Tuesday, July 9, 2013

Update with pictures!

Sorry it's been awhile since my last update! We are just over 1 month post Fontan! That is crazy to me since we planned to be in Dallas still! We were prepared for weeks to months in the hospital recovering and now it seems like we have been home a long time. I talked to Ella's cardiologist office this morning for our weekly phone check up. Overall Ella is doing very well, but she is still on the low side of oxygen. She is just about 80 all the time, but this last week she has gone as high as 89 which was super exciting to me since she hasn't hit that number since we left Dallas, but she also hit as low as 75 and is still about 80 most of the time. We are hoping we can avoid another cath surgery, but she really needs her oxygen to come up to avoid that. Please please continue to pray for her oxygen to come up soon!

Ella still needs to gain weight, but she is eating well, so I hope it's just a matter of time. She is sleeping better, and since we lowered her blood pressure medication again last week her cough is much much better. It is still there, but it is mild and doesn't seem to bother her any. Also her blood pressure is staying stable! Praise the Lord!

Please also continue to pray for her immune system to be strong, She will be venturing out more in the coming weeks and with her oxygen still being low, a sickness could mean a hospital stay.

We can't thank you enough for continuing to pray for our sunshine, we have officially made it past her last scheduled open heart surgery, but we are FAR from out of the woods. Ella will have future surgeries and possibly a transplant, we just don't know what or when and we hope they are in the far future. She is still very sick and always will be, we are just so thankful that despite the "terminal" future, God has blessed us with so much time already and we are hoping and planning on many more years together. Doctors say that this time is the best time of her life and the older she gets the more problems we will start to face. We are continually reminded to cherish everyday. We are blessed to know so many of you love and care about Ella as well!

Today is 1 month from my sweet Sunshine's 3rd birthday!!! We are just SO thankful that the Lord has blessed us with so much time with our miracle girl! Can you believe it?!? THREE! Just crazy that we are so close to her birthday. We are busy planning a princess party for our princess, and in general just living life together!

Ella had a visit from her new cousin on the 4th of July!

Then we went to watch some Fireworks! Ella just kept smiling and hugging us she was so happy!

"Daddy, let's dance together!"

She clearly is feeling better :)

She asked me to take her picture yesterday and it made me SO happy! She hasn't liked pictures since surgery because she associated it with x-rays (the nurses and techs call x-ray's pictures). She has started slowly asking for pictures again and it makes me so happy to know she is healing mentally as well as physically from surgery! 

Not sure how this is comfortable hahaha she forgets she is supposed to still be in pain from open heart surgery you know ;)

We have way too much fun together!


  1. Just from looking at the pictures, Ella looks SO much better!! Her eyes aren't sunken in like they were, and she looks like her happy, cute self! We are happy to see her doing so well! Our family continues to pray for her.

  2. I'm so glad she's doing well.

  3. Beautiful child!!!!!!!!!!!!!!!!!!!

  4. You all take the cutest pictures. It is good to see little miss sunshine feeling better. She loves to pose and smile doesn't she??? GOING TO BE 3 ??? Wow. I started following your blog about 2 years ago. Unbelievable it has been this long. She will be the true princess at the party!!!!!!!!!!!!!!!!

  5. She is better!nice news!


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