..Life With Zoe..: Good Times!

Saturday, August 6

Good Times!

Today is a great day! I have a huge smile plastered on my face. Zoe is such a rockstar!

Awesome things that have happened since yesterday afternoon:

Zoe did a 2.45 hour sprint from 8:40pm to 11:10pm last night. She slept through the whole thing! B & I hunkered down on the parents couch/bed and watched Taken and Planet Of The Apes keeping an eye on her. What a great way to wind down a long day
Left tube was taken out yesterday (worth repeating)
Lasix was taken off infusion and now given intermittently!
Right Picc line was removed today! I am just beyond thrilled about this. Everyday I ask when it would be pulled and damn I missed it! This Picc has been in since they day she was born and I was so worried about infection. Yea for Picc removal!!!!
X-ray looked much better!
Chyle has left the party!
PEEP was lowered from 8 to 6 this afternoon and she is tolerating it very well!!!
Zoe did another 2.5 hours sprint this morning and did fantastic!
Drum roll.... the right chest tube was just removed! Woohooo! I stood there and watched it. Wow, that was really in there, it was about as long as my hand. Zoe tolerated it very well but they did give her hydromorphone.

What is next? Zoe will be tackling her first 3 hour sprint around 3pm today. You can do it Zoe! After talking to our RT today, he said if she continues like this they will lower her Peep to 4 tomorrow and continue with 3 hour sprints. We can cross our fingers for extubation within a day or two! I am going to shoot for Monday.

Now you can see why momma has a big grin today!

Buh-bye chest tube!

Look mom! No chest tubes and my right Picc is gone!

6 comments:

~C~Saturday, August 06, 2011
Awesome news! Go Zoe!
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ErinSaturday, August 06, 2011
That is such great news!! She truely is an amazing little girl!
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MSaturday, August 06, 2011
Yay Zoe! What a strong little girl.
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Mama BloggerSaturday, August 06, 2011
This whole post is amazing. So happy for you guys and baby Zoe. Keep these positive updates coming!
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alyssaSunday, August 07, 2011
Go Zoe! Go Zoe!
I didn't get to see my son's chest tubes pulled, but I was there when they pulled his PICC. I knew where it went (up his arm across his chest, etc. you know too by now) but it was still very shocking to see just how long that little tube was, how far into my baby. Best of luck with the continued sprints and pressure reductions. Hang in there, sometimes it just takes a little while for their little bodies to get used to the new new and start firing right. And as one doctor was fond of telling me, 'they run on their own schedule, not ours.' Yeah, still hard to accept sometimes though. Go Zoe! Go Mommy & Daddy!
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Kristin CMonday, August 08, 2011
Such a wonderful update! Good job, Zoe!!
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Miracles Do Happen

After years of struggling with trying to conceive, pregnancy loss, infertility, countless day of heartbreak and tears... we learned we were expecting twins August 1, 2011. We thought this would be a perfect story ending, but that was not the case...

Our journey to be parents took us down another road of struggles and battles. On March 1, 2011, at 18 weeks pregnant, Zoe was diagnosed with Hypoplastic Left Heart Syndrome and Dylan with Down Syndrome and Esophageal Atresia. This was absolutely crushing and left us with wondering if there was any hope for a positive future with our children.

On March 25, 2011, at 21 weeks 4 days pregnant, we lost our sweet little boy. Our hearts were broken but we still had to fight for Zoe. I was unexpectedly admitted to the hospital with preterm labor on April 28, 2011. After countless days of trying to stop labor, Dylan was born peacefully sleeping on May 5, 2011 at 2:21 am.

That same morning I was sent to surgery to save Zoe from making a debut. We became a popular miracle at the hospital as labor stopped and Zoe continued to thrive. At 34 weeks pregnant and 8 very long weeks of hospital bed rest I was finally allowed to return home. This lasted exactly two blissful weeks.

Zoe decided to make a statement of her strength and was born on July 4, 2011. She arrived in this world like a little firecracker ready to battle for her life. At just seven days old on July 11, 2011, Zoe underwent her first open heart surgery, the Norwood, under the care of Dr Starnes at CHLA. After almost eight weeks of ups and downs she was discharged on August 25, 2011 to go home. We spend the next four months loving every moment as she continued to thrive and beat all odds.

On January 19, 2011, at just over six months old, Zoe underwent her second stage surgery, the Glenn procedure, again under the care of Dr. Starnes at CHLA. She had a spectacular and speedy recovery of just six days and home on the seventh day. What we hope to be Zoe's final surgery, the Fontan shouldn't be for a couple of years.

Graduating from "interstage" is wonderful and we now have a taste of what "normal" life is like. We cherish very moment with our daughter and are thankful that she is a part of our lives. Her smiles brighten our days, her giggles warm our hearts. Her half of a heart is more whole then we ever imagined.

This is our journey to mend her broken heart.

..Life With Zoe..

Finding courage and hope to mend half a heart

Saturday, August 6

Good Times!

6 comments:

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