposes. Even if the donor says it is okay to tell the person that they donated, our personnel will not divulge who the kind strangers are. It's a shame, really. But it doesn't make me any less appreciative.

I guess it shouldn't surprise me because I believe in karma. A while back (2 years ago) I had a co-worker who experienced an unexpected medical emergency which required her to be off work to care for a very sick family member who had had a stroke. Although I had very little accumulated vacation time (only 2 days), I donated one day to her (which, at the time was quite a sacrifice!), because she needed it more than me. A year later, I donated again because it's the right thing to do.  If you have...give. Be selfless. Be generous. Do unto others as you'd have them do unto you.

Well, once again, my co-workers stepped up to the plate to help me for Scarlett's most recent surgery (5-weeks ago today). I had obviously exhausted most of my sick/vacation leave (from being out for 3 months on maternity leave), and once again I would have been on unpaid time off. However, I was able to take 3 weeks off without any interruption in my pay. It is amazing...the caring acts of others. But it doesn't end there...

Last week, I received a phone call from a former co-worker (same company, different department). I hadn't worked with this person in 3 years and had only kept in touch through casual phone calls and in coincidental bumpings-into. She is retiring from our company this week after nearly 30 years of service. Needless to say that she has quite a few unused vacation hours that she has accumulated over the years. She had asked around my former office if anyone knew of anyone who was in need of 'time'. My name came up (she had no idea about Scarlett's heart condition).

She called me and said: I have time and I heard you need time... we got talking about Scarlett about her surgeries, about her recovery. This person said she would immediately send our Personnel division some 'time' for me (that is the only way I know who to thank... if they tell me themselves that they donated leave time to me).

I told her: "I'm going to write about this in my blog". I was so touched that she thought of (remembered) me and furthermore that she took the time to donate some of her leave time to me. Thank you Theresa.

I wish I could thank each and every one of of the people who donated their vacation time to me. I am truly humbled and grateful. My entire family (Todd, Violet, Scarlett and me) thanks you, whoever you are. God Bless You All : )

Wednesday, November 11, 2009

Clapping, Crawling, and Eating Peas


This morning, I put Scarlett in the middle of the living room to play with some toys and I walked over to the kitchen sink to start a bucket of hot water to mop, and about 30 seconds later, there was Scarlett on the floor in the kitchen 12 feet from where I originally set her!

She's been scooting around lately doing the 'army crawl', but not really crawling up on all fours. But this morning, I saw it with my own eyes...she was up on all fours and making her best attempt to crawl.  It was adorable because she looked kinda like a frog. She's move her front two 'feet', then sorta hop with her back two feet. But she was doing it pretty fast so she appeared to be actually be crawling/hopping like a frog.  It'll be no time at all that she'll be really crawling on all 4's and then pulling herself up on the coffee table and couch. I'd say that her separation anxiety is now 75%, as opposed to 50% yesterday and last week.  I think she's liking her new found ability.

Speaking of new abilities, Todd said today that she also went from a crawling position to a sitting position all on her own which she hadn't done up until now. I haven't seen her do it yet, but I can easily believe it given her new independence. :)

But wait, there's more!....she has a super exciting new ability: she clapped for the first time today! I wasn't clapping, and she wasn't watching anyone else clap, but there she was with both of her little hands clapping them together! :) Go baby girl!! Now, if I start clapping and say: "clap! clap!", she'll start clapping too. Totally precious. When I showed Todd today, we both almost started crying. She's so smart and so adorable.

Ever since she's been eating Gerber Puffs, I've wanted to start giving her finger foods. First Cheerios, and today I threw a couple peas on her high chair.





I don't know if she actually ate any of them, but she definitely went for it. She made a couple of funny faces... like what the heck are these? But she still tried them, which is great!

I can't believe it's only been 4 weeks/2 days since her 7-hour open heart surgery. She's doing so fantastic! Thank You God!

