Zoe Grace: So close.

The following are Facebook updates throughout the day...

Tuesday, August 21st @ 10:44pm
Okay... so I lied. I didnt go to bed early. But now I am rocking my sweet little Zoe and I'd trade this for sleep any day. Especially when I know I won't get to hold her like this... wire and tube free for who knows how long. I love her smell and those chubby cheeks. She is perfect.

Wednesday, August 22nd @ 5:22am
3 hours of sleep and now we're here waiting to be admitted. Its going to be a long day.

{In admitting, so happy for our baby to finally have a healthier heart}

{When our admitting nurse was getting the crib ready for transport, she made sure to have oxygen and a CPR bag.  One of the other nurses asked why she would need those items just to be transported to MRI and our nurse said that she has had complications in the past.  The other nurse asked if it was Zoe and then said "Oh yeah, I was in on the MRI when she coded."  Ugh... little did we know at the time that she was about to do it all over again.  That is the second random nurse that I have heard that from.  Apparently Zoe is well known around these parts} 

Wednesday, August 22nd @ 7:25am
We are now in the waiting room while Zoe is in MRI with sedation. It should be about 45 minutes until we will see her one more time before she is taken to the OR. Breathe in. Breathe out.

{Walking with Lily from transport to MRI}

{One last kiss} 

Wednesday, August 22nd @ 8:21am
Zoe coded during the MRI and was just rushed into the operating room. We just received word that she is stable with a sinus rhythm and Dr. King is doing an echo right now.

Wednesday, August 22nd @ 10:41am
Well the good news is that Zoe is still stable. But the echo showed that her heart function has diminished from the 3rd degree heart block that she had in the MRI. The bad news is that her surgery is being postponed until further notice. They have moved her to the ICU to let her heart rest and recover. When the surgeon tells you that they had to do CPR and "it was dodgy there for a while"... you know it's pretty bad.

{Our sweet lovey in room 520}

Wednesday, August 22nd @ 12:03pm
Thank you for all of your uplifting thoughts and prayers. Zoe looks so peaceful and calm right now. The oxygen support has improved her coloring already. Her sats are running in the high 70's to low 80's with 30% O2. She has been given Ativan to keep her lightly sedated while intubated and Milrinone to improve her heart function. She has been struggling so much these past few weeks that it makes sense for her to need a little "tune-up" before surgery. This sweet baby is constantly teaching me life lessons and with today's events, I hope to learn that good things come to those who wait.

It has been quite a day, to say the least.  After making sure Zoe was okay, I went home... took a 2 hour nap, spent a couple hours laughing and playing with Lulu and then headed back to the hospital.  I should be sitting here in the ICU with my sweet baby and her improved heart, but instead I am sitting here... wondering if the  last 14 hours were just a really bad dream.  Unfortunately, it was all very real.  

After looking back at this entire day, there is actually quite a bit of silver lining in this patch of fog.  It is very clear now that Zoe is extremely sensitive to anesthesia, having now reacted with heart block in the attempts of two MRI's.  They were able to get a central line and an arterial line, which are both extremely beneficial while her condition is more critical.  Those lines will make anesthesia much easier when they do go ahead with her heart surgery in the next few days.  Her O2 sats have been so low lately that it is possible that her body and especially her heart needed some rest before undergoing surgery and especially being on bypass.  Right now she is probably more comfortable than she has been in a long time.  Her body is getting some relief and this resting period can only improve her chances of a successful surgery and recovery.  Zoe is continuously reminding us that we are on "Zoe Time" and that she is running this show, whether we are prepared for it or not.  

As of right now, she did spike a fever of 102.5 this afternoon, which they think is probably an inflammatory response to the heart block.  They are doing a blood culture and a respiratory culture, just to keep their bases covered in case the fever is from some kind of infection.  Although it is very unlikely.  Both her blood gas and acidosis levels have normalized.  She is finally back to her baseline.  Our main concern is the damage to her already fragile brain and heart.  Talk of a possible brain bleed, decreased heart function and increased regurgitation of the common valve have been thrown out there.  At this point, we just have to wait until both organs are tested thoroughly before attempting surgery again.  

I spoke with Dr. King this evening and here is the plan: 
  1. Keep her on Digoxin, Milrinone, Lasix, Ranitidine, Phenobarbital and Lovenox.  D/C Lisinopril until after surgery.  
  2. CT and EEG tomorrow morning
  3. Resume feeds tomorrow morning
  4. Echo on Friday morning
  5. Possible surgery on Friday or Saturday


K kid said...

We will pray hard for baby Zoe! The other upside is that you will practically qualify for a medical degree by the time you are done with this.... :)

Nicole Heiner said...

i love you kacie and have been thinking about you all day. i cried when i read this. your faith inspires me! We are praying for you. Anna always says baby zoe sick, need get better (: she does look peaceful and I'm glad she's got some more time to get her strength up before surgery! I know this is totally irrelevant and possible irreverent - but you look absolutely beautiful in that outfit and with your hair that way. i dont know how you keep yourself together so well! luvs luvs luvs xoxo nicole

Johnathan and Jannene said...


Stefanie Michelle said...

I was going to type almost word for word what the first two comments were. :o)

Keeping Zoe, you and your beautiful family in our thoughts and prayers today and every day. Your strength and faith inspires me.

Love and hugs, Stefanie

Eric and Chasten said...

Kacie I can't imagine how difficult this must be. Yours and Andrew's faith is so inspiring. We are praying for Zoe and your family. Thanks for keeping us so updated!


alisafye said...

Hi Kacie,
My sister Rachel Tanner showed me your blog, and it totally took me back. My son, now 15, has hypoplastic right, transposition of the great vessels, coarctation of the aorta and the septal defect. Dr. King was our doctor, and I LOVE THAT MAN. Dr. John was our surgeon most of the time. I have been there, and it is hard and scarry, but miraculous, too. I'm thinking about you and sweet little Zoe. I would love to talk if you want to. alisafye@hotmail.com
Lots of Love,
Alisa Fye

Kari Bacon said...

I think of you every minute of the day. Your strength is an inspiration and helps me to remember to cherish every moment. Know our prayers are with you and Andrew.

Kari Bacon said...

I think of you every minute of the day. Your strength is an inspiration and helps me to remember to cherish every moment. Know our prayers are with you and Andrew.

Jenny said...

Hi Kacie,
My name is Jenny Burge, I am Jess and Shane's Sis in Law. I just want you to know that we have been thinking about Zoe and your family so much! We are praying for her and praying for a miracle! Your strength amazes me. Stay strong! And know that many prayers are coming your way.