Thursday, October 11, 2007

NOTHING CAN KEEP HER FROM SMILING:The story of Natalie's first heart surgery.

Natalie's sweet smiley face on 10/8/07...NOTE: 1 week! after surgery... her scar is actually really neat to see. The surgeon that completed her operation did an absolutely amazing job. The stitches in her chest are disolvable (the two tiny spots with stitches aren't and those are from the draining tubes which I'll explain more further on). The amount of tiny stitches in her chest has to reach the 100 count mark. And by now, most are probably dissolved.
Sooo! Here we are.. a little over a week later after Natalie's open heart surgery. Oh! and just as a quick warning, this post may get pretty long. So if you've got the time, then feel free to read on. ;)
This post with pictures will go backwards throughout the surgery. Ricky and I sat here for a little bit, deciding whether or not to even post some of her post-operation pictures. The biggest concern was making something so personal so public. But then we both realized, some families going through what we are going through and may soon go through need to see these! It's a situation that's pretty scary that ends up being joyous. We cannot get over how quickly Natalie made it through all of her "phases" of recovery during her hospital visit, and she still amazes us now that she's home. We joke that she's been modified to Natalie She was wonderful before the surgery but even better now.
The operations consists of having to actually crack open the breastbone to get to the heart (I know ..the idea of that didn't settle too well with us at first). Also, her heart has to be stopped for a total of 5 minutes. Yeah.. that didn't settle well AT ALL with me..but I knew that they had to do what they HAD to do. We left it to the brilliant surgeon and doctors. Her heart also, was in fact opened up so it qualified for an actual OPEN heart surgery. A heart and lung machine is what keeps the body alive and well while the rest of the surgery is completed. It also allowed Natalie's body to rest so she didn't have to do the work. The most of this post also explains in simple words exactly what her condition is. Even after posting something like that months and months we still get lots of questions the main one being, "exactly what is wrong with her?" I'm not sure how many people out there are familiar with how the heart works but here's a great and simple picture of a normal heart:

The most basic way to describe this photo is that the purple area is non-oxygenated bloodflow and the red colored areas are oxgyen rich. Our hearts pump blood through the heart that makes it way to the lungs and then back again. This is how we survive. Now, Natalies' heart is technically just a left sided heart. A general term or syndrome to describe her condition is "Hypoplastic Right Heart Syndrome) or also known as HRHS. Her right side doesn't really work and the Glenn Shunt surgery allowed her heart to not have to work so hard like it was beginning too. This is why her pulsox numbers were starting to get lower and lower each week. And with the surgery, the left side was alleviated a bit from having to do most of the work. And to also allow a bit less purple and red (like shown in the picture above) to not mix as much. In regular terms and when our hearts would work normally, red and blue blood aren't supposed to mix, but Natalie's does. She also was born with no tricuspid valve. It's actually completely closed and that's a main area that would usually let blood flow through. Hence (lol..haven't used that word in a the term "Tricuspid Atresia".
Here's a photo of what her heart looked like before surgery:
Notice the opening in the bottom ventricles? That's her "VSD" which means "Ventricular Septal Defect". And the opening on the left where it says "opening between atria"? That's her "ASD" which means "Atrial Septal Defect". These two defects are typically present when a baby has her type of condition. Without those two other defects..well... Natalie would not be here. We hate even thinking about that..but it all worked out. What's so amazing is the fact that she was born with those two other defects, well, those helped save her life.
Okay.. confused yet? Oh and I'm posting all of this in detail because it all CAN get so confusing. Trust me, just when Ricky and I have opened up "Grey's Anatomy" we end up with a million questions. lol But after all of this, her surgery, catheterization and all, we feel like we understand the heart alot better. (I should have paid more attention in school when we were taught about the is a photo of what Natalie's little heart looks like now with her "Glenn Shunt" which is also called a "bi-directional Glenn Shunt":
The term "palliation" means in my silly wording to "sort of fix". Because no baby born with a severe CHD can be cured or fixed, shunts and other procedures can be done to help out the heart to add years to someone's life. And in Natalie's case, probably many many years.
Okay, with the above picture, look at the area where it's stitched. Natalie's "superior vena cava" and "pulmonary artery" were connected. With this, instead of blood being routed through her right side of her heart, it is now detoured to go directly to her lungs to be oxygenated. There is no gortex tube/shunt or anything.. the shunt was already a part of her heart! Natalie's operation also consisted of having a band put around the rest of the pulmonary artery.. which is simply called a "PA band". This is wrapped around the pulmonary artery to alleviate blood pressure so she has a nice even flow throughout. With this, her lungs and heart don't have to overwork. A nice balance. Here's a photo of the "PA band":

