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, August 31, 2009

Two Bottom Teeth! And Flu Shot.

So I mentioned in my last post that I thought I saw 2 teeth on the bottom just under the gums surface, well I was right. This morning Todd calls me and says that Scarlett was biting his finger and he felt not one, but two teeth! Her bottom two teeth cut through this morning. (no wonder she's been extra fussy lately).

Well, it's about a week away from her heart cath, and Todd & I are both getting anxious. She's been eating less...only 1-2 ounces instead of 2-4 ounces per feed, and she's been pretty fussy lately. But now maybe that's because of her teething? Who knows...

She is just been really alert and curious. Her favorite thing to do is grab my necklace and put it in her mouth. I promptly take it out of her mouth only to have her grab it again and stick it in her mouth again. She's so adorable. I just love her sooo much. :)

Her second favorite thing to do is WATCH TV. Just like her daddy. She'll be fussing and fussing, then you turn the TV on, and her head turns and her eyes immediately fixate on whatever is on TV. She's a regular couch potato.... or couch tater tot, at least.

This morning Todd took Scarlett and Violet to the pediatrician for their flu shots. The doctor had told me on Friday that they are recommending the flu shot for high risk children, which Scarlett is, (and Violet is by default since she lives with Scarlett). Todd said they wer both VERY GOOD during their shots and hardly cried at all. My good little girls. I LOVE THEM SO MUCH! I guess now me and Todd have to go get our flu shots next...

Saturday, August 29, 2009

6-Month Check Up

Every now and then I catch Scarlett holding her own bottle. It's probably just a fluke, but I think its so precious. Here is a picture of her being a big girl drinking and holding her own bottle.
I took Scarlett for her six-month pediatrician check up yesterday. I was anxious to see if she'd gained any weight since Tuesday... and SHE DID! I don't know what the difference in calibration between the cardiologists scale and the pediatrician scale, but she weighed 14 lbs on Tuesday at the cardiologist, and 14lbs 4 oz at the pediatrician on Friday! Woo Hoo! Way to go baby girl!

I'm sure it had something to do with the increase in her calories, but either way, it made me happy. She was soooo good at the appointment. Quiet, attentive, cooperative. Very unlike her sister Violet who you could hear coming from halfway down the hall. Violet was a screamer. Scarlett is a zen baby. So calm, mellow and happy.

She got 4 shots (two in each leg). She cried big crocodile tears, but it quickly faded. She's such a good baby. Violet woulda been screaming all the way to the car!!

Speaking of Violet, I've been trying to potty train her for the entire summer, and no luck yet, but tonight we had a breakthrough. She was doing her usual I'm-gonna-sit-on-the-potty-and-do-nothing-for-10-minutes routine, then from out of no where, she peed!!! I applauded, said good job!, hooray!, jumped up and down, danced around and woo hoo! Hopefully this encourages her to use the potty more. But at the very least, it was a breakthrough. Yay!

I think Scarlett's two bottom teeth are going to break through soon. I coulda sworn I saw something this morning during her pediatrician appt when her little mouth was gaped open when she was crying from her shots.

Oh yeah, house update... Don't know if I mentioned that I put an offer in on a house right down the sidewalk from my current house (that I'm renting), but I'm still waiting to hear back from the bank on it. It's a short sale, and I'm told it can take up to 3 months for a response. I'm willing to wait and be patient, but I'm also getting antsy and anxious.

Thursday, August 27, 2009

Ethan's Funeral Today

Todd and I both got the day off work today to attend the funeral of Ethan Skidmore (6months old), who passed away one week ago from his CHD, HLHS. It is going to be very hard, and I doubt I'll be able to keep it together, but it's important to me to be there to show my support for Heidi, Greg and their children.

Scarlett ate like crud again yesterday which makes me think that she'll probably definitely have her second surgery in two weeks when she goes in for her heart cath. I had noticed that she'd been eating less, but it never occured to me that "poor feeding" was a sign that it is time for her next surgery. Thank God for monthly visits to the cardiologist, so they can assess these things.

