Heart Families to Pray For

Lately I have been thinking a lot about other heart families that are going through some trying times. Our blog friends, Alli (pictured at left) and her husband Kyle are expecting their first baby, Grant, any day now. Grant was diagnosed with HLHS a few months ago. Please pray for them, as they embark on a journey many of us know all too well. Pray that Alli's labor and delivery go smoothly and that Grant is a champ through it all! Pray for his surgeons, nurses, doctors, and other caretakers, too. I know that Alli must be going through some difficult emotions right now. I can totally empathize with her! Alli, please know that you are in my prayers. You can follow Grant's Journey here.

Another family that has been on my heart a lot is the Gledhill family. If you remember, I posted about their little girl, Gracie, who also had HLHS and received a heart transplant. The heart she received, however, did not work the way that the doctors had hoped, and she went to heaven on March 2nd. The story of sweet Gracie has been on my heart for quite some time now. I have never personally gotten an email or response from Michele, Gracie's mom, but I have been following their blog for the past six months and I've left a few comments here and there. I don't know whether they have visited here or not, but just in case, Michele, please know that you are in my daily prayers and I think about you and your Gracie often.

As you know, our heart friend, Charlotte had her Glenn yesterday. Thank you for praying for her. She is doing so great! She's already off the breathing machine and went to step-down today! That is so amazing! She is supergirl! Yay Charlotte!!

Charlotte

One of our HLHS special heart friends, Charlotte, is having her Glenn tomorrow. Charlotte's mommy, Jenn and I have become email/Facebook buddies throughout the past several months. It is nice to have someone to "talk" to who is going through the same stuff we are. Jenn has been so kind and supportive of us, praying for us always and updating her blog readers on Emma Kate. She made the "Praying for Emma Kate" button on my blog here.

Friends, please keep Charlotte, her family, her doctors and other caretakers in your prayers tomorrow. Pray that her surgery goes smoothly and that there are no complications. Click here to visit Charlotte and her big brother Sam's blog.

Week One at Home

Thursday we went to see Dr. Law for Emma Kate's follow-up visit. Her x-ray was clear: NO FLUID has accumulated since her tube was taken out! Hurray! She has been ordered to stay on Portagen for another three weeks and then we will start Similac.

Things have started to get back to normal around here. Emma Kate is still sore sometimes, but for the most part, she doesn't seem to be in much pain. She is enjoying her toys, playing with her sister, watching herself in the mirror. She is getting her strength back, too. For a little more time every day we are putting her on her tummy and letting her sit in the Bumbo. She doesn't like to sit in it for long (I think it hurts her side still) but she is working up to where she used to be. Things are going great now and for the most part, EK is so happy all day. I think she knows that she is home.

Our Beautiful Girl

Emma Kate is so glad to be home!

Tolerex, Anyone?

Since we have been home, Emma Kate is taking all her Portagen feedings via bottle, which is a whole different scenario than when we came home after the Glenn. Back then, she was on Tolerex formula and they were all NG. Because of this, we have a TON of Tolerex as well as feeding pump bags. Does anyone need this stuff or know of someone who does? I can ship it wherever. We also have a bunch of unopened syringes and 3 NJ tubes (no idea why they sent those...) Our home health won't take the formula back, even though the box is unopened. Our pediatrician's office is having a hard time figuring out what to do with it (it's a donation, what is the big deal?) So, I figured if someone else could use any or all of it, I'd be glad to send it out. Just let me know.

Finally Home!

Life is finally getting back to normal. We got home on Monday afternoon and Emma Kate has been doing great! She is just as happy as she can be. After her chest tube came out on Saturday, she had an x-ray each day to make sure that fluid did not reaccumulate on her lung. Everything looked clear and it was such a relief to hear the news that we would finally be going home! Tomorrow we have an appointment with Dr. Law to check her chest via x-ray for fluid reaccumulation. So far she does not have any symptoms. Her breathing is normal and she is so, so happy, other than the occasional cry from the pain from her side.

Here are some pictures from our most recent stay at Egleston!

In the ambulance on our way to Egleston. She actually had a good time, even though she looks sad here.

Playing with her feet. This was two days before surgery.

Emma Kate and our wonderful surgeon, Dr. Kirshbom. We LOVE him!

Finally!

We are home! More tomorrow.