Just down-right CUTE!

Lily's fontenal is still soft and her head circumference doesn't appeaar to be any larger. I have decided not to measure it.

We don't have a whole lot to report. We are just trying to establish a routine.

Here is a photo that I took of Ms. Lily this afternoon. :)

Finally.......

Today was a busy day! Tori had an Orthodontist appointment this morning, then Lily and I dropped her off at school. We headed home so that I could nurse her and then off to see Dr. Dilustro. Her head circumference was 40.5 the morning of her surgery they measured it at 42.5, her fontanel is nice and soft and sunken. we are back in observation mode. We have to wait and see if her head begins to expand again. It took close to 3 weeks the last time. He wants to see us back next Thursday and they will do an ultra-sound then as well. I am praying that things are flowing the way that they should be. :)

I have noticed that she is starting to show more personality. For instance, yesterday she absolutely refused to take a bottle. I had thawed some of the breast milk for some of the bottles that I had made, I am hoping that she just didn't like the milk. i suppose we will know soon enough. :) Well, I am exhausted.. I am going to go relax.

Here are a few more cell phone pics. My cell is always handy and it is so easy to just snap.. I know not the best quality but still cute. :)

First Real smile this morning!

Ken is off today, so he took Lily's 6:30 am feed and let me stay in bed. Thanks baby! So, I came in to relieve Ken from Duty. ( Trust me, he doesn't feel this way at all!) She seemed more alert than ever this morning. I was talking to her and she smiled.. NOT a gas related smile. Awwwwwwww.... Then she was waving her arms around and she hit my hair and it moved. She noticed that she did this... and mimicked the motion several more times! What an exciting morning. :) We go and see Dr. Dilustro tomorrow afternoon. I think that her head circumference is still about the same. Her fontanel is still very soft and her skull suture feels to be in the same place. I'm praying that her ventricles and cyst are just "a flowing!" God has blessed us so many times already! :D

Here is a image of an infants skull. Just in case some of you are wondering about "fontanels and sutures."




1. Sagittal suture
2. Anterior (frontal) fontanel
3. Coronal suture
4. Frontal bones

"The flat bones of the skull are separated by areas of fibrous connective tissue that provide spaces between the developing bones. These areas (called fontanels, or soft spots) permit the skull to undergo changes of shape during birth and allow for rapid growth of the brain during infancy. Ossification of the fontanels is usually complete by 24 months of age." (All information taken from: http://bioweb.uwlax.edu/aplab/Table_of_Contents/Lab_03/Infant_Skull/infant_skull.html)

Well, I'm off to write my list. I have a TON of things to do today!


*EDIT*.... I just checked my email and enclosed was another devotional that I'd like to share. This is a good reminder to myself!


Yes. Wait. No.

"I call on you, my God, for you will answer me; turn your ear to me and hear my prayer." – Psalm 17:6


Sometimes we pray and immediately see God's hand move in a positive response to our prayers…and we know that he is alive and cares about us.

But then there are times when what we ask for doesn't come, and we don't understand why God isn't giving us what we believe is so critically important. In his wisdom, God knows that we need to grow and that we're not prepared to receive what we're asking for.

Sometimes God answers our prayers by saying no. I can't tell you why he says no. Sometimes it doesn't seem fair…but then, we can't see things from his vantage point so we have to release our own desires. When we do, his peace floods our soul.

When you pray, give God control of your life—it's the most important thing you can do.

* * *
Make three columns on a sheet of paper. Label the sheet, "How God Answered My Prayers." Label each column of your sheet with one of these labels: Yes, Wait, No. Then fill in the columns drawing from your own experience of answered prayer. Can you thank God for ALL of his answers to your prayers?

What day is it? What time is it? Who am I?

Shewwwwwwwwww!!!

Ms. Lily has been a bit irritable the last 24-48 hours. Not sure if it is the fact that she is out of "whack" and off every schedule that she had grown accustomed to. Having yet another brain surgery, the pain meds working out of her system, the anesthesia, or missing close to two days of feeds! Poor Baby, Poor mommy, Poor daddy, and Poor sissy! :D

She seems to be more pleasant so far today. Here are a few photos that I snapped with my cell phone this morning. :)

Thank you for your continued prayers, support, and messages! It means so MUCH to us!

God Bless...

Lily's best Magnum Look. (LOL Zoolander)







She sleeps!