Heartmom Friends


(Brenda with Diego [HLHS], me and Scarlett [TOF], Shelley with Ellery [TOF])

I had mentioned in a previous post that up until Scarlett was 2 months old, I only knew 1 other Heartmom. When I was pregnant, I asked (more like insisted) the cardiologist to be connected with another mom of a baby with a heart condition...preferrably one with Scarlett's same defect. Beth (Scarlett's cardiologist) gave me the phone number of Molly C and I called and left her a voicemail...something along the lines of "hi, u don't know me, but Beth gave me your number...and my daughter is going to be born with the same thing your son/daughter has and I was hoping we can talk..etc..".  Then when she called back we had a very nice, long talk about how, when, where we found out about our baby's defects.

Then of course I had a million questions about what to expect during my hospital stay, surgery, post-surgery, etc...I am so thankful that I was able to meet Molly and her son in person last January (a month before Scarlett was born). Then, the day Scarlett was born, she was there to offer support and encouragement and we have kept in contact ever since, and for that I am thankful.

Well, in that same previous post "Heartmom", I also mentioned how I became acquainted with *several* other heartmoms back in April this year...and I wanted to take the time to mention again how utterly proud and happy I am that I know these other supportive and caring women.



 (Molly W with Mark [HLHS], me and Scarlett [TOF] )

Last month, when I was in the hospital with Scarlett I had 9 (count them, nine) heartmom visitors. In order: Heidi A, Molly W, Jenna M, Kimberly V, Molly C, Radhika R, Heidi S, Brooke P and Rosemarie T.  Allow me to back up a second... I adamantly told my friends and family that I was not allowing any visitors during Scarlett's recovery.  In fact, my aunt who works for St. Joe's came up to the 7th floor and tried to see Scarlett (albeit the day of her surgery), and was turned away by the front desk (check-in station). They told my aunt that Scarlett was not allowed any visitors. So the entire time Scarlett was in there, I didn't have any visitors...except heartmoms.

When my first visitor arrived at the door (day 2 after surgery) to my hospital room, I joked with her ..."how did u make it past the guards?", then I joked: "I guess heartmom's are exempt from the 'no visitor' rule'" ; ) because heartmoms know all the staff on the 7th floor PCTICU, and usually don't have to stop to check-in.  I'm so glad she came, I *love* seeing and talking to other heartmoms.

I said it before and I'll say it again.. no one understands you like another heartmom. No one understands the PCTICU environment, the medicines, the doctors, the IV lines, the nurses, the monitors, the alarms, the 'rounds', the feeding tube, the pulse-ox, the oxygen, the surgery, the recovery, the sleepless nights, the worry, the fear, and the successes like a fellow heartmom.

The clinic where I take Scarlett for her biweekly cardiologist visits is also on the St. Joseph's campus. So, when heartmoms (including myself) take their baby for their routine check-ups, and we know someone who is on the 7th floor, it's very easy and convenient to pop up there just to say "hi" to fellow heartmoms and heartbabies.

I think that can account for at least 5 of the 9 visitors I had (they were there anyway, and made the decision to stop on by since they were in the 'hood). But on the opposite realm, some of these heartmoms not only took the time to come visit me, they purposefully drove down to the hospital for the sole purpose of stopping by to see me and Scarlett. These heartmoms even brought me lunch, brought Scarlett toys, blankets and stuffed animals. They are so nice. I love my community of heartmom friends.


(Heartmoms: Heidi S (mom to Ethan[HLHS], me, Radhika R (mom to Rish [HLHS])

I am on Facebook and I am friends with 38 heartparents (wow! that even shocked me typing it!) I love reading their posts and seeing pictures of their heartbabies. It is so great! Facebook and this blog are such a godsend to me. I am thankful for modern technology, and most of all I am thankful for Heartmom friends. :)

By the way Scarlett is still doing really great. She's trying to crawl and still has moderate separation anxiety. She is 4 weeks post-surgery and she's doing better and better with each passing day. Thank you God for all my blessings today.

