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.

Wednesday, September 30, 2009

CT Scan Went Well

Anytime your baby goes under anesthesia it is stressful.  But when the anesthesiologist said he was going to "stop her heart" so they could take x-ray pictures, my eyeballs just about popped out of my head like you see in cartoons. (WHAT?!) I thought to myself, why didn't anyone warn me about this? 

Why the heck do you have to stop her heart? He said, not only does she have to lay perfectly still, but I will stop her breathing so she's literally motionless for aproximately 8-10 seconds to take some pictures. He said it was normal (common). Meanwhile, I'm beginning to panic and think OMG whatif he can't get it 'started' again? Tears started welling up...I feel like such a wussy sometimes....

So I handed my baby over to the CT scan tech and they say we can be in the room while they put her under. (how cool and weird is that?). So I took these pics. Then when she was completely out we left the room so they could get an IV in her. We waited in the lobby for 20 minutes, then the helper guy comes out and says 'okay, they have the IV in, they're gonna get started now', then another 25-30 minutes later he comes back out and says 'okay they're done, u can come back now'... Again, Todd and I pop up like we were on fire and practically ran back to where she was, and there was my darling little baby all swaddled in a white hopspital blanket with an oxygen mask on her sadly whimpering.

I was able to hold her right away. They said she did really good. Her sats were kinda low (in the 60s), so we sent Todd back to the car to get the O2 tank we brought from home. She went home on oxygen, and Todd kept her on it all day. I went back to work after the appt and by the time I got home, she was already off the oxygen. Todd said he spot checked her throughout the day and she was back up in the 70s.
Well, one more week till her BIG surgery. I hope it happens this time.

After the CT scan, we walked across the sidewalk for a brief visit to Beth (her regular cardiologist). Apparently we love that place so much, we just can't stay away not even for a week... But really, it was because yesterday Scarlett had a mysterious bad diaper rash that I wanted Beth to take a peek at. Evidently from the looks of things it is a yeast infection..nothing that a little prescription ointment can't fix. She should be looking better in no time.

I took these pics because my friend Rosemarie bought Scarlett this adorable dress. I feel so bad that I never dress Scarlett up in cute dresses. She only wears comfy onesies, because she doesn't go out anywhere that warrants getting her all 'dolled up'. Unfortunately, she's a very sheltered baby. But this morning, I thought... I'm gonna put on her cute little dress to go see Beth, Asia and Veronica. She ended up wearing the cute dress all day. :)

Tuesday, September 29, 2009

CT Scan Tomorrow

So, I'm at work this morning around 9am and my cell phone rings and it's Beth (Scarlett's cardiologist). She says "Hi, did you get my message"... I immediately think to myself ....ah crap, they're rescheduling her surgery...., and I say "nooooo?...what message?", and she proceeds to tell me what I knew she'd tell me.

Evidently Dr. Cleveland, Dr. Pophal, Beth, and the others met for their weekly 'Cardiac Conference' this morning. Scarlett was brought up as a patient who was having surgery this week. Dr. C asked Dr. P to go over the results of the heart cath 3 weeks ago... then Dr. C said he really wants another CT scan done of Scarlett’s heart before her surgery.

Beth says that her CT scan will be tomorrow and that the surgery scheduler will be calling me to schedule it. I ask “So, this means her surgery won’t be on Thursday?”, and she says “no”….My initial reaction is "AHHHH!" (I wanted to scream), but I just quietly and patiently listened to Beth explain that Scarlett’s collateral arteries on the right side are wrapped around the aortic arch, and Dr. C wants to know where they are originating from, which only a CT scan can show.

I guess the upside is that I’m thankful that Dr. Cleveland wants to know exactly what he’s doing when he gets in there. This is a major reconstructive surgery on a very fragile area. Dr. C will be operating through a microscope. I want him to know as much as possible about Scarlett’s heart before he gets in there.

Beth also said that another reason her surgery is being rescheduled is because they don’t have a homograft in Scarlett’s size (for her weight and size). They rescheduled her surgery for next Thursday, same time. This is a tentative date as well…dependant on the approval of Dr. Cleveland.

So tomorrow morning we check in at 6:45am for the CT Scan, it shouldn’t take very long, but since they have to put her under general anesthesia there is a good possibility she’ll come home on oxygen, so we’re just gonna take the tank with us this time so there’s no reason for them to keep us there.

Surgery Postponed

Hi this is Melodie's sister Melissa. Scarlett's cardiologist called Melodie and told her that the surgery is being postponed at least a week for two reasons:

1.) The homograft was unavailable (the human donor tissue) which will be implanted to replace her pulmonary artery 
2.) The surgeon wants to do one last CT scan of her heart before he goes in for the BIG surgery

She will post more tonight.


Heart Mom

Ever since April 2009 when the Scott and Laura Eller Congenital Heart Center at St. Joseph's Hospital held their first meeting of fellow heart parents in what is called the "Family Heart Council", I have considered myself a "Heart Mom". On that evening, I was introduced to about 15 other heart moms. Before Scarlett was born, I had the opportunity to meet one fellow heart mom (Molly C) whose son also has Tetralogy of Fallot (but not  TOF with Pulmonary Atresia, like Scarlett). I felt so lucky to be able to meet other heart moms who were going through what I was going through. But, it was also an unexpectedly sad meeting for me.

I drove home from that April meeting crying the entire way. Why? Because I met 3 out of 15 heart mommies (Brooke, Daradee and Heidi A), who have lost their children to complications from their child's CHD. I guess I just tried so hard to focus on the positive (all the CHD survivors), I forgot to think about the negative (the CHD angels). That night, I heard the phrase "she/he earned her angel's wings" for the first time. The word "angel" will never be the same to me has a whole new meaning.

But on that night in April I also met 12 heart moms who are struggling heart moms like me. It is a curious thing... to immediately bond with a complete stranger. Because you can completely understand each other's anxiety, sorrow, stress, joy, and gratitude to have your CHD child in your life.  Only another heart mom understands the ups and downs of a pulse-ox machine, feeding tubes, oxygen cannulas, fortifying breastmilk, administering daily heart medications, echocardiograms, hospital stays, etc... Through the Heart Family Council, I have made friends for life. No one understands what it is like to go through what you're going through like a fellow heart mom (sorry all u heart dads out there).

So, to celebrate my new title (as of February 17) of Heart Mom, last week I ordered a personalized license plate from the Dept of Motor Vehicles. It will read: "HRTMOM1", and I will proudly display it on the back of my Jeep. I'll post pics when it arrives. :)

Sunday, September 27, 2009

Small World

A lot of people know that I love the book "My Heart Vs. The Real World: Children with Heart Disease, In Photographs & Interviews" by Max S. Gerber. I posted a book review on, and on my Facebook page. I love this book, I want everyone to read this book. There's even a link to the website on the right side of this blog under Heart Links.