It is extremely hard for me not to think about Scarlett's unknown fate. Today's funeral is going to be especially hard for me since I only met 2 mothers that last week in February when Scarlett had her first surgery. The first mom I met was Brooke Paulus [Angel Andie's mom] and the second mom was Heidi Skidmore [Angel Ethan's mom]. Our hospital rooms were extremely close...I was right next to Heidi, whose son is/was one day younger than Scarlett.... and Brooke was basically right next to Heidi too (on the other side). Why it is going to be hard for me is because BOTH Brooke and Heidi have lost their children due to complications of their child's CHD. Not that I'm thinking that Scarlett will suffer the same fate, but it's hard not to think about the fact that she's the last one remaining of those three. I'm starting to get teary-eyed thinking about it.

I read Brooke's blog on a regular basis and I feel so terrible for her. I can't help but even feel almost guilty that my child survived and is reaching the milestones that her beautiful little daughter should have reached and that she thinks about daily (Andie Grace was 2 days younger than Scarlett). And now everytime I see Heidi I'm going to feel the same way about Ethan. :(

Tuesday, August 25, 2009

Poor Weight Gain, Two Weeks Till Cardiac Cath

Okay, lots to report... I took Scarlett to the cardiologist today and she only gained 3oz since the last appointment which was 3 weeks ago. This means that she may have reached a plateau for weight gain... which means its possibly time for her next surgery (sooner rather than later).

It could also mean that she's getting more active, therefore burning more calories. Either way, surgery is inevitable (we knew this), however, if in two weeks she hasn't gained any weight then they ~might~ consider keeping her in the hospital and doing the surgery at the same time as her cardiac catheterization [aka angiogram] which is scheduled for Sept. 9th. (yikes, wasn't prepared to hear that!)

OR,..... She might go in on Sept. 9 for her heart cath, and maybe she gains weight and they let her go home and come back for her surgery later in the month, or maybe even wait another month and do the surgery in October??...

The heart cath will tell us a lot, but we already knew that. What was unexpected (for me at least), was that her weight gain would slow down. So, the cardiologist (Beth) is going to increase her calorie intake. She was on 26 calories per ounce, but starting today she's going to be on 28 calories per ounce.

In doing so, it will be even more apparent (that it's time for surgery) if she doesn't gain any weight in the next 2 weeks. So, I probably should mentally prepare myself for the fact that my daughter might be going under the knife in 2 weeks. Or... at the same time, I could just mentally prepare for the cardiac catheterization only and hope that she gains weight and her next surgery won't be till October.

I continue to pump every 4-6 hours. My breastmilk supply is up to 36-40 oz per day which is terrific (especially for a personal pump, and not a hospital grade pump). I definitely have plenty of breastmilk for her. What a 28 calorie diet means is that for every 6oz of breastmilk, I need to add 4 teaspoons of Nutramigen (formula). She used to be on a 26 calorie diet up until today.

I will keep everyone posted before, during and after her cardiac cath. Thanks for visiting!
Melodie :)

Monday, August 24, 2009

Cardiologist Appointment Tomorrow

I'm taking Scarlett for her routine cardiologist appointment tomorrow afternoon. Her oxygen sats are still in the low 80s, so I'm fairly certain they're gonna give her the thumbs up that everything is okay until her heart cath in 2 weeks.

I gave Scarlett some Gerber pears for dinner today. It's only the second food I've tried to offer her. She did pretty good, she ate about 1/4 of it. I don't want to push her since she's getting all the nutrition she needs from breastmilk, but the cardiologist said that it's probably good to get her started on the tactile coordination of eating solids before her next surgery which will probably be in late Sept or early/mid October.

Tonight I sent a message on Facebook to 20 other heart moms, and I was thinking that I'm either nuts or genuinely concerned/interested in knowing each and everyone of them. I know all the moms by sight (their name, their child's name and their child's defect), all because of the yahoo group, Facebook, and reading their blogs. I suppose I'm a heart mommy stalker, but I really truly do have good intentions. It makes me happy to know that I'm not alone in my CHD journey.

All in all, Scarlett is doing really good. She's rolling over back to tummy and tummy to back like an old pro. She's not quite sitting up yet, but she's trying. Sometimes she holds her own bottle, but she's not quite there yet either. She's just about to outgrow her size 3 month onesies, but the size 6 months are still a tad too big. I'm anxious to see how much she weighs tomorrow.