Here's a great textbook definition of the "Pulmonary Artery Banding" procedure:

Pulmonary artery banding. Although the procedure is uncommon, your baby may require pulmonary artery banding if too much blood is being pumped to the lungs through a ventricular septal defect. Placing a band around the pulmonary artery limits the amount of blood that can flow through it. Banding protects the pulmonary artery from damage caused by excessive blood flow.

So, in Natalie's case, the catheterization procedure that she had done a week before her surgery showed that she did, in fact, have too much blood flowing through her VSD. Sounds like it was a pretty good idea for her to have gotten that cath., huh? ;) And a really good idea to get the PA band. And in her recovery, the surgeon warned us that she'll have some pretty nasty headaches from the increased blood pressure.

Okay.. so with all of this posted to describe her condition (hey! You've passed Heart:101).. here is another photo of Natalie! And remember, these photos are going in reverse- from her being home now to the night before her surgery..we just felt more comfortable doing that so you don't just open up this post and BAM! a scary looking photo with Natalie looking not so good..

Here's Natalie recovering in "Intermediate Care" at Hopkins on 10/4/07. This is the night before we got to take her home! =) She also got a bath before all of this. She looked pretty confused while getting it. lol And please know, Natalie was on some pretty heavy painkillers at this time. And actually, in this photo, she had just been given a dose of "Oxycodone" which was a step down from the really hard stuff- "Fentanyl". So, in all of these pictures, Natalie feels no pain or discomfort.

A blurry picture of me getting to hold Natalie for the first time in almost 5 days. And by this time she only had one IV in her hand, but it wasn't hooked up to anything. It was there in case of emergency- pretty standard procedure in the intermediate level. As far as any other tubes/wires..just 3 suction cup looking "thingies" on her chest and red pulsox band around her big toe all hooked up to this computer for monitoring:
I took bad pictures that night. lol Sorry!!! The little note attached to the monitor basically says that her oxygen saturation levels should always be between 75 and 85% or higher, never lower. And something interesting we learned from the doctors: if a saturation level goes very quickly jumping to let's say, 69% and then right back up, it's actually normal! That just means that for that very second, Natalie's lungs were cooperating and resting right before taking another breath while sleeping. If a low number lingers though, that's when you have to be concerned.

Here is Natalie on early 10/4/07 right after getting her "chest tubes" taken out (and a day after the scar dressing was removed):
Here is a great definition for the (kind of gross, yes.. but so essential) chest tubes:

"A chest tube is a hard plastic tube used to remove air, blood, or other fluids from a space that exists between your lungs and chest cavity. This space is called the pleural space. When fluid or air collect in the pleural space, the lungs can't expand the way they should. This makes it hard for you to breathe. A chest tube is placed to remove the fluid or air from the pleural space allowing you to breathe easier."

Natalie actually spent a whole extra day in the PICU (Pediatric Intensive Care Unit) because she still had some fluid draining out of her right side tube. She had two tubes for each side of her lungs and heart. The tubes dangled down to the end of her bed into this odd device that helped slowly suction it in and keeping things sanitized. Very strange. But they helped get her better fast. The removal of these was so hard to watch. I still can't believe I watched them do it. But I didn't want Natalie there without me!! She did cry alot, but hey, no amount of Fentanyl could make you not feel that. But she probably only felt a small fraction of the real amount of pain. Thank god. And when they removed, the doctor was very impressed with how small the tiny holes in her skin were. She was right! She barely even bled. That made watching a leeeetle bit better.
She also had a temporary pacemaker wire put in for "just in case" reasons. Yeah, I know. Very comforting. But as sarcastic as I make that sound, it did make us feel good that they took extra measures. The wire for that was also removed right before the drainage tubes. (ouch..poor Natalie).

