Thursday, November 20, 2008

Baby Emily's Heart

We had our cardiologist appointment today... It was pretty rough. The hole in Emily's heart it too big and will require open heart surgery to close. We were devastated. Her lungs are getting too much blood pumped into them and it is making it harder for her to breath. She is now on medication to help keep her lungs clear so she can eat with out any distress and gain enough weight to have the surgery. Emily is still very small and the doctors want us to fatten her up with higher calorie formula for the next few months. The more she can grow, the bigger her heart will get which will make the surgery easier and most likely have less complications. We will take her in for more weekly weight checks and doc appointments. As long as she continues to gain weight, they will wait until she is close to 6months before surgery, if she slows in her weight gain we will do the surgery immediately. We are grateful for her great doctors and know that we are all doing everything we can for her, its just hard to watch your baby and not be able to protect her or take away the struggle. She is a sweet baby and a fighter, we are so grateful for her! She has taught us so much in the last four weeks, we are humbled by her strength.

17 comments:

April Austin said...

Oh you guys...I'm so sorry to hear that. I know nothing is more painful than seeing your child struggle with something...and especially something so scary! But keep being strong and I'm sure everything will turn out just fine. She sounds tough...she'll pull through! We love you and will keep your family in our prayers!

Joey Clements said...

I'm so sorry Loni. I can only imagine how hard this is to go through. Your family will be in my prayers. (((HUGS)))

Vanessa said...

I to am so sorry. You are an amazing family with such strength and love. Your family and little Emily will be in our prayers.

Peter Christensen said...

I've loved the stories about your twins and how they love to snuggle each other. I'm so sorry that this has happened and we're all praying she gets better. As unfortunate as this is, I'm sure this will bring you closer as a family and keep you focused on the most important things in life.

Love and prayers from the Christensens.

C said...

Loni! Hi! Peter and I have been following you guys for some while. I am sooo sorry about baby Emily. I have been humbled ready about your experiences and your joys. This post brought me to tears. We will keep you, Ben and the girls in our prayers.
We love you guys so much.

Love,
Celeste, Peter and the girls Christensen

The Isoms said...

I will make sure to remember her in my prayers! I can't believe they are four weeks already!

Kory and Tiffini Howard Family said...

You guys are such a strong family and I'm sorry to hear of the struggles. I will remember you guys in my prayers!

Stina said...

Oh, Loni. I'm sorry for the hard news. We'll keep little Emily in our prayers. I always tell people about your cute twins and the beautiful pictures. Hang in there! Miracles do happen!

LOVE YOU!!

Ginocchio Family said...

LO!!! I can't believe I am having to read about this in a blog!! I am sooo sorry for the bad news that you received yesterday. I love you and your family and though I have yet to meet your sweet Emily, I am sure that her spirit is just as beautiful as she is. We, like everyone else, will be praying for her and your whole fam during these next 6 months!!

Matthew-Jessica-Chase-Taleah said...

Oh Loni that must be so hard! I hope all goes well for sweet Emily.

Annie said...

I am so sorry to hear this news. I had hoped she would be able to avoid the open heart. However, I happen to live with a 5.5 year old who was "fattened" up and came through open heart surgery with flying colors! In fact Nov 19 is "heart day" at our house. It's been five years since Allie's surgery. YEA! Miracles happen- the fact that they can fix a VSD is a miracle in and of itself. Emily is a fighter. She will do AMAZING. If you ever need/want to talk....you know where I am!
Our thoughts and prayers are with you. Tons of love!

Tim and Sandy said...

Ben and Loni, oh my. I haven't been in the blog world for the past few months and just saw all of the updates. We will include Emily in our every prayer and pray for the strength for you both. What absolute beauties these two are! Congratulations you guys. I am so happy they are here and I love that they have to be together and touching, so very sweet.

Hannah said...

Wow, we will keep her in our hearts and in our prayers. You are a fighter too! I'm glad you have good doctors who know what's best.

RHETT AND NICHOLE said...

You guys are so amazing. To be so strong would be hard, it will all the great! They are beautiful!!!

Kelly and Mandy said...

SO sad Loni! You are in our thoughts and prayers. We will be in Utah for Christmas and I am hoping you will be around so we can come see these babies!

Chris and Lani said...

Lons, so sorry to hear about Emily. We will keep you guys in our prayers. I know you and Ben are both so strong so I'm sure Emily is too. Keep us updated. Besos!

Stina said...

Just want you to know, I put Emily on the prayer roll of the SL Temple today. You are in our thoughts & prayers!