Tuesday, November 10, 2009

Exclusive Pumping Sucks...Literally

Two nights in a row Scarlett has woken up crying a new cry. Actually, it's more like screaming that she's hungry. It's not her normal.."mommy I'm hungry, feed me please" pitiful little cry like before....it's more like a "mommy, I'M STARVING HOW DARE YOU IGNORE ME AND LET ME SUFFER?? WHERE'S MY FOOD?!!!" kind of cry. It's very demanding sounding, and it doesn't stop until she'd fed.

So, each night (same as the night before for the last 8 months) I get up, I microwave a cup of water, while that's cooking, I open the fridge, take out my pre-pared thickened, fortified breastmilk, take out a clean empty 4-5ounce bottle, pour out 3-4-5 ounces into the bottle...search for clean nipple and caps...wait for the water to finish warming up in the microwave (for 1 minute, 20 seconds), then I put the bottle of cold fortified, thickened BM into the hot water and I wait...and I wait...and I shake the bottle, put it back in the water....and I wait...and I shake some more...and I wait some more...

Then I test the temperature of the milk on the inside of my wrist...if it's still too cold, I put it back in the water, wait some more....and wait some more...and shake the bottle again and put it back in the water....then after about 5 minutes it's FINALLY done/ready to feed Scarlett. Total elapsed time: 6-7 minutes [From the time she wakes me up screaming, to the time that she's actually eating]. Did I mention that the screaming doesn't stop until she starts eating? Because it doesn't......and did I mention that it's not a casual: "I'm hungry-it's time to eat" cry...it's more like a: "I'm starving when-the-heck-are-u-gonna-feed-me-how-much-longer-is-it-gonna-take-you-bad-mommy" cry. Because yeah... for the ENTIRE 6-7 minutes she screams her head off inconsolabaly. My poor baby.

So it just makes me ponder...is this worth it? Is making her wait and get upset worth the value ane benefit of breastmilk?  It would be completely different if I could at least nurse her, but I can't. I have to pump. And I hate it. : (

More than once in the last 8 months I've gone on several breastfeeding websites to remind myself the benefits of breastfeeding and I just roll my eyes when I read information such as this:

· When you breastfeed, there are no bottles and nipples to sterilize. Unlike human milk straight from the breast, infant formula has a chance of being contaminated. (Obviously *not* true if you have to exclusively pump and feed your baby expressed breastmilk)


· Breastfeeding makes your life easier. You do not have to purchase, measure, and mix formula. There are no bottles to warm in the middle of the night!  (HA! I wish! again, not true if you're forced to exclusively pump AND fortify your expressed milk)

· Breastfeeding can save you between $1,160 and $3,915 per year, depending on the brand of formula. (yeah, cut that number maybe in half if you have to fortify your breastmilk depending on the calorie recipe 22-24-26-28 calorie..the greater the calorie, the more formula u use and before Scarlett's surgery she was at 28!...so definitely not "saving" on formula!)

· A mother can satisfy her baby's hunger right away with breastfeeding. (I'm coughing from gagging on the sarcasm...see above story in this post!)

· Breastfeeding requires a mother to take some quiet relaxed time for herself and her baby, helping them bond. Physical contact is important to newborns and can help them feel more secure, warm, and comforted. Breastfeeding mothers may have increased self-confidence and feelings of closeness and bonding with their infants.  (I wasn't even able to SEE Scarlett for 12 hours after she was born...and I wasn't able to hold her for 48 hours! Bonding??? I don't think so.)

So back to the title of this post...sorry to burst any heartmom's pipedreams of breastfeeding/nursing, but exclusive pumping (if you are forced to do so) really is the pits. It sucks...literally and metaphorically.   Other websites say a benefit of breastfeeding is convenience. Like, you don't have to worry about packing formula, bottles, nipples, water, etc, when 'on the go'. NOT TRUE if you're exclusively pumping. It's waaaaay more work.

Whenever I take Scarlett to the cardiologist, or to the pediatrician, I have to pack way more than if I was simply nursing. I have to pack a mini-cooler with an ice pack and prepared bottles of fortified/thickened breastmilk. THEN on top of that I have to pack a coffee mug to warm water in...THEN on top of that I have to pack my breastpump and ALL the accessories. Two bottles, two caps (or breastmilk storage bags), the flanges, the connectors, the membranes, the powercord, the tubes, and a cover-up if I have to pump in public. It's far from "convenient".