The book highlights the lives of 10 children coping with a CHD (Congenital Heart Defect), their lives, experiences, angst, woes, inspirations, hopes, fears, etc.. It's written from the viewpoint of the children or sometimes the parents. I was moved to tears several times in this book, because these kids are so courageous and wise beyond their years. The author himself is also a subject in the book since he also has a CHD. He has Bradycardia (abnormally slow heart rate), and lives with a pacemaker.

Recently, I found out that my co-worker's younger sister also has a pacemaker (like the author of this book). Her CHD was found later in life, when she was 13. I was invited to my co-worker's bridal shower last weekend, where I met her CHD sister.

I introduced myself to the sister and she asked me "You're the one with the daughter with CHD, right?", and I said "Yes". Then making small talk, I asked her: "You have a pacemaker, right? Because I don't see your scar?" She was wearing a scoop neck shirt which would have normally revealed an open-heart surgery (OHS) scar. She said a pacemaker scar is different from an OHS scar, which she showed me. She said she'd never had OHS.

Her mom was standing near us, so she said "Mom, her daughter has the same thing Dylan has..". Which of course peaked my curiosity... so I said "You know someone who has the same heart defect as my daughter?", and she says "Yeah, my friend Dylan"....
Remembering that there is a boy in the book named Dylan, I ask her "Was he in a book?", and my co-worker's sister says "Yes!", and I said "My Heart Vs. The Real World?", and she said "Oh my gosh, you know that book?", and I said "It's one of my favorite books..."
Then we just started chatting and chatting. Me, her, her mom.. It turns out Dylan does not have what Scarlett has, but it is still totally cool that she is friends with several of the kids in the book that she met at Camp Del Corazon in Los Angeles. Talk about Six Degrees of Separation. . . What a small world.

If you would like to buy the book (which I highly recommend), you can find it on Amazon HERE.

Thursday, September 24, 2009

Surgery Explanation 3

Okay, so I found these pics yesterday. This is a NORMAL heart:

This is a heart with Pulmonary Atresia VSD:

The three circled areas represent 1.) Pulmonary stenosis/atresia in the pulmonary arteries [the 'T' shaped thingy] 2.)MAPCAs [the twig-like thingys growing off of the aorta] and 3.) the VSD [hole between left & right ventricles (blue and red parts)] (stenosis=thinning/atresia=absent)(aorta=the fat pink vessel connected to the red side of the heart in this pic... the aorta is the largest artery in the body, originating from the left ventricle of the heart and bringing oxygenated blood to all parts of the body)

As mentioned previously, if the "T' shaped thingy represents a tree [a trunk and two branches]the vertical part of the "T" [the trunk], is missing in Scarlett and the horizontal parts of the "T" [the branches] are very small just like this picture.

During Scarlett's surgery, Dr. Cleveland is going to implant a homograft/conduit (from a human cadaver) to replace the 'trunk' in the aforementioned analogy. He is then going to test the pressures in the 'branches'. Depending on the pressures, he can do one of two things. 1.) He can cut off some of the collateral arteries (MAPCAs) [aka the 'twig thingys'] and dispose of them...or 2.) He can cut off the MAPCAs, bind them together and create a make-shift 'branch' to help the undersized existing branches.

While up during one of my midnight-2am-4am feedings, I found a pretty complex report/presentation on Pulmonary Atresia VSD. I don't know when it was dated, but I did see 2003 somewhere so it was at least a few years ago. If you have extra time on your hands and you're really bored and have nothing better to do (like at 3am when you're up pumping like me ;)..., it's interesting reading. It's 56 pages long....but here it is: Management and classification of collateral vessels in Fallots with Pulmonary Atresia and VSD. Warning tho, there are a few graphic pictures so it's not for the weak-stomached.

Back to her surgery... if the pressures in her branches are too high, then Dr. Cleveland will just backpeddle and implant a bigger shunt. Like pictured below. This is basically what her heart looks like now (minus the 'trunk') you can see the BT shunt at the top of the pic connecting the aorta (big fat light pink vessel) to the underdeveloped pulmonary artery branches:

One Week From Today

It is hard to believe that one week from today my precious 7 month old little baby will be fighting the greatest battle of her life to date. She's been so happy lately. Laughing, playing, teething, doing the army crawl, eating solids...

She even has her appetite back, putting down 4 sometimes 5 ounces at a time. She's mastering sitting up like an old pro. She still falls/tips over every now and then, but she's getting better at it every day. I have to believe in my heart that she's going into this surgery stronger than ever, so she'll come out of it stronger than ever.

I bought Scarlett a Tinkerbell costume for Halloween. Violet's going to be either a witch or Cinderella (it all depends on her mood that day). I'm trying to keep my mind occupied with things other than Scarlett's major open-heart surgery in one week, but it's very difficult not to think about it when everyone I run into asks me "How's the baby?".

I find myself saying "well, her surgery is going to be on Oct 1...etc", to people who don't even know that she has a heart defect,..they were just asking me cuz they know I just had a baby...(oops). Its happened to me 3-4 times already. I guess I just assume everyone at my work knows about her CHD and her upcoming surgeries, I forget that there actually are people who have no idea. No idea the little private hell I go thru everyday. I really hate being a working mother. Maybe from now on, I'll just say "She's doing great" no matter who asks me. That covers it anyway, right?

Wednesday, September 23, 2009

Surgery Explanation 2

MAPCAs (Major Aorto-Pulmonary Collateral Arteries) labeled here with the letter "C" are the second reason why her Oct. 1st surgery is so complex, challenging, difficult and will take all day. Evidently, normal people like you and me do not have MAPCAs, but it is very common for patients with Tetralogy of Fallot/Pulmonary Atresia to have them.

I am no doctor, but from what I've read [internet education], when the heart doesn't have a pulmonary artery to send blood through, it compensates by creating tons and tons of tiny collateral arteries instead. MAPCAS are practically useless little veins connected to your heart.

For Scarlett, Dr. Cleveland will have to implant the homograft (conduit) and test pressure in her right ventricle/existing tiny pulmonary arteries. If the pressures are too high, he *might* cut off several of her MAPCAS, bundle them together, and relocate them to another area in her heart where they will be more useful (its called unifocalization). This is obviously tedious and time consuming, and Dr. C has to be careful, meticulous, and calculating. (God Speed to Dr. Cleveland).

Also from my internet research: "The management of infants and children with pulmonary atresia, ventricular septal defect, and multiple aorta pulmonary collateral arteries (PA/VSD/MAPCA) has proven to be challenging. Therapeutic approaches have included staged unifocalization, shunting, coiling of collateral vessels, and heart/lung transplantation"

She already has a shunt, and they already coiled one of her collateral vessels. Dr. C talked about inserting stents later in her life (he's being optimistic about her chances for survival, at least..).

