Wednesday, August 5, 2009

Those Single Moments...

They're so bittersweet. It could be a smell, an article of clothing or a certain toy, a shift in the air, or a song on the radio, and all of a sudden I am right back in the middle of it all. All the hospital stays, all the uncertainty, that fear that just won't leave you alone, back to Ava being this very sick, very small baby whom we barely knew at all but loved so deeply and dearly it hurt. Right back to the memories of not only Ava being sick and in pain, but seeing her big(but still so little) brother PAINED by witnessing all of what his sissy was going through, and only being able to fully comprehend a small percentage of it.

I generally pride myself in "staying strong", "focusing on the positive", and "staying thankful for the blessings", and I am not sure anyone can fully understand what effect this has had on us, as her parents, as her siblings, etc, unless you have been there. That's not to say they don't try, though. I have a wonderful circle of friends. But sometimes, I am overwhelmed, and I ride it out. I get sad, I get scared, I get confused, I get ANGRY.

CHD is a terrible monster affecting so many of our children, and there is NOTHING we can do to prevent it, there is NO cure, our kids are helpless to this disease. It robs so many children of a "normal" childhood, it steals so many things we take for granted.

When Ava was so small and fighting to breathe on her own and to thrive and survive, we were told to expect this from now, on. That she might never have that "normal" lifestyle. She may always need oxygen/cpap, she may never eat orally because not only of her vocal chord paralysis, but all the side effects from DiGeorge and being intubated as many times as she had/has. She may never be that happy baby. We should expect a life of ER Visits, isolation at home for fear of anything even as small as a cold bug landing our daughter in the hospital hooked up to a million machines struggling to fight off the infection, continuous feeds from a machine through a tube straight to Ava's stomach, a loud CPAP breathing machine to make sure Ava doesn't have any sleep apnea or lung collapse issues, possibly never reaching many milestones, numerous weekly doctor visits, and even more therapist visits.

Ava was diagnosed at birth with multiple congenital cardiac defects, including large ASD and VSD, an Interrupted Aortic Arch, and Left Ventricular Outflow Obstruction, or as her Cardiologist says, in short HLHS. Ava has had two open heart surgeries. The original plan was three corrective surgeries.

The first surgery was a modified Norwood taking place when my daughter was exactly one week old at UCSF Children's Hospital, and was complicated by a stroke that occurred in the OR. This first surgery was about 6 hours. The above photo was taken the night before her early AM surgery. The post surgery recovery was very bumpy. Because of Ava's DiGeorge diagnosis, we were not only dealing with her heart recovery, the vocal chord paralysis, GI issues, but also severe calcium issues, etc. Ava was three weeks early, and had lung development issues, as well. The scene immediately after this first surgery is something I will never forget, though I wish I could. I couldn't even see my tiny baby, she was hidden behind machines, behind many, MANY nurses and doctors working hard to stabilize her. That first night was very rocky, and very scary. The photo below is 2 days post-op. I still can't bring myself to post photos any sooner after surgery than that...

Recovery was going somewhat well at UCSF, though what they say about 1 step forward, 3 steps back rings very true for our heart babies. Soon we were in the "step down" unit, which is where the focus is on parent's learning all they need to do before discharge and nurses are there to basically "assist" when needed.

Dad found ways to entertain himself(and numerous nurses) during those long, monotonous days at the hospital, he gave his daughter Mohawks with the hand sanitizer gel!

Soon Ava was stable enough to transfer back to UCDavis Children's. Where we spent NUMEROUS weeks. There were many reasons our stay at UCD was extended by about 2months, frankly half the reasons I still don't fully understand, the other half sort of still upset me too much to speak fairly of, so just know that there was a small handful of nurses as well as Ava's cardiologist that took amazing care of Ava while she was there, always had our backs and Ava's best interest at heart, and we are forever thankful to THEM. A few photos of Ava's UCD extended stay...

The last photo is the day Ava was finally discharged, for good! It was also my son's first day of 1st grade, a very joyful day all around!