Here is a pic of a pump (similar to mine) and the accessories I have to clean and remember to bring with me:


 Please don't misunderstand me... I am a pumping queen. I'm an "exclusive pumping" champion and I wouldn't change it for the world (okay maybe I would change it for actualy nursing!)... but after 8 months, I'm tired, Scarlett's more demanding, and I start to lack the confidence and forget the true benefits of breastmilk. Reading passages like I mentioned above do nothing to boost my willpower, and I find myself thinking what am I doing this for? But something inside me tells me only 4 more months.
 
Subconsiously I give myself a guilt-trip thinking..look at what your baby went through!, the least you can do is pump some milk for her... quit complaining you whiner! Then that usually peps me up for the next pumping session.
 
Other 'exclusively pumping' heartmoms are a major source of encouragement for me. I think: if they can do it, so can I!  But when I hear about moms that give up... I'm tempted. I think... Wow, it would be so nice to be able to not be in pain, to not clean my pump parts... etc.. But then the little voice inside me says: Knock it off Melodie! suck it up and do it for Scarlett!  So, I motivate again to another day with me and my pump.
 
Okay that's enough therapeutic venting for today. If you're still reading this, thanks for letting me use my blog to pour my heart out about the woes of exclusively pumping. I appreciate your time. :)  back to pump now... mooooo!

Sunday, November 8, 2009

Chowin' Down On Gerber Puffs


Scarlett had a really good day today. She was very happy. She had a good night too. I sat her in her high chair and gave her some Gerber Puffs and she chowed down. It was great!



(see the puff on her right arm?)

Before surgery I introduced Gerber Puffs to her and she choked the first couple of times, but was beginning to get the hang of it. I've been afraid to give them to her post-surgery, but today she seemed ready. I put a few on her tray and watched as she spread them everywhere and carefully picked them up one by one and put them in her mouth. It was so precious. She just went for it immediately.  Of course, she didn't eat them all, and they were all over the place... the floor, her cheek, her arm, inside her onesie, in between her and the high chair etc. But I would say that she did eat a fair amount of puffs.

She was doing so well with the puffs that I threw in some Cheerios too, and she crunched and munched those too! I'm so happy for her. But on a weird note, she was fine with HER putting them in her mouth, but everytime I tried to put on in her mouth she turned her head and gave me a dirty look like ...how dare you try to feed me?!...but then went back to grabbing them with her little fingers and stuffing them in her mouth. I tried at least 3 or 4 times to put a Cheerio or Puff in her mouth and each time she firmly closed her lips and turned her head away from me (the little stinker!).  I don't care though. She was very happy and content eating her little finger foods. 

This morning I also let her gnaw on a Gerber Biter Biscuit. I watched her diligently the entire time to make sure she didn't choke, and she did very well. I took a few pics:





P.S. Yes, she's a U of A Wildcat's fan, because her mom is a U of A alumni! Go Cats!

Saturday, November 7, 2009

100% Voice Back



This morning me and Scarlett were hanging out on the bed, when it dawned on me that she has 100% of her voice back. That's great news. I can hear her crying from across the house. Before she still sounded real faint when she cried, but now, she's back to her old sweet adorable voice. :)

Yesterday I was able to put her in her exersaucer and she was very happy to be in it.



Everyday she is more and more like her 'old' self. The only difference I notice (other than the obvious pinker color) from her old self to her new self is that before surgery she was completely disinterested in pacifiers. She hated them. We had them, but hardly ever used them, because she preferred to suck on her pointer finger rather than suck on a pacifier.  Well, surgery changed all that...



She LOVES her pacifier now. It calms her down and definitely soothes her. We always have to have them around for when she gets fussy. I was already thankful that Scarlett wasn't going to be like her big sister Violet (a binky junky), who is totally addicted to her pacifier which she calls a binky. But no such luck...maybe since Scarlett still likes sucking on her finger she'll outgrow the pacifier faster than Violet, but I'm obviously not going to take anything away from her right now.