I have been up and down emotionally since Friday. I am doing fine, then someone asks me how the baby is...or when her surgery is, and I fall to pieces answering them. I cried 3 separate times at work yesterday and I'm tearing up as I write this. I really should at least TRY to be strong, but it scares the crud out of me that my daughter has to undergo this risky operation in 8 days. :(

Sunday, September 20, 2009

Surprise Hospital Visitors

I have been remiss in neglecting to mention that during Scarlett's most recent hospital stay (for her heart cath) we had some very special unexpected visitors. First and foremost, Eva's mom Julie came down the hall as our 1st visitor. Eva has been in the hospital with HLHS since she was born on June 5. Julie didn't have to take the time to come to see Scarlett, but she did and I thought it was very thoughtful of her.

Our next surprise visitor was one of my aunts. She works at St. Joe's in the emergency room and was on her way home when she ran into me by chance in the lobby by the elevator. She came all the way up to the 7th floor (PCTICU) for a short visit. While she was still there my 3rd surprise visitor came by.

Paridhi, another fellow heartmom stopped by to see Scarlett (and Eva), while she was at clinic dropping off surplus supplies that could be recycled by other heart moms [very thoughtful/great idea, btw]. Paridhi brought Scarlett the most adorable fluffy white teddy bear, it was so unexpected and thoughtful of her. She stayed for a longer visit. It was nice to be able to talk/chat/bond and relate to another heartmom who has been there-done that.

While Paridhi was still there our 4th surprise visitor(s) came by. A very nice lady named Karen Alaniz (also a heartmom) and another nice heartmom with her stopped by and gave me a carepackage. A sturdy canvas bag filled with lots of special goodies. Karen said she represented a non-profit organization called "Mended Little Hearts" [also called Saving Little Hearts] of Phoenix. It is a organization providing support for heart moms in the Phoenix area. Karen said that they meet the last Tuesday of the month, if I was interested in attending. I told Karen that Paridhi was also a heart mom, and they gave her a bag too!

The bag was loaded with all kinds of treats. A spiral notebook, a pen, crayons, coloring book, stress ball (shaped like a heart), disposable camera, popcorn, M&Ms, peanuts, a deck of cards, gum, prepaid phone card(!), hand sanitizer, Kleenex, cheese 'n crackers, Skittles, toothbrush, toothpaste, a notepad, a stuffed animal (the raccoon mascot for MLH) and a reusable water bottle!!! I was very impressed to say the least. What a terrific idea. Here is a pic I took of the bag.

Saturday, September 19, 2009

Surgery Explanation 1

I found this picture on the internet. It is of a normal heart, then three below it with Pulmonary Atresia VSD, which is what Dr. Cleveland referred to is as (as opposed to Tetralogy of Fallot with Pulmonary Atresia).

In the first pic, a healthy heart, you can see the pulmonary artery (labeled PA), then in the pic labeled 1, you see hole between the RV & LV (right & left ventricle). This hole is called a Ventricular Septal Defect, or VSD. The PA shown in pic 1 is skinny but in Scarlett's heart it's absent. Pic 1 also shows MAPCAs (major-aorticopulmonary collateral arteries ), one of which was coiled off during Scarlett's heart cath last Wednesday.

During the "full repair", Dr. Cleveland will patch the hole (the VSD) and he will implant a homograft to replace the pulmonary artery. Picture 2 shows the hole (VSD) being patched, and Pic 3 shows the homograft.

What is tricky during this surgery is that Dr. Cleveland has to test her arteries, veins, vessels, valves for pressure resistance. He is going to go in and place the homograft. After the homograft (which Dr. C confirmed will be human tissue, not pig tissue) is placed, Dr. C has to do a series of pressure tests. Based on the results of these tests, [how her heart is going to behave/react to the homograft], he will continue with patching up the hole (VSD), and completing the surgery.
However, if during the pressure tests, her heart is working overtime, and the pressures are too high, he's going to take out the homograft, leave the hole open (unpatched), and just replace her shunt with a bigger shunt.

She's going into surgery on 10/1 at 7:30am. Dr. Cleveland said that hopefully around 1:00pm, he will be able to determine whether or not he can complete the the full repair or not. We will be in the PCTICU (in her room) waiting. Dr. C will call the PCTICU with status updates during her surgery (just like they did the first time).

This is just a small part of what her surgery will consist of. I will post more about her procedure in the days to come. But her surgery is going to be a lot more complicated than I described above. Because of her MAPCAs, it complicates things. Also, because her existing pulmonary arteries (the ones going left/right, not the one going up/down) are also underdeveloped, there may be other complications that arise. This might be a little too technical or confusing , but I thought I'd at least try to explain why her surgery is higher risk and more complicated than a 'regular' Tetralogy of Fallot full repair. Thanks for reading.

Friday, September 18, 2009

Extremely Scary Surgical Consult

Okay... only two words can describe the surgical consult this morning...Extremely Scary.

I love Dr. Cleveland for not sugar-coating it for me and being straightforward....but Wow...I guess I wasn't prepared for all the 'risks' that are involved with my baby's upcoming surgery. Don't get me wrong. I know that docs always scare patients with the 'worst case scenarios', but this was different. You see, this marks my 3rd surgical consult with Dr. Cleveland. The first was when I was still pregnant. The second was when Scarlett was one week old (the night before her first surgery), and today was the third.

The first and second surgical consults were the ~same schtick~ you get with any surgery.. this risk, that risk, blah blah blah... They always tell you about possible risks, worse case, etc... But this time, when Dr. Cleveland told me that Scarlett was at quote: "a very real risk" of a stroke, VCP (vocal cord paralysis), other random paralysis, possibly requiring a pacemaker, and had higher risk of not even surviving the surgery, I had a hard time not losing it.

I guess normal open heart surgeries on infants have a success rate of 95% (or have a mortality rate of 5%). I knew this the first time around. However this time, Dr. Cleveland said that for her type of surgery that increases to a mortality rate of 7-10%. And although one would think that 90% success rate are 'good odds', all I could think is that I have a 1 in ten chance of only having my baby for 13 more days. Her surgery is scheduled for Thursday, October 1, 2009 at 7:30am.

For her last surgery, Dr. Cleveland was very reassuring during the consultation(s) and I felt pretty confident that she was gonna be okay. I wasn't hysterical (like I felt today). Last time, Dr. C made me feel like this is a routine surgery, will take a few hours (4-5), she'll be fine. Last time, they were able to have her as the '2nd case' meaning there will be another surgery before or after hers. No Big Deal... right?

