We went and saw Dr. Dilustro again today, Lily's fontanel was soft, her head circumference is up to about a 38 and the site where he did her previous surgery is poking out about an inch or so. He said that there is probably some CSF in there but it is not seeping out. He wants to see us back tomorrow, he is going to do another CT and a Ultrasound. He wants to establish a baseline with the ultrasound b/c he doesn't like doing the CT's every couple of days b/c of the radiation. We are then going to meet with him and discuss whether she will have surgery again on Friday. If she has surgery then he will stick the endoscope back in and see if he can locate the hole that he created a couple of weeks ago. If not, he will go a head and create another one. If this doesn't work then we will discuss the shunt. He is still confident that this could work. She is draining some but it is hard to tell how much. I do think that her hear circumference was down a little today.

I had to sign up for cobra insurance b/c I ended up resigning from my job. I have been unable to get all the details cleared up and was finally able to do this late this afternoon. (I popped in and saw all my former co-workers, It was wonderful seeing you all and I miss you all!) I was able to add Lily to my insurance/cobra and make her an appointment with her pediatrician first thing in the morning. I have a HMO so now that Lily has been discharged from the hospital all future appointments, procedures must have a referral. SIGH........ This was a bit of a task b/c she has not seen her pediatrician yet b/c she was in the hospital for the first three weeks of her life. So, tomorrow she is scheduled to see her pediatrician, then a CT scan, ultrasound and then Dr. Dilustro..... UGH... and Ken is working. It IS going to be an interesting" day. LOL

Please keep us and Lily in your prayers... I will post again tomorrow night and let everyone know if she is scheduled for surgery again on Friday.


so.. Last night Ms. lily discovered that if she fused just enough she'd get her way. :D :D........




Lily, I and "Sweet baby girl".



see Lily even has both arms raised in 'VICTORY!" Don't you all love the kitty pillowcase? I made it for Tori several years ago, but now that she is almosy 16 it isn't 'cool" anymore. LOL

God Bless!

I was finally able to take the Christmas decorations down this afternoon. We decided not to put up the big tree this year b/c of everything that was going on with my pregnancy and Lillian. It took longer to put it all out. I was also finally able to get Lily to breastfeed! Yeah... I finished up with a bottle. She is up to about 3 to 3.5 oz's each feed. (about every 3 hours) I want to get her transitioned over to more breastfeeding (will cut out some of the pumping, she only gets breast milk) but, I like the fact that I know how much she is eating. That is one of the things that we have to watch on a regular basis, how well she is eating. I measured her head today and I am almost positive that it has increased in size again today. I am glad that we are going to see Dr. Dilustro tomorrow morning. His office called me this afternoon for insurance purposes but while on the phone I let the receptionist know that her head was bigger but she is eating well still. She talked to the Dr. briefly and he said as long as she is still feeding well, he will see us in the morning. He will probably decide on how to proceed. I fully expect her to be re-admitted to the hospital for another surgery. I just don't know how soon he will want to do it.

Please keep praying for her. We can't thank you all enough!

Here are a few photos that I took of her today while hanging out in her crib with her giraffe. :)







For in it the righteousness of God is revealed from faith to faith; as it is written, “The just shall live by faith.” Romans 1: 17(NKJV)

We had a follow up with Dr. Dilustro this morning; he said that her fontanel was a little fuller than he'd like and her head measurements have increased as well. He sent us downstairs to get another CT. The CT revealed that her ventricles "could" be slightly larger again. He examined her again when we went back to his office. He had one of his partners feel her head and Dr. Tor (neurologist) was there for a consult for a different patient. This time around he said that it was MUCH softer and if he would have felt that the first time he would not have gotten the CT. Sigh...... He wanted to see us back on Thursday but, we are going to be at the hospital on Wed. so he is going to just see us then. We discussed the fact that he may need to go back in and take a peek at the hole that he put in the cyst before and maybe put another hole in. Only time will tell...

We had a somewhat tough night last night. I am ready to go to bed now. LOL

Please continue to pray for our Lily. God Bless you all!

Made it through the first night.......

I am so grateful to have her home that I don't care if she was up every 2.5 to 3 hours to eat. We still haven't worked out this whole breastfeeding thing... She is getting breast milk via bottle. So, that means double the work for me during feeds. LOL Feed her then pump. It was difficult to coordinate it all while she was in the hospital so we only tried a couple of times. I have tried each time she has fed this morning. I think that we are making progress very slowly. Our freezers are about full of milk... we have to get this worked out soon or I'll be buying another deep freezer for breast milk only! LOL...

While she was in the hospital we were told how she despised her sponge baths. Last night Ken and I gave her one. (her umbilical cord was still attached; it fell off this morning) She was so sweet! She was looking at us and all around. She did not cry one single time.

Here is a photo that I took of her this morning before getting her dressed. :)


Ok.. So the other day Tori found a heart shaped chip! Think I could get anything for it on e-bay??? Valentines day is right around the corner! LOL



I just have to post this photo.. It is only a cell phone pic but it's adorable! :D Lily has already started to pray! ;)

Home!!!