She's been a lot more 'less fussy' lately which is a Godsend because Todd and I are exahusted from having two extremely clingy and needy children. Violet has been uber clingy lately probably because of being ignored frequently, and Scarlett had TWO teeth coming in on the top! So she was extra super fussy because she was teething big time. She'll have her two front teeth for Christmas, so she doesn't have to ask Santa for them (get it?  the song..? oh never mind..)

So, now Scarlett has 3 teeth on top and 2 teeth on bottom. But the 2 new teeth on top are barely breaking through and one of them is pretty big!

Overall, she's been a lot happier lately. I'd have to say her status has changed from "High Maintenance" to "Medium Maintenance". ; ) and probably by next week, she'll be all the way back to her old self of "Low Maintenance", or Zen Baby as we used to call her.

Thursday, November 5, 2009

Shameless Plug for Snuggin'Go


When Scarlett was around 3 months old, I attended a small meeting with other heart moms when I noticed that all of them (well, those who brought their heart babies) had a contraption in their stroller/carseat called a "Snuggin Go". It is an infant positioner and support system that promotes oxygen circulation and and head support. Scarlett is pictured here with hers:



Back in June (after that meeting), a fellow heartmom told me that Beth (Scarlett's cardiologist) could get me one at a discount. So the next time I was at clinic (a biweekly cardiologist appt for Scarlett) I asked Beth about the Snuggin Go and told her that another heart mom said that I could get one at a discount.

Let me back up for a second... Beth is actually a nurse practitioner... not a cardiologist, but I always call her 'My baby's cardiologist' because she is the one I page at all hours of the night, and she's the one I've seen every 2-3 weeks since Scarlett was born, she's the one who calls to check on Scarlett, she's the one who was there the day Scarlett was born, etc... I love Beth, I cannot say enough positive things about her. She is an amazing person and I have the highest respect for her. I've been working with Beth since November last year [2008] when I found out about Scarlett's heart defect in utero (when I was 25 weeks pregnant).

Okay back to Snuggin'Go...so I was at clinic back in June when I asked her about her product (she created/invented it), and she tells me... "I'm doing a photo shoot this Sunday at my house for the 'Snuggin'Go Too', do u want to bring Scarlett by to be in the photo shoot?"...and of course being the proud momma I am, I said "OF COURSE!". So, back in June I took my unassuming little 4-month-old sleeping baby to Beth's house for a photo shoot to launch her new product.

The photographer took pictures of Scarlett sleeping in her carseat (because she was asleep when we arrived), then we woke her up and took pictures of her with the Snuggin'Go.  There were other babies at the photo shoot of varying ages and taking pictures in high chairs, jogging strollers, swing, bouncy seat, etc. 

Well, Scarlett fell asleep towards the end of the photo shoot and Beth said she wanted a few additional photos for a true 'before and after' comparison (since all the other before pics Scarlett was sleeping and all the after pics she was awake). So the photographer took some more 'after' pics and we left not knowing the true specialness of those last few photos.

Well....it turns out that the before and after pictures came out so good that Beth used them on the Snuggin'Go website!  check it out! My baby is a model! : )  Totally exciting!  And that's not even where the excitement ends... Scarlett's picture is going to be featured on the actual product!!!...Meaning, very soon when you purchase a Sunggin Go, Scarlett's before/after images will be in the paper insert! on the packaging AND furthermore... the actual product will be sold at major retail stores like Target and Babies 'R' Us as soon as 2010 (next year)!

I've known about this for a long time (well for at least 4 months)... but wanted to post this on my blog because I am so proud of my baby. : ) If I had known her pics were going to be on the product and sold nationally, I woulda at least put a bow on her or something... ; ) ...but it doesn't matter. She's still a model (albeit a sleeping one) nonetheless.

