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.

The results from the echo

we received the results yesterday that Lily has Ventricular Septal Defect (VSD) which means there is a big hole between the left ventricle and the right ventricle. This hole is allowing the oxygen and the blood to mix ---making Lily very tired..and exhausted. She cant seem to finish an ounce of formula without falling asleep...so she isnt gaining weight. She has only gained about 1 lb since she was born. We are seeing the pediatric heart specialist in Dallas tomorrow...so we can talk about treating this.

please continue to pray for our Lilyann.

All about our little Lilyann

Current mood: drained

So over the weekend, Lily had slowly stopped eating. She would eat a little here and there, but not much...we went about 3 days of her eating no more than 7 oz of formula each day (a baby her age should be eating at least 20 oz a day of formula) We thought it was her belly--maybe she was constipated or the formula wasnt something that was easy on her tummy.
We took Lily to see her doctor on Monday...the dr took all the info down and then started to listen to her heart...check her tummy, etc. Well, the dr listened a long time to her heart...and then told us it was her tummy, it was her heart. Lily has a heart murmur...which was visible at her 2 wk checkup but was very faint...and the dr was just watching it and was going to check it again at her 2 month checkup. Well, the heart murmur is stronger...meaning there is a hole in Lily's heart. And the hole is causing the blood and oxygen to mix making Lily not have enough energy to eat. She is still getting enough oxygen to breath and survive, but not the best that she needs to grow and thrive. The dr scheduled an echo of her heart for today---we recently got back from the echo...That was a 2 hour ordeal of trying to get Lily to lay still so they could take pictures of her heart. They will send all the pictures and such to a Doctor in Dallas and we should know all about Lily's condition in the next 24 hours.
I ask that you all keep Lilyann in your prayers...she is going to need it...she is doing somewhat better with eating. The dr had us up her calorie intake...so that she wouldnt have to work so hard to just finish 2 oz. Now she eats, and sleeps alot..she seems to get exhausted so fast...poor little Lily.
I'll keep you posted as we know with the updates.
Thanks,
Joy

rainy day blog

Today, it is drizzling and cold (46 degrees) which is cool here in TX...so the kiddos and I are stuck inside until Jed comes home from work...to let us use the car, if we want to maybe just get out of the house and go walk around the mall. Jed has been up since early this morning out delivering milk (you see, he is a milkman now--has been for almost a year) .

Ive made some homemade soup from all the leftovers in the house...and he is looking forward to coming home to have a bowl of soul-warming soup (as we call it)

Well, that is all for now.

Here are some more pictures of the family.

our 1st post!!

So this is the 1st post on the Smiths family blog...Hello to all from Jed, Joy, Dakota, and Lilyann.

Dakota is almost 2 yrs old and Lilyann is 6 weeks old. Having kids means that there is never a dull moment here at our house. Like today, Dakota found mommy's chocolatemint lipgloss and decided that he wanted some...needless to say, i am still finding blobs of lip gloss (sparkly) all over the house..on the tv, on the coffeetable, on Dakota's monkey..everywhere except where it should be (on anyone's lips)

But all in all, Dakota may seem to be a handful, but he has been a helpful handful today. Helping mommy with Lily "lele" as he calls her.