Lily's home!
We go in to see her Doctor Monday morning. He wants us to make sure that her fontanel remains soft until then.........

Praise the LORD!

I just called the hospital and....... Dr. Dilustro is going to discharge her today! I am waiting for Ken to get home so that we can go and get her. When we arrive at the hospital the nurse is to call Dr. Dilustro and I'm sure that he will be giving us a list of items to look for and etc.

Her original due date was 01/10/09..... She will be home before her due date! We are SO excited!

Called the hospital this morning.... Dr. Dilustro had not made rounds yet. Her fontenal is still soft but the nurse said that her head is up 2cm. Grrrrr... Not sure if he is going to want to keep her or not. Two days ago is was up 1cm then yesterday back to 35.5cm. It could also be the person doing the measuring. There is a little room for error. I'd think that if her head was "filling" the fontanel would become firm. I suppose we will know in a couple of hours if Today is the day we get to bring her home or not. :)

Will post when I know more. :)
God Bless!

I know FINALLY............ :)

I wanted to get by here yesterday and post an update... BUT, I didn't leave the hospital last night until about 10 pm and when I arrived home, we were without power. There was a "wind storm" moving through our area and knocked our power out. The block before and the block after us had power... GRR.. So, we were without power all night and this morning when I awoke, still no power. We have a septic system and well water so when we don't have power, we don't have water either. *Sigh* So, I had enough water to brush my teeth and wash my face. LOL Let me get to what I wanted to post about..... Yesterday, we saw Dr. Dilustro, he said that Lily's fontanel is nice and soft, she still has small ridges vi sable. (So, she has filled in/up some) He had scheduled her CT scan for this morning. We also discussed the possibility of him taking her back to the OR for a third surgery on Friday. He said that he wanted to put the endoscope back in and see if the hole that he placed in the cyst is still there. I asked him if it were possible for him to put another hole in if he felt that it would be beneficial instead of shunting at this point. He agreed, he went on to say that he is in NO hurry to place a shunt at this time. She is acting like a "normal" newborn at this time and he'd like to continue to work on the cyst fenestration. His office is here at the hospital so he asked me to stop by the office when I got here so that we could discuss the results of her CT and what the next plan of action is. So..... This morning I got here early, came in and fed Ms. Lily and changed her and held her. When I tried to put her down she went into "melt down" mode. OOPS! So, I swaddled her snugly, held her super tight and rocked her. She eventually fell asleep. I went to Dr. Dilustro's office and was taken right back. He showed me Lily's first CT and the one from this morning. The first CT there was hardly any brain tissue where he had placed the drainage port during her first surgery. Today's CT revealed that the cyst is smaller, her ventricles are smaller AND there is now visible brain tissue where there was none before. He said that he has canceled her surgery that he scheduled and he wants to wait and see what happens. He can't see risking an infection and etc. just b/c he wants to see if the hole is still there. So, If she looks good tomorrow morning when he looks at her we should be able to go home! He said that we will be seeing him regularly. Probably about three (3) days a week. Eventually we will follow up with a Neurologist, early intervention, along with him. He said that he will probably follow her until she is about two or three. We still have a very long journey but... today things looked good. I am SO grateful!!!!! She may need future surgeries but right now he is waiting to see.



I'll post new photos tomorrow.

God Bless!

We have been coming home each night to sleep and then going back to the hospital. Now that Lily is on the floor we are permitted to stay the night with her. I have not done this so far. I feel so guilty. It's just that we have another child, and even though she is a teenager she still needs our attention as well. Not to mention her physical therapy appointments that are still three days a week. I must have been exhausted last night; I slept through my 1:30am pump and woke up extremely uncomfortable about 4:30am.

So, we called the hospital this morning after change of shift, typically the Doctors make their rounds about 6am or so. Dr. Dilustro was in and said that they are going to do another CT scan tomorrow morning. After the CT they will decide on what to do next, if all looks well/good she may be able to come home. If the fluid is not draining as he had hoped (we know that she is draining some on her own) then I'm sure that he will be keeping her and we will then discuss her shunting options. Due to the area of the cyst, he said that if there is complete failure from the fenestration that he did on December 26th then she would need two (2) shunts.

Please continue to pray for our sweet angel... that she will not need the shunts at all and her CSF is flowing/draining as it should.

This is the hardest thing that our family has ever endured. For those of you that know us personally know the hardships that we have endured over the years with Tori. Ken and I are SO BLESSED to have baby Lily in our lives. We know that God is in control, he already knows how this will turn out and he gives us strength to make it through.

I was able to spend the entire day with Lily today. I had to pull myself away tonight. I am now able to spend the night with her but have not been able to yet. Dr. Dilustro checked her this morning and her incision site is still dry, her head circumference is still 35.5. He wants to watch her for another 24-48 hours before he decides when she can come home. Once she comes home we will still need to watch her closely and measure her head. He said that he knows that she is draining but just doesn't know how much. We are hopeful that her body will adjust to the pressure and no shunt(s) will be needed.

I'll post more when I know more.