This time, Dr. C said that this is NOT like the first surgery. This one is extremely complicated, will take considerably longer (7-10 hours?). Her's will be the only surgery that day. It is very complex and there are a lot of variables involved and much greater risks involved. Last time she was on a ventilator, but not a heart/lung bypass machine. This time they will stop her heart and she'll be on the bypass machine. Which increases a whole slew of very real, very scary complications and risks.

I know Scarlett needs this surgery, and I pray that everything will be okay, but I am so scared now. Yes, I know that Dr. C has to disclose all the risks, and yes, I realize he has to tell me the worst case scenario, hello... I'm not an idiot. But I left today's surgical consult more worried than ever. I'm going to be a basket case in 13 days. : ( God, please take care of my little Scarlett, I love her so much. Send your angels to watch over her before, during and after her surgery. Amen.

Thursday, September 17, 2009

Full Repair vs. Bigger Shunt

People keep asking me what the difference between a 'full repair' and a 'bigger shunt' means, so here is my attempt at answering it.

Scarlett has Tetralogy of Fallot with Pulmonary Atresia. That means that her pulmonary artery did not form when she was in my tummy. So, when she was born, the right side of her heart was pumping blood and it was going nowhere except to the left side of her heart, then the left side of her heart was pumping un-oxygenated blood to the rest of her body.

In a normal heart, the right side pumps un-oxygenated blood to the lungs (via the pulmonary artery), where it picks up oxygen,.. then the blood comes back to the heart through smaller pulmonary veins/arteries, to the left side of the heart (now fully oxygenated), then the left side of the heart pumps the oxygen rich blood to the rest of the body (through the aorta).

In the following picture, the Pulmonary Artery is shaped like a letter "T". Scarlett has the left and right side of the "T" (the branches), but not the vertical part (or the main trunk) that connects it to the right ventricle.

Since Scarlett's main pulmonary artery is absent (pulmonary atresia), the surgeon is going to implant something called a homograft (donor tissue from human or pig cadaver) to replace the pulmonary branch that never formed. The use of human (or animal) valves usually means less risk of infection, but is a more complex surgery than other valve repair or replacement procedures.

The reason why I want a full repair is because it means Scarlett can live more of a 'normal' life. Right now she is still considered high-risk because of her shunt. She is being kept alive with a tiny piece of plastic. That piece of plastic can get infected, can develop clots, can develop leaks, etc.. So in a preventative measure, Todd and I keep Scarlett completely sheltered from the world. Scarlett basically only leaves the house to go to the cardiologist or the pediatrician. It is extremely rare for us to take her anywhere else. We simply can't risk her getting sick and something happening to that shunt.

So, if they do a full repair, that means she won't need surgery again until she's 3. If they just replace her shunt, then she'll probably need surgery sooner to replace it again.

Of course all of this is just my speculation. Our surgical consult is tomorrow morning. I will write more details after I talk to Dr. Cleveland .

Wednesday, September 16, 2009

Surgical Consult In Two Days

I got a call from Beth today (Scarlett's cardiologist) about what she heard from Dr. Pophal (cardiologist who did Scarlett's heart cath) regarding the 'cardiac conference' (meeting of all the cardiologists responsible for Scarlett's care) which took place yesterday morning.

Beth said that Dr. Cleveland (Scarlett's pediatric heart surgeon) favors the full repair (yay!), and he'll be scheduling a surgical consult with us in the next week. I told Beth that Laverne (medical assistant for Dr. Cleveland) already called me to schedule it for Friday. Beth said Dr. Cleveland is gonna want to meet Scarlett and discuss with us the plan for her next surgery.

I said: "Do I have to bring Scarlett with us??, because I wasn't planning on it?", and Beth says "Yes, you have to bring her so Dr. Cleveland can examine her (pre-surgery)", and I'm thinking to myself... ahh crud... Only because if it was just me and Todd going, we can leave work, go to the appt, then go right back to work and only miss 1-2 hours of work. But if we have to take Scarlett with us, then I have to go to work in downtown Phoenix (3rd Street Van Buren), all the way back home to get Scarlett (51st Ave/Baseline), turn around and drive all the way back to the hospital (5th Ave/Thomas)... go to the appt, then drive all the way back home in Laveen, just to turn around and drive all the way back to work downtown. (total time 3-4 hours). I know it sounds like I'm complaining, but I'm not, I just wasn't planning on taking her.

Luckily Todd will leave work earlier to go back home to get Scarlett (while I stay at work), then after the consult, I'll take Scarlett back home, so he can go immediately back to work, so it all works out in the end. No worries.

I'm gonna be at the Scott and Laura Eller Congenital Heart Center (S&LE CHC) at St. Joseph's Hospital on Friday, September 18 for the surgical consult, then again on Monday, September 21st for the photo shoot. What photo shoot you may ask? Well, the S&LE CHC is going to be publishing a heart calendar of heart babies (who are patients at the S&LE CHC) for 2010.

The calendar's month of June is designated as Tetralogy of Fallot [TOF] month. Scarlett is going to be cover girl for June with fellow TOF heart babies: Addison B, Brooklyn, Ellery, Angel, Erik, Mikaela, and Gabriel. June will have a beach theme, and the kids will all be sitting together in a beach-like setting. I think it'll be great! Which reminds me that if you would like to purchase a heart-baby 2010 calendar, please email me and let me know!

Tuesday, September 15, 2009

Off of Oxygen!

Scarlett was off of the oxygen all day yesterday, and was still sating in the mid 70s, so we're definitely keeping it off until her next surgery. I kept her plugged into the pulse-ox all night last night and everytime I checked it (at least 6-7 times throughout the night), it was still 76-77-78, now that's what I'm talkin' about... (yay!)

I got a call from someone named Laverne from the Eller Congenital Heart Center today saying that Dr. Cleveland wanted to schedule the surgical consult for Friday. I asked if she knew when Scarlett's next surgery would be scheduled for and she said that's what Dr. Cleveland wants to talk to us about. So we're going in at 10am on Friday to determine what they're gonna do, and when they're gonna do it. I'm getting more anxious. I just want answers.

Monday, September 14, 2009

Love/Hate Relationship With Pulse-Ox

So last night (this morning, really), I couldn't stand it any more so I put the O2 back on her. It was worrying me that her oxygen levels were wavering in the 65 arena. I woke up my nice, peaceful, warm, cozy, sleeping baby to put back on the cheek stickers and shove the nasal tubes up her nose. SHE WAS EXTREMELY PERTURBED. She screamed, and started crying loudly...which of course woke up my 2 year old (Violet), who also started crying. I kept apologizing to both of them patiently trying to explain that Scarlett needed the oxygen because her levels were too low.