Sunday, August 23, 2009

Catching Up With Heart Moms

Yesterday at Chase Field, Scarletts cardiology team the "Scott and Laura Eller Congenital Heart Center" had a fundraiser called Picnic At The Park. Families with CHD children were able to sit on the field, run the bases, play catch in the outfield and watch the away game on the jumbotron.

Todd, Violet, Scarlett and I all went. We saw several other heart parents there, and it made me feel so good to be able to recognize [by name] the children and the parents alike. I really feel part of a FAMILY [of parents with children with Congenital Heart Defects (CHDs)].

The event was dedicated to Heidi's son Ethan who lost his battle with HLHS on August 21. It broke my heart, but tonight I converted Ethan's link on the side of my page to "Angel Ethan". : ( He is now in heaven with Jersey, Jake, Liam and Andie. God bless his beautiful soul.

Ethan's memorial services will be this Thursday. First thing tomorrow I'm going to ask my boss for the day off so that I can attend. Don't know if I mentioned this previously, but Heidi and I were right next to each other during Scarlett's first surgery, separated only by a wall. I saw her and Greg almost daily. Although I gave them their privacy, we did meet that last week in February, and we kept in touch via email off and on ever since. I took Ethan's passing very hard, because he was only 1 day younger than Scarlett.

I saw Heidi at the event yesterday. It was good to see her and Greg, but hard not to make 'sad eyes' and give them the 'I'm so sorry' look. I tried to keep it light, but inside I'm still torn up. But all in all, it was really nice to see so many other heart parents and catch up. We should do events like this more often.

Proud To Be A Heart Mom

So, I'm up at 2:30am pumping as usual... and I always do my daily pumping ritual: log on to Facebook, check my hotmail accts [both of them], check the Eller Congenital Heart Center Family Council yahoo group, then check on my 'Heart Friends' blogs.

I was welcoming a new heart mommy to FB, and I was sending Friend Suggestions to other heart mommys in my Friends list, when I realized that I have over 20 heart parent friends on FB. I was reflecting on how lucky I feel to be able to know (or at least be acquaintences with) so many mommys and daddys going through what I'm going through.

Thank God for modern technology. God Bless Facebook, Blogspot, Hotmail and Yahoo groups.

Friday, August 21, 2009

Rest In Peace Baby Ethan

There is a link on my blog to another heart baby named Ethan. He was born one day after Scarlett. We were in hospital rooms right next to each other. He was born with Hypoplastic Left Heart Syndrome and was only home for a total of 3 weeks since February. The rest of his short life he spent in the Pediatric CardioThorasic Intensive Care Unit at St. Joseph's Hospital.

His mom, Heidi, and I remained in contact with each other for the past 6 months, asking how each other's babys are doing etc.. I found out today that early this morning Ethan lost his battle with HLHS. I was at work when I read an email informing me. I immediately started sobbing. I was devastated with grief and could not compose myself for several hours. I feel so sorry for Heidi, her husband Greg and their 3 other children. I am deeply depressed by this unexpected and terribly sad news. : (
I have not been this upset since November 18 when I found out about Scarlett's heart defect. It is definitely a very sad day and I am in mourning.
Rest In Peace precious little angel Ethan. Beautiful baby boy 02/18/09 - 08/21/09

Sunday, August 16, 2009

Peas...No Likey

Yesterday I finally offered Scarlett some Gerber 1st Foods. She got to try some peas, and she didn't like them. It was adorable. I took pictures and video. I know Todd already offered her solids a few weeks ago (which I missed), but yesterday was my turn.

She is still doing great. She's rolling all over the place from back to tummy and from tummy to back. She is very loud when she is hungry and I don't make her bottle fast enough. But I love how demanding she is, because it is not nearly as much as Violet. Because for the most part, Scarlett is a pretty mellow baby. Only cries when hungry, tired or wet. Unlike her big sister Violet who came out screaming and hasn't stopped since! (Violet's a spitfire... Scarlett is zen baby)

Don't know if I ever mentioned that Scarlett likes to suck on her right pointer finger (instead of her thumb or binky). I think it is absoutely adorable. It brings her comfort just like Violet's binky brings her comfort, only I don't have to worry about leaving her finger at home!

