Some Good News and then....

Today was the weigh in for Lily. She is now 9 lbs and 3 oz...meaning she has gained 1 lb since she saw the Dr last Monday (01-21-08) Which is good, at least she is gaining. The not so good news is that Lily has cut back on eating. She is back to eating about 6-7 oz a day when she was eating 10+ oz a day (of the concentrate formula) The pediatrician is really concerned about her not eating...she suggested changing bottles or just to syringe feed her. The Dr even suggested just putting a feeding tube in; I didn't want the feeding tube in...I'm not ready for Lily to go thru all that yet. So we have til Monday to get Lily eating more.

**If it's not one thing, then it is another**

Also, our pediatrician told us that the heart specialist was talking to her about the surgery and that they are waiting on the surgery to give Lily a chance to put on some more weight...so that she has a higher survival rate after the surgery...so all in all, the surgery is happening whether she gains weight or not...it would just be better if Lily was gaining weight.

It just seems like so much to take in..and it is all happening to someone who cant do anything about it. I just wish that this was all a bad dream and I could wake up and things be back to normal.

But i know that God doesn't put on you what you cant handle...I just need him to show me that i can handle it, because i am not feeling that strong right now.

Please continue to pray for Lily and for the family.

On a lighter note...

With all that has been happening lately, I thought i would post about Dakota's 2ND birthday party. He officially turns 2 on the 28th, but we celebrated his birthday this evening. He really didn't understand all what was going on. But when it was time to blow out the candles, i think he started to understand.
So tonight was all about him. If i would have been on top of things, i would have videotaped his blowing out the candles. It seemed to take him quite awhile...it was almost as if he didn't want to the flame to go away.
All in all, it was a wonderful time just to be with family and have some enjoyment, with all that has happened in this past week's time. It felt good to not be calling doctor's offices or insurance companies back and forth all day asking who received what paperwork and what else needed to be sent out, clarifying information, etc.
I find that when you have family, it doesn't matter what else you have...Having family makes me one of the wealthiest people i know....money isn't everything, it comes and goes...but family is always there.

For those keeping in touch on Lily's condition...she is doing better. Eating almost double to what she was eating at this time last week. The last 2 days she has taken in at least 10 oz of formula a day....she was barely taking in 6 oz in a 24 hour period. And she seems alot happier...I don't know if it is the medicine that she is on or if she is finally having enough energy to eat and having a full belly is keeping her a happy little girl.

1st visit to the Heart Specialist

well, we just got home from our visit to the heart specialist. Lily definitely has a hole in her heart and it is a medium to large hole. The doctor gives Lily a 15% chance that she will NOT have to have the surgery...meaning that there is an 85% chance that she will. :( The surgery will be open heart surgery to patch the hole in the septum between the right ventricle and the left ventricle. We see the specialist again in 4 weeks, unless Lily fails to gain any weight..She will be weighed again on Wednesday and if she doesnt gain the amount of weight the drs would like, we are back to Dallas for another EKG and echo of her heart...to see how much more the heart has enlarged and if the hole has gotten any bigger. And depending on the the "damage" they will then schedule her for open heart surgery. The dr said we would be looking at a 10 day to 2 week hospital stay with her.

There is that 15 % chance that the hole can heal on it's own if Lily can gain more weight and help her heart out.

the dr put Lily on 2 meds to help get rid of fluid in the lungs and also something to help with the heart's muscles...dont remember the names of the meds offhand.

It was a good visit...the dr was very nice and made us all feel at ease. Lily just looked around and tried to coo thru her EKG and then she fell asleep for her echo of her heart...so she did really good with her tests today.