Now for my shameless plug on the Snuggin Go... because, believe it or not the first 8 paragraphs weren't promoting the product itself.  I've been using it since late June and I absolutely love it. You can really see a difference in Scarlett's posture when she's using it. I wish I had several of them...one for the high chair, her crib, and definitely for her hospital bed. It really helps them keep their chin off of their chest and their head from slouching over when they fall asleep in their carseat.  I do support/promote this product 100%. Every mom should have one, especially heartmoms!



The advertisement for the Snuggin'Go will be featured in a couple of upcoming magazine issues (but I can't for the life of me remember which ones..) I'll post which ones in a later post. It was already featured in  "Raising Arizona Kids" magazine. It's pretty exciting. When I figure out which national magazines it'll be featured in, I'll post it and I'll also post the pics of the insert with Scarlett as the Before/After model.

In the meantime, if you're a heartmom, I highly recommend purchasing and using one, they're worth it! :)

My New License Plate!



I had posted back in September that I ordered a new license plate from the AZ Dept of Motor Vehicles (http://www.servicearizona.com/) to signify my new title of "HeartMom". I checked the mail everyday [which is *not* like me] for it to come. Todd even asked me: "Are you expecting something, why do you keep checking the mail everyday?"  You see, we are notorious for only checking our mailbox once a month...if that... because it is kinda far from our house, and evidentally we're both extremely lazy.

I mean, when I was growing up, the mailbox was RIGHT IN FRONT of my house. It was simply a matter of walking to the end of my driveway to check the mail. Plus, you knew when the mailman was coming because you could hear their vehicle approaching from a few houses down. Sometimes when the mailman (okay, mail'person') had an oversized package (bigger than our rather smallish mailbox), he would actually walk up to our front door, ring our doorbell and HAND DELIVER our mail to us [imagine that!].

But nowadays, in new home communities in Phoenix, you have to walk 4 houses down and one block over to the 'common mailbox area' and remember to take your key just to check your mail. It's a pain in the booty and I therefore hate checking my mail (and only do it once a month). Only a couple of times has my lackadaisical mail retreiving efforts backfired (i.e. my Target 10% off coupon expires in 30 days, and I'd wait 32 days to check my mail, therefore missing out on my limited time discount). But usually 9 times out of 10, I never missing anything important, so no harm, no foul in only checking the mail once a month.

However, after I ordered my new license plate online, I checked the mail every single day up until Scarlett's surgery. When it hadn't arrived before October 12, I knew it would be waiting for me when we came home and sure enough... I was right.

Sorry for not posting my new license plate pics sooner,  but that certainly doesn't diminish the fact that I'm utterly proud of my new plate. :) Todd was even kind of jealous...he said "I want one too" with a pouty face. So I said "really?... I can order you a HeartDad one if you want", and he said yes. So, that's next on the agenda.

I also have my new bumper sticker on my Jeep to go with my new license plate:



I'm pretty gosh darn proud to display both. :)

Wednesday, November 4, 2009

Human Pin Cushion



It's been three weeks and 2 days since Scarlett's 2nd open-heart surgery and every time I change her diaper, I'm reminded that she was a human pin cushion throughout the duration of her hospital stay. The site where her groin arterial IV line was located is still very obvious to see when I'm changing her diaper. Don’t know if I mentioned it or not, but they actually SEW those IV lines in! So she has holes from the arterial IV needle and holes from the multiple stitches to keep it in. (same with the arterial IV line in her neck).

In addition to her left groin, she still has needle prick marks on both hands, both feet, both wrists, right neck, and the insides of both of her elbows (I don't know what that area is called, but its where most lab phlebotomists take blood from and where United Blood Services draws blood from.)

Speaking of United Blood Services, I have an appointment on Monday to donate. This will be my third time donating blood (I’ve attempted before, but I usually don’t pass the iron test). I told our blood donation coordinator, Kathy, that I will ALWAYS be a blood donor because of Scarlett. She had to get blood for both her first and second surgeries.

Well, I’m happy to announce that Scarlett is doing fantastic. Every day is a little better than the previous. She’s getting less and less fussy and more and more independent. Slowly she’s returning to her previous (pre-surgery) self.

