We are at home!

Sorry for worrying you Avery.....I was SOOO tired yesterday, we were at the doctors for 3 hours and all Lily did was scream. She screamed during her X-ray, she screamed though her echo like she was dying. I thought she was going to blow her valve from screaming the way she was. She was coughing so hard and gagging, we all would roll her to her side when she did because we thought she was going to throw up and choke on it. It was awful....my ears are still ringing from her screams. She didn't have to have an EKG thankfully and Anastasia was happy about not having to make the princess any more angry. Everyone that saw her said she was beautiful but sounded like crap....which made me laugh....because it is true...she sounds AWFUL...you can hear her a mile away. Ok that was a bit of an over exaggeration but I wanted you just to imagine how bad she sounds right now.

Her crib mattress is elevated, we have the humidifier pointing on her, Vick's vapor rub on her chest and feet with socks on....the poor baby....can barely eat her bottle because she is so congested. This is the only time a NG tube would be good....but I am thankful we are past that point.

The X-Ray came back clear, so no pneumonia...Praise the Lord in Heaven above, I prayed all day yesterday and the night before....my princess didn't need to over come that. Now we are waiting on the RSV swab results, which should come in on Monday. I am almost positive that it isn't RSV seeing Austin had it when he was a month old and he had a fever and all that fun jazz that went with it....but we will see, since she is older it could be different.

Now we got some downer news. Lily's valve pressure is up to 40%. Now that is nothing compared to what it was but it was 30% right after surgery. Dr.Rhee said it most likely has to do with her being awake and her heart actually functioning on its own with out being helped with the breathing tube and everything else. I know what he is saying but still, 40% and we are 2 weeks out of surgery. Before surgery we were told it was about 80%, well I found out yesterday when Lily went into surgery and they actually looked at the valve it was at 90%...ugh...close call? Well, Lily went from 60% in the middle of September to 90% in the beginning of December. So granted 40% is nothing....if I do the math correctly and know how Lily grows scar tissue, I see us back in for another surgery in less than a year. I am thinking more along the lines of 8 months but we will see. Dr. Rhee is hoping for more then a year...but he knows why I am thinking along the lines I am....so...like I have said before...Lily is our ticking time bomb...we go for monthly visits to check our time line. I have to tell you.....it is quite an irritating life style to live, because you can not plan to do anything a month ahead. You live one month at a time and prepare yourself for all possibilities the next month.

It could be worse...I know....our life could be a 10 times worse then it is....but for once.....I would like to have something to resembles a normal life....but what am I talking about....I have never had one of those, so I shouldn't expect one right now!

Thank you all for your continuous prayers....Lily shows them all, her fight and determination is given to her through Gods Will and your prayers!

Sincerely
Jenna