Saturday, August 8, 2009

Swallow Study Failure

I took Scarlett to St. Joseph's Hospital for an outpatient procedure called a Modified Barrium Swallow (MBS) study on Friday. When Scarlett was around 2 weeks old, they noticed that she coughed a lot and did a MBS study on her that revealed that she was aspirating her food. This means that instead of the milk going down her esophagus it is going down her windpipe. This is bad. It means she can get fluid in her lungs and it could cause pneumonia.

So ever since she was 2 weeks old I've had to thicken her milk with gel packs made by a company called Simply Thick. The thickening of the milk helps Scarlett to swallow the milk instead of aspirating it.

They said she would probably outgrow this condition and I was hoping that yesterday's study would show that she wasn't aspirating her milk anymore... but no such luck. She is still aspirating her food, so I have to continue to give her the thickening agent in her milk. It's okay. It's not that big of a deal. I'm already used to adding it to her bottles. It's more of a nusiance, but it's a small price to pay for such a healthy (relatively speaking), strong, growing baby.

I was just really hoping to get rid of it since it costs money for the Simply Thick and it also causes constipation, which means I have to give Scarlett stool softener. But like I said... I'm just glad that she's still doing so well considering her heart condition.

Thursday, August 6, 2009

New date for Heart Cath

At Tuesday's cardiologist appointment, Beth said that Scarlett is doing awesome and her shunt looks great. She's developmentally on track and is growing like a weed. She weighs 13lbs 13ozs and grew 2 inches. Beth said from the looks of it, we can probably hold off on surgery until maybe September or October, but that we'll keep the cardiac catheterization date of Aug 11th as a voluntary procedure just to take a look at her heart, but that there was no urgency. This was great news.

Well, this afternoon the cardiologist's office called me and said that there was a sicker baby that needed Scarlett's heart-cath slot and that they're going to postpone Scarlett's heart cath until Sept. 9 This is both good and bad (in a good way). Good because the longer we can put off surgery, the longer it will be before she has to have surgery again. Good because it means she's doing great. and Good because it gives her time to grow and get stronger for her second "big" surgery.

'Bad' because I still have to keep her sheltered because she's still fragile and delicate with that BT shunt in place. 'Bad' because I still have to give her the asprin and lasix daily to prevent the shunt from clotting...and 'Bad' because I still have to plug her into the pulse-oximeter every night to monitor her oxygen saturation levels. But believe me, I'd take the so-called bad anyday over not having her at all.

When I read other mother's blogs of heart babies doing so much worse than Scarlett, or those who are sadly no longer with us, it makes me really appreciate that God let me keep my precious little heartbaby in my life, and that she's doing fantastic considering her condition.

Wednesday, August 5, 2009

Rolling, Rolling, Rolling...and Missed First Foods

So, according to my last post, Scarlett was supposed to be trying her first solid foods. As a mother, there are certain milestones that you want to be part of such as first steps, first words, and first foods, right?

Well, I had told Todd "We're going to start her on solids today no matter what!", because it seems like something always comes up which postpones the event. usual something came up and by the time I got around to being ready to sit her in the high chair, position her, picking out the food, the bib, the spoon, getting the camera.. etc.. it was already the next day. But before I started getting things ready, I said "todays the big day" and Todd says "big day for what?", and I say "First Foods!"... and Todd says "I already gave her peas yesterday". (what the...?) I was *crushed*. I said: did you take pictures?? and he said 'no'. and I said why would you do that without me and without video and without pictures? and he says "Cause you said we were gonna start her on solids today no matter what".

So now I have no pictures, no video and no memories of Scarlett's experience with first solid food :( I haven't tried since because I was so upset/sad/depressed about the whole situation.

But on a brighter note... Scarlett has been rolling from back to tummy for a few weeks now, but only very rarely. But on Friday last week, she was doing it regularly, so I posted on FB that she was officially rolling from back to tummy. Then 24 hours later, she was rolling from tummy to back! She just rolls back and forth, not in consecutive circles. I'm so proud of her! : ) and yes, I got it on video and took pics.