She kept fighting me and fighting me, she refused to cooperate and used her hands and head to struggle with me to do anything in her power from keeping me from putting those darn tubes back up her poor little nose. But I finally got the stickers and tubes back on and I turned the O2 tank back on. Her sats went from 63 to 70, then 69.....then 90! , Then 87, 85, 84 then 71, then 83, 82, 80, 79, 77, then right back down to 67, 66, 68, 69. I am so CONFUSED! Pick a number already?! Does she really need the oxygen? Or is the probe just old, or out of place? Ahhhhh!

Then of course Scarlett didn't want to go back to bed. So now it's 3am, 3:15am, 3:30am, 4:00am. I'm exhausted, but she's wide awake and upset with me. So her O2 levels are now hanging in the 75-85 arena and she's wimpering from being so upset. Plus she's 'mouth breathing', because the nasal cannula is pushed up against her nostrils to the point that she can't breathe out of her nose, so she has to breathe out of her mouth! (thereby defeating the purpose of sending oxygen up her nose which she's not able to breathe in/out of). So finally, I surrender... I take off the cannula, turn off the O2, unplug her from the pulse-ox and put her in her crib and she almost instantly falls asleep (tube free).

In the morning (well 3 hrs later...), I plug her in again. She's 75. I think to myself... I knew it, she's fine. I tortured her for nothing. Now her poor little cheeks are bright red from irritation from putting on/taking off the tape, and her nose is dry and sore (and practically bloody) from the O2 tubes.

I have decided I have a love / hate relationship with Scarlett's pulse-ox machine...which by the way seems to be waaay bulkier than other pulse-ox machines I've seen posted on other heart mom blogs. Now I know why Beth says to spot check instead of keeping her plugged in 24/7.

So I've decided that Scarlett is officially OFF the oxygen (again). Which is great news! Tomorrow is the 'meeting-of-the-minds' also called the cardiac conference where Scarlett's team of cardiologists, nurse practitioners, and surgeons will meet to discuss the next course of action for her treatment. ( i.e. What are they going to do and When are they going to do it). I'm fully expecting her next surgery to be the first week in October, and I am also 90% sure it will be the 'full repair' as opposed to just another shunt, but I'll know more tomorrow (or Wednesday at the latest).

Update on Todd's dad... he is doing stable. He is still in the ICU, but Todd was able to go see him today and what he has appears to be treatable, he will hopefully be home before long. Thanks for everyones prayers for Scarlett's grandpa.

BTW: I left my camera at grandma Elva's house yesterday which is why I haven't posted any new pics, but here is one of Scarlett's 6 month photos.

O2 Ups And Downs

Saturday night I took her off the O2 while she slept because her sats were still in the low 80s/high 70s, so I kept if off all night. Then yesterday (Sunday) morning, I kept it turned off and I spot checked her around 9am. It was 77-79ish, so I called the cardiologist and asked if I could just keep her off the O2, and the cardiologist said yes. (woo hoo!)

I was so happy, I thought Thank God, she only needed the O2 for 24-48 hours after being released (or for 4 days post cath). But, maybe...maybe not. Tonight, right before she went to bed I plugged her in and checked her again and she was 75-77, a little down, but still above 70, which is the benchmark for needing the O2. I unplugged her from the pulse-ox (so she doesn't choke herself on the cords while she sleeps), and went to bed myself.

Well, when I woke up to pump, I checked her again and it was 65! What the heck? Why did it go down by 10 points??! I don't know if it's a misreading on the pulse-ox, but even after a half hour it was still 70-71. I want to just put her back on the O2, but it is totally a struggle to fight with her to get the tube up her nose and taped to her cheeks. : ( Plus, I already removed the 'cheek stickers' that hold the nasal cannula in place and her cheeks are bright red from the irritation from the tape. I don't want to do that to her again, but obviously I don't want her to be having possibly dangerously low O2 levels? What to do...what to do? Should I wake her up and torture her with the struggle to get the O2 tube back on?....

I just checked her again (it's been about an hour already), and she was 74. Beth said that as long as it's above 70, she's fine, but I'm still a little worried. Tomorrow, if it is 70 or 69, I'm gonna turn the O2 back on. I really don't want to take any chances with her levels getting too low.

On a different topic, Scarlett's only living grandpa (Todd's dad) is in the ICU! :( He was diagnosed 5 years ago with the crippling disease ALS [Amyotrophic Lateral Sclerosis], also called Lou Gehrig's Disease. Todd's sister called him last night to tell him that their dad was rushed to the emergency room in critical condition. I hope that he makes it, but he's a very sick person (already in the last stages of ALS...wheelchair, ventilator, trache, can no longer move/speak on his own). I feel for Todd, he loves his dad very much. I hope Scarlett's grandpa makes it, but I also don't want him to suffer anymore. If you're reading this, please say a little prayer for him. Thanks.

Saturday, September 12, 2009

We're Hooooome.

Apria delivered the oxygen tank around 6:45pm last night, so the hospital discharged us and we were home by 7:30pm. It was nice to have Scarlett home and not connected to the heart monitors, blood pressure cuff, and pulse-ox...but the oxygen obviously came home with us.

She really hates having it in her nose and she keeps pulling it out. I had to wake up about 5-6 times last night to put it back in her nose. Her eyeballs got plenty of oxygen last night... Here is a pic I took of what I woke up to multiple times last night (I took it this morning).

Violet woke up this morning and said "what's that mommy?", and I said "It's an oxygen tank", and she said "Oxygen Tank", and I said "yes.. it's for Scarlett". Last night when Violet saw Scarlett, she said "Mommy, Scarlett has a boo-boo!.. ", and I said "yeah", and she said "We need to go home and get a bandage!" So this morning when we were moving Scarlett from the bedroom to the living room, Violet hugged the oxygen tank and said "I love it mommy", and I said "You love the oxygen tank?", and she said "yes!", then she proceeded to give the oxygen tank a big hug. I had to take a pic. The O2 tank got lots of love from Violet this morning.

Scarlett slept pretty well last night. and the oxygen tank is literally silent.

She's in a good mood this morning. I'm sure she's happy to be home with mommy, daddy and big sister Violet.

Friday, September 11, 2009

Going Home Today!

This is what I saw when I came to the hospital after work. My baby sitting up in her hospital crib playing with her toys with NO OXYGEN! yay!, But alas...., her oxygen sats were down, so they put the nasal cannula of O2 back on her. She was not happy.

APRIA called me at 4pm and said that they should have the O2 tank here by 8pm, so we're going home when they get here! Yippee. I know Scarlett is not happy being here. My poor little darling.

Again, a shout out to all the heart moms whose babies are or were on O2 at home. I don't know how you guys did it. Scarlett hates the tubes and gets really upset and keeps pulling it out of her nose. She gets really mad. I concur there's a special place in heaven for heart moms with kids on O2, feeding tubes, or pulse-ox machines... God Bless Us!