The plan for that was to let Ava show us when she would be ready and in need of her second corrective surgery, a modified glenn, which many of the UCD staff was expecting to see us by the holidays, or within 6 months. Ava spent the next year at home. As her first birthday fastly approached, so did the signs that she was ready for stage two of the three stage repair. We were able to wait until after her birthday and her surgery was scheduled for about a week after her first birthday, or a year after her first surgery. We again made the trip out to San Francisco the Friday before her Monday Surgery for a Cath, Echo, etc. Ava was no longer a small, fragile newborn. She was now a fullfledged curious toddler and it didn't take her long to discover that if she moved that glowing foot(the pulseox) it made the machine over her head chime, which she was quite fond of and giggled over for hours...

The last photo taken after her pre-op cath.

Ava's outstanding surgeon had called us prior to our arrival and we had spoken a few times on the subject of a possible FULL REPAIR. Meaning no third stage and TWO ventricles! He answered our many questions, repeatedly, and let us know this was something he wouldn't know for certain if she was a good candidate for until he had her on the OR table. We were very nervous, but had the utmost faith in this man. Ava's second surgery was close to 9hours long, and was indeed a FULL repair. Something in the beginning of Ava's Journey that was thought to never be possible for our baby girl, had just happened. What a blessing, what a miracle! This time, when I walked back to Ava's little spot in the UCSF CICU, the hall outside her room and the room itself was not full of people in white coats and blue hats. I was able to walk right up to my daughter, and though there were numerous machines and lines, they were quiet. Ava had a single nurse that night, in fact, she had a SHARED nurse that night. Her first night after the biggest surgery of her life, probably ever, and my baby girl was the picture of stable post op patient perfection! Though seeing her immediately post op wasn't necessarily easier, doubt it ever will be.

About 3hours post-op.

Two days post-op, extubated and enjoying a little nap. :)

Always stylish. ;)

So this time around, recovery was speedy and somewhat "bump-free". There was one setback, that was the discovery that Ava was now pacer-reliant. Ava had a pacemaker placed about 10days postop(the amount of time they allow the heart to heal and see if the situation corrects did not..) We were home in about 2.5weeks. Day of discharge...

And while Ava has been and continues to be somewhat delayed in a few milestones(didn't walk until about 19months, still isn't talking much, etc), and though Ava has a bigger entourage(her doctors, teachers and therapists) than most children her age, we have so much MORE to be thankful for. Ava has always been a very happy, very LOVING baby. Those of you who have taken the time to truly know her, know what I mean. This girl could live off hugs and kisses and snuggles and smiles. We have only had one scare resulting in a middle of the night ER visit, and it turns out that actually NOT a big issue(relatively speaking, of course). Ava is never sick, and if she does catch a bug her body does an unbelievable job of fighting it off typically within 48hours(pretty impressive for being born without a thymus, eh?? ;) She is smart, very smart. The kind of smart that frightens parents and teachers alike, that smart. Ava is our little daredevil. If she trusts you, she trusts you 110%. If she gets hurt, she brushes herself off and jumps back up and tries again, with a smile on her face. If she see's a heart, hears the word "heart" or hears someone say "scar" she is instantly tracing that beautiful line down her chest and grinning from ear to ear. She knows her heart is special, and that line down her chest, it's beautiful and something to wear with pride. I hope she always has that pride...

My daughter is a fighter. A warrior. A hero. An inspiration.

Ps- for those who do not yet know, Ava's Heart Catheterization(yes, another one, hopefully the last one in this series) has been scheduled for Monday, August 31st at the UCD Cath Lab. Prayers, good thoughts, and Ava lovins, please!

Pss- If you haven't yet, please please please consider joining us for the American Heart Association's START! Heart Walk coming up quickly on Saturday, September 19th. This is our second year doing the walk, I believe we had about 35 registered walkers, my goal is BIGGER this year! If you cannot physically be there, or even if you can, and are in a position to donate, please do. The link to my personal page where you can join or donate, is below. Thank You! GO TEAM AVA! :)

1 comment:

Carey said...

I love that Ava is so confident about her scar and knowing her heart is special. I want that so badly for Caden as well. I want him to wear his scar with pride!
Thank you for sharing such an emotional, beautiful post about the love you have for your incredible daughter. I can't wait to meet her and get to know her. :)