At yesterday’s cardiologist appointment she only weighed 13lbs, 4 ounces. I was very sad because last week, she weighed 14lbs 4oz, so she lost a whole pound in a week! [not good] :( But Beth (Scarlett’s cardiologist) wasn’t too too concerned. She said it was because Scarlett was throwing up so much and we had to do 1/2 milk and 1/2 Pedialyte (not enough calories to gain weight successfully) for a few days.

So yesterday Beth said to increase my breastmilk calories from 22 to 24. That means I add 2 teaspoons of Nutramigen baby formula to every 6 ounces of my breastmilk. (No biggie). Hopefully she’ll beef up a little bit. She’s definitely getting her appetite back which is just marvelous. :) We don’t have to go back to the cardiologist for 2 weeks. And maybe this next time it’ll be for 1 month, then 3 months!! I can’t believe or imagine a day when we only have to go once every 3 months! Hello normalcy… here I come!

Oh, and I was a little worried about her coming off the oxygen prematurely, but at yesterday’s cardiologist visit she was 100%!!! Yeeeeeee haw! Fellow heartmom Julie was teasing me yesterday at the CHIEF graduation saying that Scarlett was just ‘showing off’ that she was tube free… like Scarlett was saying ‘look at me, no oxygen ha ha, look at me no feeding tube, ha ha!’, because Julie’s poor baby Eva still has both. : ( poor lil darling. Julie was carrying around Eva in the front with two backpacks in the back. One for the feeding pump and one for the portable oxygen tank. I feel very bad for her, and I count my blessings that Scarlett is doing so well.


Things are getting better and better everyday and I’m so happy. I feel really lucky and truly blessed. :)

CHIEF Graduation


Today Scarlett graduated from the CHIEF Program! ABC news was there in the morning and interviewed fellow heartmom Shelly (London's mom) and Scarlett's cardiologist Beth. You can see their interview here.

Every year, St. Joseph's Hospital performs close to 300 pediatric open-heart surgeries. Of those patients, some children will never need another surgery again. Some children will need at least two, and some children will need 3,4,5 or more, or a lifetime of surgeries and visits to the cardiologist. Of those 300, the top 20 highest risk patients are automatically enrolled in the CHIEF Program. Highest Risk means they are most vulnerable to die a sudden death caused by their heart condition.


The CHIEF (Complex Congenital Heart Infant Evaluation and Follow-up) Program is a home surveillance plan, adapted from the home monitoring program developed by the Children's Hospital of Wisconsin. Scarlett was sent home back in March (after her first open heart surgery on Feb. 25) on a feeding tube, and a pulse-oximeter machine. The hospital gave us a red notebook "the CHIEF notebook" with information on Scarlett's heart condition, her medications, her doctors, her feeding(s), and the CHIEF program.

To quote from the red notebook "While many children with complex congenital heart disease are stable enough to go home from the hospital after their first operations, they are still at high risk for complications due to the nature of their heart disease. Because these children have to maintain a very sensitive balance in their oxygen flow and their hydration, even a small change can lead to a critical or life-threatening situation. Many of the children enrolled in this program have only a small (3-4mm) tube that brings blood to the lungs to get oxygen, and this is their only supply of blood to the lungs. If the child becomes dehydrated, that shunt can develop clots and close off. For this reason, even a minor illness in these children needs to be taken very seriously and parents are instructed to call the nurse-on-call to expedite triage with the cardiology team."

"The CHIEF program involves frequent office visits and phone contact with the caregivers of these patients, in order to closely monitor their oxygen saturations and weight gain. Each CHIEF infant has an individualized care plan and will be seen weekly, biweekly and/or monthly depending on the infant's status"

"Use of pulse oximetry and weight trends in this group of high-risk patients has also been found to be helpful in determining timing for the next stage of surgical intervention. At approximately 4-5 months of age, or when the pulse-oximetry trends are consistently in the 70% range or the child begins to fall off their individual growth curve, the next stage of repair is usually indicated. (meaning time for surgery #2 or #3). The patient's circulation (after second or third surgery) is deemed more stable and the child will graduate from the CHIEF Program."



