Wednesday, March 18, 2009

The night after surgery.. all smiles with the help of a little morphine.. :)

She pulled her pulse ox off about 50 times.. setting off the monitors everytime.. it was her favorite thing to do.

Tube free and loving it!

This pic was actually taken before the button...see how well her cheek has cleared up!

Saturday, March 7, 2009


Thank you for all the sweet comments on our last post!! The last couple days have been rough for Bela, but what kept me positive was knowing how much better this will make her life! She left for the OR room in the nurses arms looking over her shoulder at me saying 'mama, mama' and crying. Wow, I thought it was hard before, but hearing mama almost ripped out my heart! The waiting was hard, always is..not near as hard as her open heart surgeries, but still hard. After 2 hours we went up to her room to see her and she was screaming! Boy was she not happy. So they gave her a shot of morphine and she relaxed a little. The rest of that day was rough for her though... Eleven pokes to get in ONE darn IV! Getting in an IV is so darn hard for Bela! And she hadn't eaten since 9 o'clock the night before and couldn't eat until 8! Poor little thing.. After a miserable day she finally went to sleep around 9:30 and slept pretty good at night. She woke up a couple times in pain and because of monitors, but she tolerated her food all night long which was great! She was already feeling better in the morning and we got the go ahead to go home! I love quick, uncomplicated stays! She slept most of the day yesterday and went back to sleep today after being up for an hour. I'm so glad she's sleeping and keeping her food down. Hopefully by next week she'll be back to herself. Having the tube out is going to be so good for her little nose. Her congestion has already cleared up! It's amazing what the tube was doing to her nose and more constant congestion, bloody noses, and open sores on her cheeks. I'm so excited to have her face back!!
How grateful we are that we were just there for a gtube placement. Being there is so hard to see so many very sick babies, it brought back a lot of emotions. We are SO incredibly blessed!

Wednesday, March 4, 2009

Happy 1st

Bela is ONE!! Everytime I think about it, I can't help but get emotional..
Over the last couple of months, there have been some really difficult things happening among our little heart friends. My heart goes out to the families of the many precious babies that have gone back to heaven recently, and the countless others who have been going through very hard situations. We pray for them constantly. I have to admit that I am sometimes terrified knowing that any given day something can happen that sends you spiriling down a very scary path. The last six months have been very good to us, and we count our blessings everyday. I cannot believe that I have an active, spunky, happy, and squirmy little one year old. I'm in awe...

getting help to blow out the candle..

just a little taste of the cake

It's been a crazy year, but I can honestly say it's been the best year of my life. Friday we got to celebrate with a party, and Saturday we were able to walk in the heart walk with so many others who are standing in our shoes. It was a great way to celebrate her birthday. As we walked the loop around the lake, it was very symbolic to me of the journey she has made and how far she has come.

She was really serious about her present opening..

do I eat it?

wow, there's something in it?

what is it, what is it?

I love it!

getting read her new balerina book by her cousins

Bela with Jersey's big sister Tatum

who me? Drama queen?

hanging out with her buddy Addison

Today is a great day because it is the LAST day Bel will have a tube on her pretty little face. We are going in tomorrow at 9:30 to give her tummy a button. I have come to really look forward to her button. I know that seems wierd, but I like that I don't have to stress and worry about her body getting what it needs. We'll still work on eating like crazy, but on those days when it just dosn't happen, I will always make sure she's healthy. She needs help with eating right now, some days she needs a lot of help. I cannot express how elated it makes me feel to know that I NEVER AGAIN HAVE TO SHOVE A TUBE DOWN HER THROAT!! Just the thought of it makes me want to shout for joy! I really can't even say how hard it has become for me latley. We had our consult yesterday and the surgeon could tell immediatley we were DONE! So she worked some magic and got us in for tomorrow. I love her already. :) She said they usually don't see babies that old with NG's still and that Bela needs it out. I fullheartedly agree!! So out with the old, in with the new. I'm a little bit nervous about anesthesia and the ventilator, but this will be so good for Bela (and for us and our sanity), that I am more relieved than nervous. We should just be there overnight and home the next day.. that's the plan anyway!

Monday, March 2, 2009

Gracie Gledhill

This is one of the hardest posts I have ever had to write. Today Gracie Gledhill will go back to heaven. Her family is going to turn off her life support and say goodbye to her. She is 11 months old and is a light in this world.. We've been so touched to be a part of her story. She went in for her second surgery but they found out it would be too risky for her. So she was put on the transplant list. Three days later, a heart for Gracie came but after transplatation, it turned out that she had gotten a bad heart, and they have no other options for her. I cannot begin to imagine what saying goodbye to their baby after 11 months will be like. Join us in saying (many) prayers today that her mommy and daddy, brothers, and sister might feel strength, peace, and courage as they send her back home...

To view her blog click here: Gracie