Waiting for O2 Tank

The doctors just met for their 1:00pm conference. They're gonna send us home on oxygen. We're waiting to see whether or not Apria can deliver the O2 tank today, if they can, we'll go home today, if they can't, then we'll go home tomorrow.

She's still on the agenda for Tuesday's 'Cardiac Conference' to discuss exactly what they want to do to her during her 2nd surgery. I might not have a date/answer until Thursday next week, because the surgeons want to think about/research findings that were discussed in the Tuesday (9/15) meeting.

Laura (nurse practitioner) said she anticipates surgery the first week in October.

Thursday, September 10, 2009

24 More Hours in PCTICU

Seems we are enjoying our stay here so much we want to stay another night. Around 10am I was still wondering whether or not they were going to send her home on O2 or keep her here... when in strolls sweet lovable Dr. Lane (he's just like a big teddy bear).

I asked what was up and he said 'well, one of two things are gonna happen. 1.) we're going to send her home on O2, or 2.) we're gonna keep her here over the weekend, then next week they'll determine whether we consider keeping her and doing surgery' (Whhhat?!), then he says 'the next 24 hours will tell us more.' So I say:' Soooo, we're staying another night?..cuz I didn't even know that much...' and he says: 'Yes, definitely one more night and we'll reevaluate tomorrow'.

So we're here for at least one more day possibly more...(?) Just to repeat a bit... her oxygen levels are good when she's sitting still or sleeping, but the minute she starts playing, babbling, fussing, crying (basically moving), they dip in the 60s. They want them above 75.

She's fine with the O2 nasal cannula, but when they shut off the oxygen, her O2 sats dip. Here is a pic of her with our day nurse Kristi:

She has an IV line in her leg/ankle and she keeps bending her foot and causing the alarms in the IV to go off, so the nurse last night put this big 'ol sock on her to stop her from pulling at it, or putting it in her mouth. It looks so funny.

So all day today they are going to try to wean her off the oxygen and see how she's doing....let's keep our fingers crossed... but I don't know what I'm crossing them for (honestly!)... I kind of want her surgery over with, but I kind of want her to go home too...I guess I'm crossing them that she comes off the oxygen, goes home, has a chance for her arteries to grow, then comes back in 4 weeks for her surgery. Yeah, that sounds good, right?

Rough Night - Fussy Baby

She's asleep right now (6am), but wasn't about 10 minutes ago... she was crying, crying, crying, poor little baby. They came in at 5am to take chest x-rays (good morning to you too!...), and woke her up and she wouldn't settle back down again until just now.

Same thing happened last night. Fussy, crying, irritable, didn't go to bed until after midnight. Inconsolable... I felt so sorry for her. Poor girl.

Her oxygen levels aren't what they should's unusual and has me a little concerned. When she's awake whether fussing, crying or even just moving (the slightest stirring), her oxygen levels take a dip (in the 60s), but then when she sleeps or lies still, she's okay again (above 75). The nurse (Laura) said this is not typical. Laura said Scarlett does a lot of mouth breathing so that could also contribute to her low-ish O2 levels when she's awake.

Last night the nurse tried to turn off the O2 to see how she'd react, and sure enough, her sats took a dip, so we had to leave it on. I'm getting a little worried that she might have to come home on oxygen. BTW: I have a new found respect for any heart mom whose child is on oxygen...Lord Bless You... Scarlett keeps trying to pull the tubes out of her nose, it is obviously uncomfortable/annoying for her and she screams when you try to tape them back on. (ugh)

She also sounds like she has some upper chest congestion, but when the nurse tried to suction her, little to nothing came out. She doesn't have a fever, and she's eating fine (no vomiting yet!), but she sounds really boogery/congested.

The nurse did say that between 3:30-5 this morning, she was able to turn off the O2 and Scarlett did okay (she was sleeping of course), but as soon as she woke up, there they were in the 60s again. So, she had to turn it back on. We'll see what the docs say in rounds today.

Oh yes, one last thing, her 'site' looks great. Laura took off the pressure bandage last night around 10:30pm and of course Scarlett didn't like it, but it looks so much better than I thought it'd look. yay! :) I took off her silly oversized hospital gown and put her in a onesie. Here is a pic of her and Laura I took this morning.

Wednesday, September 9, 2009

Great Heart Cath

I don't know why I was so worried, because her cath went really well today (Thank You God!). We arrived at 8am, checked in, then went up to the 2nd floor... registered with them, they took her vitals put her in the signature "sleepy tiger" peds hospital gown, and attempted to do a blood draw. I warned the nurses that her veins are weak (non-existant and bone dry), but they insisted on trying before sending her to the cath lab. They tried for 5-10 minutes to find a viable vein (while my poor baby screamed her head off...) to no avail. (I told u.. I said to them). Then it seemed like we just sat around for an hour waiting, waiting, waiting....

Finally hospital transport arrived and walked us over to the cath lab...where we waited, waited, waited. Then the anesthesiologist came in and talked to us... then finally Dr. Pophal came in and talked to us. Then they took my baby and said they'd page us on the Olive-Garden-type buzzer/vibrator/pager thingy when she comes out of the lab. They said it could take up to 4 hours. We waited in the waiting room.

About 2.5 hours later the pager/buzzer started beeping and buzzing. Both Todd and I jumped up and practically RAN out of the waiting room toward the cath lab... we even left our stuff in the room (with some very honest good samaritans who promised to keep an eye on it for us), just to rush over to see our baby. But there was no one around? No Dr, no baby, no nurses... what the...

Then finally here comes the Nurse Practitioner who says that she's still intubated and is coming off the vent slowly, but that Dr. Pophal will be in shortly to let us know how it went. We're both on pins and needles at this point. FINALLY in strides the handsome Dr. Pophal and he proudly tells the story of what he did, happily shows us pictures, and carefully, and reassuringly explains everything to us. Of course to me, I'm still thinking, "huh?"...maybe surgery, maybe another shunt..maybe full repair... collaterals, coil..arteries..leg might be gray, voice might sound different.. It was a lot of information all at once and too much to memorize.

Long story short...They were going to do the full repair in the next 2-4 weeks, but now, Dr. Cleveland might want to do another shunt surgery to allow one of her pulmonary arteries to grow since Dr. Pophal coiled off one of the collateral arteries which may have hindered the growth of another pulmonary artery. Confusing? yes. But I will know more info on Tuesday when Beth, Dr. Cleveland, Dr. Nigro, Dr. Pophal, and the other cardiologists meet.