Me, nurse Asia and Scarlett


Dr. Lane, Beth and Scarlett

Today was a big day for Scarlett. She and 17 other babies graduated from the CHIEF program. It was a beautiful ceremony in the Healing Garden of St. Joseph’s Hospital (in Phoenix). They served a really nice brunch and had a celebratory cake (it was beautiful!). This was the 2nd CHIEF Graduation ever held, and I took tons of pictures.

All the heartmoms and heartbabies honored today



the cake


.


us with Dr. Pophal (her cardiologist from now on)





Todd, Scarlett and "the God" Dr. Cleveland. (he saved her life!)

It was nice to socialize with other heartmoms, and to see ‘former graduates’ in attendance. I had no idea that Scarlett was in the top 20 “high-risk” category. I knew she was CHIEF, but I guess I didn’t realize how dire her condition really was.
 
What a wonderful program for St. Joe’s to offer and what an extremely thoughtful idea to honor and recognize all the heart babies and heart parents of these extra special and fragile babies in a graduation ceremony.

Monday, November 2, 2009

Baby's First Halloween



I bought Scarlett a Tinkerbell costume at Babies R Us the day that they put out the costumes (back in August). I've been looking forward to her wearing it all month. I was so sad when I thought there was a chance that she may still be hospitalized on Halloween, and I still feel so lucky that she's doing fantastic considering all she's been through.

We had planned all along that I would stay home and hand out candy and Todd would take Violet Trick-or-Treating. But the morning of Halloween, my friend invited us to her sister's house for a Halloween party for kids. She said it would have 'the works'. Costume contest, bobbing for apples, games, halloween treats (popcorn balls, pretzel broomsticks, carrot fingers, white chocolate covered donut hole eyeballs, rat cupcakes etc). I told Todd that we couldn't let Scarlett be around all those kids especially it being RSV season. I told Todd "If u can get Beth's blessing to go, then we'll go, otherwise we stay".

So Todd called Beth and asked her if we could go (I still never verified, but I'm taking his word for it), and according to Todd, Beth said that it would probably be good to get Scarlett out of the house and for her to see other kids and it might actually help with her separation anxiety. So, around 5pm, we loaded the kids and headed over my friend's sister's house. The place was totally decked out for Halloween and everyone was in really cool costumes.


Violet was dressed as Supergirl, she was the smallest kid (next to Scarlett).



I was a hippy, Todd was a scary monster, Scarlett was Tinkerbell and Violet was Supergirl.



We took Scarlett Trick-or-Treating with Violet (well, I held her and just followed the kids, we didn't walk up to the door, we stayed on the sidewalk) and Scarlett had such a good time being amazed at the outside world. I'm sure the fresh air did her good. She's never really been outside before except on the walk from the garage to the doctor's office.



Violet ate more candy on Halloween than she's ever eaten in her entire life. (I don't give her candy...ever). I'm surprised she didn't puke!



Scarlett wasn't scared of Todd's costume (notice her little magic wand?). She wasn't scared of anything. She just stared in wonder and awe at everything. We didn't stay long. We left around 8pm and were home by 8:30. 

About an hour after we got home around 9:30pm, our doorbell rang! It was tardy Trick-or-Treaters!! I had bought 7 bags of candy because my neighborhood is loaded with kids and we were hit hard last year, I had an entire witch's cauldron FULL of candy leftover since we ended up going out and since I CAN'T EAT IT because of my lactose-free diet. So, I told the group of 5 kids..."take as much as you want". So they weren't modest, they scooped, and scooped, and scooped candy into their no-longer-empty loot bags. I'm pretty sure I made their day/night/year. :)


Todd took Scarlett inside of a garage-turned-Haunted-House. Violet was super scared and Todd had to carry her but he said Scarlett giggled the entire time. My fearless little heart baby. Overall, a good time was had by all.  I coudn't have hoped for a more memorable Baby's First Halloween. :)