Zoe Grace: Meltdown

At 11AM this morning, I found myself sitting in yet another doctors office waiting room feeling surrounded by germs.  My approach to germs has drastically changed since Zoe came into the picture.  Sometimes I feel borderline germiphobe.  Yes before Zoe I made sure that mine and Londyn's hygiene was in check and we washed our hands regularly, but now I carry at least one if not two bottles of hand sanitizer at all times.  Sometimes I wonder if people see me as too snooty-falooty to share my child with them because I am so hypersensitive about having people near her.  In the last few weeks we have had several encounters where complete strangers have come up and grabbed her little hands, patted her back or just stuck their foreign face right in hers.  Not cool.  I know people mean well and just want to get in on the cutest baby alive, but seriously... it amazes me how some people think it's totally okay to touch an unfamiliar baby in the middle of the clearance racks at Target, while waiting on our table at Rose's or in the produce section at the market.

For those that are Big Bang Theory fans... I often feel like Sheldon at the hospital.

Back to Zoe...

Our first appointment of the day was with Dr. Rollin, our pediatrician.  I just love her and am so sad that this was our last and final appointment with her, as she is moving too far for us to see her anymore.  Luckily, we will be switching care to a pediatrician named Dr. Kao, who is a former Neonatologist and fairly new to the Sherwood Providence clinic.  After Zoe's exam with Dr. Rollin, she introduced us to Dr. Kao.  Apparently Dr. Rollin has already been keeping Dr. Kao up on Zoe's case, which is a huge relief.  I feel much better about the switch and feel confident that Zoe is in another pair of great hands.

Zozo weighs... drum roll please... 11 lbs 1 oz.  Way to go ZOE!  She has inched up to the 10th percentile, which is a huge feat for a baby who was in the 2nd percentile just 2 month ago.  We decided to bring down her high calorie diet from 27 calories per ounce to 24 calories per ounce because she constantly has a very painful diaper rash which we believe to be the result of her constant poopy diapers.  She will continue to get 700 mils per day at 35 mils per hour by enteral pump.  I asked Dr. Rollin about the bit of bleeding from the site of Zoe's G-Tube and she said that it isn't abnormal, especially because she does tug at it sometimes but if it persists, to call our gastroenterologist.  As for length, Zoe has reached 23 inches.  We are scheduled in three weeks for a 4 month follow up with Dr. Kao and she also mentioned starting weekly RSV vaccinations in the Fall as Zoe is very susceptible to RSV which she absolutely cannot afford to catch.

{Zoe gives her weight gain a thumbs up}

Fortunately our pediatricians office is just two minutes away from home, so I stopped at home for 20 minutes and then headed out the door to the hospital for our appointment with Dr. King, our cardiologist.  I have been so anxious about Zoe's heart lately as I keep hearing about parents and families who have lost their babies to congenital heart defects, similar to Zoe's case... if not the exact same.  I know these poor families need support, but I just don't have it in me to give it or hear about it right now.
After Dr. King did an echo, he gave me the news that her Atrial Septal Defect (common AV valve) has worsened and is leaking more than before.  We have known from the beginning that the leakage could potentially hinder her from having either of the two remaining surgeries needed to allow her right ventricle to do all of the work properly.  Dr. King said that the Glenn procedure (2nd surgery) sometimes has a chance of repairing the leak on its own because the right ventricle isn't working as hard, allowing for no leak to occur.  If it doesn't repair itself after the next surgery, Zoe will no longer be a candidate for the Fontan (3rd and final surgery) and will then only have the option of transplant.  I get so emotional when I think about transplant because it is not only a very risky operation for our child but also heartbreaking to think of the price that is paid for the transplant to even take place.  I can't even begin to wrap my brain around the idea that my child's life could be saved, only for another mother to lose her very own.

To top this all off, Dr. King also informed me that Zoe's right ventricle isn't functioning as well as it was a month ago and he thinks it is the cause of her stroke.  Considering her right ventricle is all that she has, this is a terrifying discovery.  Since the stroke, I have been more concerned about the developmental delays that could result, but never once thought it could be damaging to her already struggling heart.  The most numbing part of it all was when Dr. King told me that if the damage to her brain is too severe, she would not be a candidate for a heart transplant.  We will see him back in 3 weeks for another echo and schedule her next MRI and open heart surgery 1-3 weeks after that..

I walked out of the office holding back tears.  By the time I was on the freeway, it was waterworks.  If my sleeping baby hadn't been in the backseat I would have screamed.  I wanted to scream at the top of my lungs... WHY??!!  When does she get a break?  When do WE get a break?  Every day she is uncomfortable and her body works so hard to just be.  She has purple polka dots all of her legs from the shots we give her twice a day.  She has a tube sticking out of her belly and a feeding pump that follows her around like a shadow.  She takes more medications than a drug addict and breathes about as hard as a marathon runner, even when she's asleep.  My entire being just aches to take it all away from her and I can't.  I know she is a fighter and has endured so much in her almost 4 months, but I just wish we could leave one appointment with the doctor saying "Everything looks great!  We'll see her back in about 6 months."  Instead, I always feel more overwhelmed and scared than I did before.

I am typing right now with the most beautiful view of a perfect and precious sleeping baby.  In my heart and soul, she is absolutely flawless.  At this point, all I am running on is love.  Love for my baby... love for my eternal family... and love for my Father in Heaven.  She is and has been the greatest miracle I have ever known and I have to believe that she will make it through all of this.  WE will make it through all of this.

1 comment:

Nicole Heiner said...

Oh Kacie. I don't know how you remember all those details to write them down. I would be so flustered that I wouldn't be able to think straight to remember anything! To me that is evidence that you are meant to be her mom. You hold yourself together so well just for her. You are so selfless. We still pray for you and keep you in our hearts (: I know what you mean about sheldon......i would be the same way, you have every right to be that way. I am also so sad about dr. rollin leaving, anna loves her. we love you zoe!