In the meantime, My little Scarlett slumbers peacefully next to me in her hospital crib. She's doing great. She drank 4 oz of pedialyte earlier today and kept it all down. Then around 6pm, she ate 3 oz of milk (fortified, thickened, BM) and again at 7:30pm she had around 2 oz more with her 1/4 tablet of aspirin. Here are some pics of her I took today. Thank you for your continued prayers and well wishes. :)

Tuesday, September 8, 2009

Heart Cath Tomorrow

Well, it is the night before Scarlett's cardiac catheterization and I'm feeling positive. I called the Pediatric CardioThorasic Intensive Care Unit (PCTICU) at St. Joe's to ask several questions about our stay tomorrow mostly focusing on breastfeeding stuff. I wanted to know: do I bring my own pump, or use theirs? Should I bring my own bottles, or use theirs? Should I bring my own breastmilk storage bags, or do they provide those? What about Nutramigen? What about Simply Think? What about her meds? etc. etc..

I decided that I'm just gonna take my own pump, my own bags, my own bottles, nipples, thickener, formula (for fortifying my BM), and her meds. I have my own special utensils that I use to crush her 1/4 aspirin (including the pill cutter, a teaspoon and a baby spoon for crushing). I recall the first time that the hospital didn't have a pill cutter or any sort of equipment for crushing her aspirin.

I packed blankets, socks, clothes and a portable DVD player for Scarlett. then clothes, socks, sweater for me because I remember how cold they keep the PCTICU. I know it's only for 2 days (and they might even send her home tomorrow!), but I have a lot to take with me for Scarlett even for a single overnight stay.
I have spent the night at my sister's house one time since Scarlett was born, and I had to pack all her stuff then, so I'm just doing that again. It's kind of pathetic that I can fill an entire suitcase of stuff for me and Scarlett for just an overnight much more will I need when she has her actual surgery?

We have to check in at 8am tomorrow. Her procedure is scheduled for 10am. (in 12 hours).Nothing by mouth after 4am. I'm starting to get a lump in my throat because I want to cry....but then I think why am I crying? She's gonna be fine!...but then part of me is still worried about the "whatif's".

The cath lab is reserved for 4 hours. I don't know if that's normal or not. Dr. Pophal has to go in, inject her with the dye and watch how well (or not well) the bloodflow is in her arteries. He is also going to cut off some Multiple AortaPulmonary Collateral Arteries (MAPCAs) if he has to, or bind them together and relocate them...he won't know until tomorrow when he goes in.

The PCTICU nurse said that Scarlett will be on the ventilator during the procedure. So she'll be intubated when she comes out of the cath lab. I also called another breastfeeding heart mommy (Radhika) and asked her about what she did with her BM when her son was getthing his heart cath. I still think it is so awesome that I have an entire network of heart mommys at my convenience. I am reallly blessed to be living in 2009. Well, I will post more before/during/after her heart cath. Good Luck baby girl... you'll do great, I just know it.

Monday, September 7, 2009

History (Single Umbilical Artery)

As usual I’m up at midnight pumping. And as usual, I’m reading heart mom blogs… So tonight I was reading Santiago’s mom’s blog (Tammie Bernal). Her son has trisomy 13 and she knew nothing about this. From what I could gather, she also had a two vessel cord (Single Umbilical Artery) like me. Also, like me… she wasn’t allowed to see her child for hours until after she gave birth. So, her blog/story inspired me to write a little more about Scarlett’s early days, and the pregnancy days since some people might not be familiar with it.. Here it goes:

I had a very eventful and rough pregnancy. First of all, Scarlett was unplanned. She was a surprise, although a welcome one. Early in my pregnancy, I started having major drama at my work (revolving around my supervisor). Around 14 weeks, I started getting major abdominal pains. Sharp, shooting unbelievably painful upper abdominal cramps. If I didn’t know better I would swear they were contractions. Around this time I also lost 100% of my appetite. I knew I had to tell my boss I was pregnant, but the tension between us was so great, that I didn’t want to tell her, so I kept it a secret as long as possible.

The pains didn’t go away, and the appetite never returned. I assumed it was stress related caused by my supervisor. Finally I called my OB, described the pains and they wanted to see me that same day. I was losing weight instead of gaining weight. My OB (Dr. David Greenspan) ordered an abdominal ultrasound to check my gallbladder for gallstones. A few days later I had the u/s and sure enough I had gallstones. Dr. Greenspan scheduled a surgical consult with Dr. Petelin (St. Joe’s). During the consult, I was crying the entire time. I was so depressed from work stress and at the thought of going under the knife being 17 weeks pregnant…of course there was the thought that I could lose my baby. :(

I had my 18 week comprehensive/level 2 ultrasound scheduled with perinatologist Dr. John A. Garbaciak (Perinatal Care Associates) for the week after my gallbladder removal surgery, but I had to reschedule for obvious reasons. They were able to see me the day before my surgery. I found out I was having a girl. I also felt her move for the first time that day.

About 2 weeks after my gallbladder removal surgery, I went to see Dr. Greenspan (my regular OB) for my monthly appt. I still hadn’t gained any weight, but I was doing a little better post-surgery. He said my level 2 u/s came back fine, but that I had a Single Umbilical Artery, but that it was nothing to worry about. I immediately worried anyway. What the heck is a SUA? Why don’t I have a “normal” umbilical cord? What could possibly be wrong with my baby? He said that sometimes SUA is associated with birth defects, but that my baby looked fine, so don’t worry/stress too much about it.

Dr. Greenspan said he would schedule a genetic consult with Dr. Garbaciak so that I could ask any questions I had regarding the SUA. I went home that day and cried. Todd also cried. We were worried sick. I immediately got on the internet and started searching for anything and everything I could find regarding a single umbilical artery/2 vessel cord. I became obsessed in finding out everything I could… but it was a crapshoot. It seemed like I had a 50/50 chance of having a healthy baby vs. a sick baby. (it was more like 66/33) (66% chance of having a perfectly healthy baby, 33% chance that there was something ‘wrong’ with my baby). The only thing I knew for sure was that I was at an increased risk of having a baby with a birth defect (usually effecting the heart or kidneys).

I researched for 3 weeks before my appt with Dr. Garbaciak. I had a list of 25 questions I wanted to ask him. I read blogs about mothers who had a SUA. I read the good, the bad, the ugly. One mother’s post in particular had me in tears and scared to death. Her son was born with a problem with his intestines and died within a week of being born.. and it was a result of her having a SUA, which no one informed her of. This mother urged parents to research all they could and to get early intervention if need be.

For 3 weeks, I read about common pregnancy complications for SUA including trisomy 13, 18, 21, heart defects, gastrointestinal tract abnormalities, problems with the central nervous system, lungs, kidneys, musculoskeletal system. I also read that in addition to genetic or chromosomal abnormalities, I had a 20% chance of having a baby with IUGR (intrauterine growth restriction), and the risk of low birthweight, premature delivery, or stillbirth. Talk about STRESS!… Now you see why I was crying for those 3 weeks before I met with Dr. Garbaciak.

