Wednesday, July 17, 2013


Zuzu's surgery didn't go as planned. The surgeon even made her left valve smaller which is causing serious complications for her. So, she needs another surgery. I'm so sad, a little angry, sick to my stomach, and beyond frustrated. After this one surgery she was suppose to be all better. But here we are yet again waiting...watching. Making sure she doesn't go into heart failure. And frankly IT SUCKS!

But This is my life now and I'm ok with it because I have the neatest little baby to love and somehow Chris and I are getting through it becoming closer then before. I'm ok with it because I've gotten to know God and Jesus Christ better. I'm ok with it because of all the people we have met along the way, mostly in hospitals. I'm ok with it because I have the most amazing support group and family who love Zuzu more then words could tell.

So here we are dying to know the next step and we don't have much time. Little Zuzu's breathing is rapid and labored! The surgeon that performed Zuzu's surgery (chief of cardiology at Primary's) is only 90% confident he can fix the narrowing HE CReATED :( and only 50% sure he can fix the rest of the leakage (double frown). So he's trying to get in touch with the hospital in Boston to see if a surgeon there is more confident. Boston is the number one cardiac hospital IN THE WORLD! And Zuzu's case is extremely rare so we are praying to find another surgeon with more confidence who can fix her heart ASAP! 

So that's where we are waiting, watching, hoping, praying, crying, wondering.
 And in the mean time we keep moving forward with smiles on our faces if not for each other then for this doll face. 
Teaching her to swim. She is doing amazing! And her first bandaid. 

Sliding down the stairs in a sleeping bag. Priceless!! Taimi we love you!


Megan said...

Ashley - I found your blog through your sister's. I cannot imagine what you are going through. I just want to say that I am keeping you, Zuzu and your family in my prayers.

Dusty McRae said...

I too found your blog trough your sister and I pray for you and your little Zuzu daily. Big hugs and lots of prayers from Texas to little Zuzu and your family!

Annette said...

Found out about your little Zuzu from your sisters Instagram. She is the cutest little thing! I have a son who has Down syndrome and was born with an AV canal defect and had open heart surgery at 3 months....they left his cheat open for 5 days hoping he wouldn't need a pacemaker.... But he did. He has had a lot of ups and downs.... But was such a tough little guy! Heavenly Father was so a great comfort to my husband and I.... I don't know what we would have done without the gospel!

Annette said...

Prayers for your family! The waiting is the hardest part!

Unknown said...

Praying for your sweet little baby everyday. As with the other commenters, I read about Zuzu's story on your sisters blog.

angie blom said...

Sending all my love and prayers to sweet Zulu and your family.. She is a fighter .. You all are wonderfully blessed to have such support , I hope they get everything worked out in Boston so she can get what she needs to make her feel better! Hugs to you all xx

Me said...

I found your blog through your sister's blog. After reading this post, I felt compelled to leave you a message. I have been praying for Zuzu and your family since I saw her sweet angel face. It's okay and normal to feel all of the things that you are feeling. What a strong and loving family God has blessed Zuzu with and I can feel the love as I read the beautiful words of love and faith. Until nine years I ago, I ran the medical department for a non-profit providing homes in the community, vocational, social and medical support for developmentally challenged adults. I was so afraid when I started there that I would be too sad to handle it. Wow, I was so wrong. I was filled with love and realized how much joy I felt being with people who showed me a pure way to see everything through their eyes. There are so many wonderful supportive programs for Zuzu to grow and develop to her full potential and support your family. I pray that God will heal her through the surgeon in Boston and that you will all be surrounded with love and support.