Here is Natalie looking very swollen on 10/2/07:
This really took me by surprise when I saw her that morning.
But, alot of people told me to expect this type of swelling because it's normal after such an invasive surgery. Her kidneys and chest tubes were taking care of all of the extra fluid, so I kept telling myself that it was all okay. All Ricky and I did was keep smiling at her when she would wake up for very brief periods. It was hard to do that, but we had to. Plus, seeing those blue eyes periodically made us feel better.

Here's Natalie right after taking off the sticky black things off of her forehead. Oh and she's holding her daddy's finger! Oh and those sticky things were pretty annoying. They were some experimental thing made by a student.. I would go into detail as to what they do or did during her surgery..but they sounded kind of useless. Well, useful for taking off forehead hair! We were very thankful that Natalie didn't feel them get removed).
And here is Natalie immediately after arriving in the PICU after surgery!! We noticed right away how rosey her cheeks and lips were and how her hands and feet were no longer purple tinted!!! We knew right away that something amazing was just done for her. I think that's what made us feel at least 5% more at ease. She also has a breathing tube here and that as kept in until 5pm that same day so her lungs and heart could rest further. Once it came out, she breathed on her own with no problems at all! In fact, that night she drank 20!!! ounces of Pedialyte and then began eating formula the very next day. Everyone kept saying how unusual that is to happen because babies usually don't want to eat for a few days.

I think the hardest part of the whole process was watching Natalie not be "with it". My sister said it perfectly, she would look at you, but not really LOOK at you..just off in the distance and over your shoulder. But we just kept reminding ourselves that she knew we were there and we wanted her to see us smile as much as possible. The PICU is not a pleasant room. It's actually really depressing. Even the nurses, doctors, and students would comment on how beautiful Natalie was and how she appeared to not even have to be there that whole time. And how she's the "rockstar" of the floor. lol
The easiest and coolest part of the whole process was witnessing each tube and wires and bandage come off every single day. And seeing proving of how resilient Natalie is. And how babies in general are that way! Each day, a handful of those types of tubes and wires would go away forever. The best feeling. And that's when we knew for sure she was coming home soon. The doctors would casually mention how "oh she may be coming home this weekend!" but we never wanted to get our hopes up. Because realistically, yes she was doing great, but we didn't want to rush her recovery. Once Thursday and the move to the Intermediate floor came, it was the coolest thing. We knew then that these doctors weren't kidding! She was actually going to be coming home! With that level of care, there's not much they do.. the check her vitals every 4 hours, give medicine..and that's it. When she got there that day, the nurse was even confused as to why Natalie was even there.. that she didn't need to be! But, she better off taking a break from the PICU still being in the hospital before handed over to two nervous parents ("how do wer hold her? uhhh... oh boy.. why is she crying again? Oh..she's sore! What do I do?? Natalie, are you upset that you can't eat your hands? awwww")
And we are incredibly proud to say, Natalie has at least 2 years until her next surgery. And many less visits to the cardiologist is in the near future. And probably every cardiac related person in that area of the hospital knows who she is because to put it in the words of one of the Hopkins doctors- "we don't see patients get better so quickly after this type of surgery, EVER".
For now, we are so thrilled to be able to genuinely enjoy her..and not worry as much as we have since she was 2 weeks old. We joked that Natalie has been "reborn" because of her surgery. I think as her parents we've been allowed to calm down, breathe the biggest sigh of relief ever, and look forward to every single moment with her. Let more fun begin! ;)


Elizabeth said...

She looks so GREAT!!! I am so happy that everything is going well. Please let us know if you need anything, otherwise let's get together soon!

eipwek said...

Thank you so much for taking the time to post such a detailed description of Natalie's condition. It was really awesome to read all the steps of her surgery and how she recovered so extremely fast! That is awesome.

Leanne said...

What a tough little cookie you have there. Wow!

I can only imagine how emotionally trying this was on all of you. Natalie is lucky to have such a loving and optimistic family. Big hugs to all of you! Glad all went as incredibly well as it has. So wonderful. :)

Anonymous said...

Thanks so much for posting this information - my 5 month old is going in for VSD repair in two weeks, and it was really helpful for me to see what she will probably look like when she comes out of surgery - I can be better prepared mentally this way! All the best for natalie - I hope she's doing well.