I met with Dr. Garbaciack on October 30, 2008. Before my genetic consultation with him, I had another ultrasound (the second performed by his office). The u/s tech said that the baby would not get into a good position for her to take good pictures of the heart. She said she got ‘some’ pictures, but that Dr. Garbaciak ‘may want more’. So Todd and I went in to the elusive Dr. G’s chambers for our consultation regarding the SUA.

Dr. Garbaciak was so nonchalant about my worries/concerns/fears. He was completely unconcerned about the SUA and seemed annoyed at my 20 questions. He cared more about the fact that 1.) I was at a higher risk for having a baby with Down Syndrome and 2.) I was at an increased risk for developing pre-eclampsia again.

He seemed more concerned about those two things, than the original reason I went to see him that day. He said I had a 1 in 450 chance of having a DS baby, but that the only way to know would be to consent to an amniocentesis. I said no way. I wasn’t going to risk losing my baby just to find out whether or not she had DS. I asked him about the pictures of her heart. I said “The u/s tech said that maybe you might want her to take more pics of her heart…”, and he said “everything looks fine/good, I saw what I needed to see”. I asked if he thought I should get an echocardiogram and he said ‘if you want one, Dr. Greenspan can order one for you’.

I had gone to this October 30th appointment with Todd, and I actually told my supervisor about the SUA, because I thought I was going to be getting bad news. I told her that I might not come back to work that day if the appt took a turn for the worse. (Because I knew I had an ultrasound scheduled that day which might have revealed a birth defect.. like uh.. HER HEART maybe?!) I left Dr. Garbaciak’s office a teeny tiny bit relieved about the SUA, and now I was worried about the pre-eclampsia and a DS baby.

One week later I had a follow up with Dr. Greenspan. He said “I got the report from Dr. Garbaciak…everything looks good, but you’re at an increased risk for trisomy 21”, and I said “yeah”, and he said “Do you want me to order an echocardiogram”, and I said “Yes”. I went down one floor (in the McAuley Medical Bldg) to the Scott & Laura Eller Congenital Heart Center. I made my appointment with Dr. Alboliras. Still thinking that everything is fine and I’m just a neurotic worry wart.

Obviously we all know the outcome of that first fetal echocardiogram. WORST DAY OF MY LIFE. I should have seen it coming, but I really thought that everything was fine with my baby. (for more info regarding that day, read below on my blog under “My Story”).

What is not commonly known is that about 2 weeks later (after I knew about Scarlett’s heart defect), I went back to Dr. Garbaciak’s office for a growth ultrasound. The tech didn’t read my chart, didn’t know I was at increased risk for DS or pre-eclampsia, and OBVIOUSLY didn’t know about her heart either. She did the ‘routine’ growth ultrasound making menial small talk with me. She obviously didn’t see the tears streaming down my cheeks when she concentrated on my baby’s heart during the u/s. I asked her when she was done… so everything looks fine/normal?, and she said “yes”. And I said ‘Everything? Even her heart?”, and she said “yes, everything looks good”.

I casually got up (she was finished already), got dressed, picked up my purse and just before I left the room, I told her “I just wanted to let you know that my daughter’s heart is Not Fine. She has a major congenital heart defect and will require open-heart surgery in the first week of her life, and you just told me she is fine and everything looks okay… you might want to read your patient’s charts before you examine them”.

Be assured I never returned to Dr. Garbaciak’s office again, and to this day I have resentment and bitterness toward him and his incompetent staff of ultrasound techs. From that point forward I was seen my Phoenix Perinatal Associates for all my non-stress tests, biophysical profiles and subsequent growth ultrasounds.

One last thing about my wonderful OB, Dr. Greenspan… The day Dr. Alboliras delivered the devastating news to me, he faxed Dr. Greenspan and Dr. Garbaciak the echocardiogram results. That evening at 6pm, Dr. Greenspan called me at home to tell me how sorry he was, that he had just read the report and he had no idea that this would be the outcome. It makes me cry even now how caring he was/is. He said if I needed anything that I could have him paged directly and that he honestly didn’t see it coming and that he was there for me to offer any support I needed. He is such a wonderful and caring man. I LOVE HIM! Dr. Garbaciack on the other hand, also received the same report… and do you think I ever heard from that bastard again? No. Not an I’m sorry.. not an I’m here for you.. nothing. I hate Dr. Garbaciak. 3 ultrasounds (one at 17 wks, one at 22wks, and one at 26 weeks and none of them saw Scarlett’s heart condition.)

Okay, that’s all for now. More to come on Scarlett’s first days in the hospital. Thanks for reading!

Saturday, September 5, 2009

4 Days Till Heart Cath

Today is Saturday, and Scarlett is supposed to go in for her heart cath on Wednesday. I've been reading heart-mommy blogs lately and getting worried about things that could go wrong in the cath lab. I'm also making comparisons of my mom's angiogram and the complications that occured at the insertion site (huge blood clot), and the subsequent problems she's had as a result of her cardiac cath.

I'm trying to be optimistic, but sometimes fear and worry get the best of me. Scarlett's babysitter got sick on Wednesday afternoon, so when she went home for the day, I told her not to come back on Thursday if she was still feeling bad. She sounded pretty congested/runny nose, etc. I have been VERY fortunate with Scarlett's health thus far. She is six months and three weeks and has never really been sick. There was the one time she had a mystery fever and I had to take her to the ER, but that was kind of her only symptom. No bad diarrhea, no uncontrollable vomiting. She's never had a cold (sneezing, runny nose). So I hope and pray everyday that she doesn't get sick before her next surgery.

So, like I said, I've been staying up late for the past couple of nights reading blogs of the heart moms (that I met through my cardiologist group) who have lost their children. I read their blogs all the time, but it's usually only the 'current' posts. But this time, I went backwards in time (blog-wise), to the time when their child was born, had their heart cath, had their heart surgeries, had complications, and finally the last days/hours of their children's lives. I read the posts about the funerals and the days immediately following. I feel soooo sorry for these mothers. They have such strength and grace and they are so amazing. Each time I read another blog, I'd sit here crying silently to myself. I cannot even begin to think about the unimaginable pain they must be in. I thank God everyday I have Scarlett in my life, but knowing that these brave women have the courage to persevere may make it endurable if God chooses to take Scarlett back (whether after complications from her heart cath, or during/after her next surgery).

For now, I just treasure my precious moments with Scarlett and Violet. I love my children sooo much and I am so lucky and thankful to be a mother.

Friday, September 4, 2009

Sitting Up!

Todd called me at work today to tell me that Scarlett had been sitting up on her own a few times throughout the day. I was so excited. I came home and tried out for myself, and sure enough, there was my adorable little heart baby trying her best to sit unsupported. She tipped over only a few times, but for the most part, she was doing great at sitting up all by herself. Go Baby Girl!!