'I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.'" – John 8:12


I can not thank you all enough for your continued payers for Lily and our family! I have so much gratitude for each and every one of you!

I don't have a whole lot to update, I called on Lily overnight and they said that she was eating well and that she slept a lot. Ken went to visit her this morning before he went to work and he said that she seems good. I am getting my things together so that I can get over there early this morning. I will post when I know more.

Have to wait...........

I wish the one Dr would not have gotten our hopes up for today. :( Lily was moved to the floor, which means that she has been downgraded BUT she is sharing a room with a child that screamed and cried all day. I was going to try and stay the night with her but I just can't. We talked to the charge nurse about seeing if they could get the other child a private room. With the hospital being full, this may be a task but, I figured it would be better for him to have their own room so that no one else would be disturbed. I feel badly for him and I know that he can not control it.

So... we will be waiting for a few more days. The CT scan revealed that the cyst could be the same size or larger and her ventricles could be larger as well. :( :( I have noticed that her ridges are not as pronounced as they were. When I spoke to Dr. Dilustro this afternoon he said that he had expected them to increase and that she is "stable." But, we have to wait and see if her body can work through this or if the shunt(s) will be needed.

I have to admit this is killing me.. I hate to be away from her and I pray for her health. Please continue to say prayers for her. I will update when I know more.

God Bless...

We have to wait a little longer...........

I called the PICU just a little while ago and the nurse told me that Dr. Dilustro was in to see Lily, and ordered a CT scan to take a peek at her. She is still stable, and has had NO changes... no drainage and her head circumference is still the same. (35.5 it was 36.5 when she was born) He is very conservative and would like to be sure before we are discharged. I completely agree... I'm praying that the CT shows positive things! I will post more tonight when I know more.

Stable, Stable. Stable!

As of 5:30 am this morning, all is the same! No drainage, head circumference is the same and she is now eating about 3oz per feed! As of right now... She is homeward bound! will post again later to confirm.

So far so good..... Stable all day today! No drainage from her surgery site and her head circumference is still the same!!!!! Praise the Lord! I am praying that we continue on this path and that all of her compressed brain tissue will decompress and will not be damaged.

I'll post another update tomorrow....

Quick update:

Still no site drainage! (YEAH!!!!!) Her head circumference is the same. (YEAH!!!) everything is looking good. (YEAH!!!) She LOVES to be held! (The nurses in the PICU have been loving her up) The Dr. gave her a look over this morning and is pleased with her so far and once again said that if we continue on this path.. she should be able to come home tomorrow! WOW... tomorrow!

Once again, our family can NOT thank you all enough for all of your prayers and support.

God Bless!

Lily was the most alert that I have ever seen her today! She spent a lot of time looking at us and was very curious about every little sound today. It was so awesome to see her like this! I tried to nurse her, that didn't go so great but we will keep trying. :) While we were there the nurse paged the Dr. b/c he wanted to speak to us. So he called and asked how Lily was today, I told him very alert and he said great! So they had decided to move her onto the floor today but, the hospital is full and they were unable to. They may try again tomorrow but this afternoon we were told that there were eight (8) children that were in the ER that were waiting for beds. So, they just may end up keeping her in the PICU. The Dr. went on to say that he incision site has been dry all day and her head circumference is the same as it was yesterday before they pulled the hardware. He said that if she remains this way and there are no other issues and if Dr. Dilustro gives the go ahead she may be able to come home MONDAY!!!! This news was a bit shocking for me, I am very excited but don't want to get my hopes up to much just yet. He went on to say that if she is "truly" hydrocephalic then we should know by then and then of course they would be keeping her to place a shunt. Of course we will still have to watch her and she will have regular visits to make sure that everything is ok. So, at this point we are praying that there are no changes over the weekend and that once we are released that her brain tissue decompresses and is not damaged.

Here are some photos from today... You will be able to see the ridge line on her head and where the plates are a little over lapped. This is b/c there was fluid there to expand her head and it has been removed or is flowing. Please continue to pray that her CSF is flowing properly and that she will not need a future procedure.

Overnight.......

Ken and I call about 4 times throughout the the night to check on Lily. Last night the nurse asked us if we ever sleep. LOL We typically call when I am up pumping. (We multi-task) So, when we called about 2am the nurse told us that Lily's surgery site had been leaking again! This is after they removed all the hardware and stitched her shut. So, the resident called her Dr. and he came in and gave her an additional stitch, changed the dressing and put her back on antibiotics as a precaution. She has been feeding well, about 2.5 oz's every 3 or so hours. Hopefully today I will be able to try and nurse for the first time.

This morning when I called over, her incision site was dry. Hopefully that stitch will do the trick. Now I pray that she will have complete "flow" and he will not have to do an additional surgery or shunt her. God has blessed us so many times already. I know he has a plan and it is going to be way better than we could have ever imagined.

I'm off to shower and be ready when Ken gets home to head over and see our little bundle. :)

Whew........

Lillian is such a strong girl! She had her second surgery today. Dr. Dilustro removed the external drain and closed her up completely. We spoke with him this morning before the surgery and we wanted to be sure that we are not moving to quickly. He said that the amount of fluid that came out through the external drain was minimal (even though to Ken and I it looked substantial) This morning her fontanels were even more pronounced. (we are able to see the ridges) Her soft spot was deeply sunken. He said that the fluid was leaking out around the drain b/c that is the path of least resistance. He said that right now the brain tissue that is close to the skull is minimal in comparrison to size of her ventricles. So by removing the drain we are hoping that it was cause pressure on the cyst and break it down even further. He did say that she is draining some on her own but we just don't know how much. So, it's back to more waiting. I pray that this is successful and that she will not need to be shunted. There is the chance that she would need two shunts. :(

I was able to hold her this afternoon and feed her some. She slept a lot. I am hopeful that tomorrow I may even get the opportunity to try and nurse her for the first time. If she does well tonight they may move her from the PICU to the floor. We can not thank you all enough for the abundance of prayers... We are still far from a resolution...

Here is a photo of Lily before her surgery today:


Here are my girls:

Second surgery is scheduled for tomorrow.

Happy New Year everyone! Today is Ken and I's ten year wedding anniversary! Wow.. How has time flown by.

Onto Ms. Lillian............
We arrived at the hospital this morning and learned that she is once again spilling fluid from the drain site. Dr. Dilustro was off today but one of his partners looked her over and felt that this was "ok." However, when Ken and I arrived we insisted that the resident contact the Dr. again just to make sure. Not that we are second guessing the Dr's but we needed some reassurance. So, Dr. Dilustro called back and decided that the drain needs to be removed. One of our concerns is if fluid can get out, can't bacteria and etc. get in?? So, when the drain was "installed" we knew that there would come a day where it needed to be removed. Tomorrow is the day. He was not able to achieve the desired results with the drain in so, tomorrow morning he is going to go in and remove it and stitch up the area. Then we have to wait and let the fluid build again. He is hopeful that this will add pressure to the cyst and help it to drain.

We have been told that this is a marathon and that it is going to take a while. She will most likely have multiple surgeries. Please keep her in your prayers tomorrow. Please pray that this procedure is a success.

I was able to hold her today.. that felt so awesome. She seemed to be fairly alert, and content most of the day.

Here are a couple of photos from today.... Yes, Ken and I match. LOL it was not intentional.

God Bless!