Just a few photos that I took with my cell phone while in the hospital.

I am SO grateful to be home! Lily is doing well. A little fussy but she has been that way for the last couple of days. I gave her a little Tylenol over night and that seemed to help.

While Lily was in the hospital her older sister, Tori bought her new Lullaby music; Bob Marley. I have just loaded it on her OH, I mean my IPOD. :D She now has three lullaby playlists. The Bible song Lullabies that our church sent us. (One of her favorites!) A Baby Einstein playlist, and now Reggae. ( http://www.amazon.com/Lullaby-Renditions-of-Bob-Marley/dp/B000QZTCF8 )

I am looking forward to a day at home.........

Thank you for all of the prayers...

We are HOME!

Sorry, for the delay in posting.. but, we are home. Lily was discharged this morning and we have been home since about 10:30 am. I have been running around here trying to get caught up on the things that we have not had time to do b/c we have been at the hospital. I decided to stay the nights with Lily this time around. She had been home and we bonded so, I only felt comfortable staying with her. I'm exhausted. LOL Anyway, here's an update from the Dr. this morning; Her head circumference was about 41.7 this morning, yesterday it measured at 42. I'm not sure if it's down or if it's different b/c of the person who measured. Her fontanel is nice and soft. (Praying that it stays that way.) They did go back in through her original incision. The Dr. removed the dressing and we have to watch for drainage and etc. I am really surprised that we were able to come home so quickly this time around. We have to go in and see Dr. Dilustro on Thursday. I will call tomorrow and get the appointment. There isn't really a whole lot to report right now, we get to sit back watch and wait again. I am praying that this does the trick... if not she will be shunted.

I want to thank everyone that has been praying and the donations that have been given. Our family is overwhelmed by everyone!

Off to Target to get Ms. Lily a wipe warmer...
God Bless!

Update by Sara:

I talked with Zoe briefly before she was called back to see Lily and Ken is on his way to the hospital now.

Her head circumference before the surgery this morning was 42.5, she told me that when Dr. Dilustro went in and looked at the cyst, the hole that he had made in it from the previous operation had closed. He went in and made a larger hole into the cyst and inserted an internal drain instead of an external like before. He is optimistic that this may work but if it doesn't then they will discuss the shunt, and possibly only 1 instead of 2.

Bless her heart, she probably was starting to get headache's from the pressure last night which is why she was so grumpy. They are so glad that the operation was planned for today....


Also, since they would never ever "ask" for help I wanted to set up a fund for them to help with all of the bills they are going to endure. She's probably gonna kill me for this but I'm doing it anyway. I told Zoe that when ever anyone offers to help that she needs to learn to say YES! Sooo, that being said, I have set up a ChipIn account for them. If you were wondering if you can help or offer support in any way then this is perfect!!!

Thanks & God Bless,
Sara Haupt

Morning before surgery.

we had a rough night. I don't know if it is the fact that lily has surgery again this morning and will be back at the hospital for a few days. (Praying no longer than that!) I think that she isn't feeling well. Her head is larger and her fontenal isn't as soft as it was. ken and I have noticed her holding her face/head a lot over night. I wonder if her head hurts. :( Sweet baby! Anyway, I am grateful that today is the day of her surgery. I pray that God gives Dr. Dilustro and staff all that is needed to do his work. I pray for a quick recovery for her and that this will be the last procedure needed to create her normal flow of CSF.

I have emailed my friend Sara with my login and password information so that if I am unable to get here to post, she can supply some updates.

Thank you for all of your prayers, they mean SO much to Lily and our family!
God Bless...

Also, I wanted to share another devotional this morning.........

Destiny or destination?

"We declare God's wisdom, a mystery that…God destined for our glory before time began." – 1 Corinthians 2:7


Colonel Sanders, founder of Kentucky Fried Chicken, was sixty-five years old when he lost everything he owned. He had a tiny chicken shack on the side of the road. Then a major highway came through the area and completely bypassed his little restaurant. All he had left was a recipe for fried chicken.

He didn't plan to found a billion-dollar restaurant chain, but when Colonel Sanders was stripped of what little he had accumulated over the years, he considered his options, decided he had something of value, and used that to take his next step.

You don't decide your destiny. Things happen. Outcomes occur. All you decide is your next step. Then God uses that to craft the destiny he has in mind for you. When you live in the Spirit, God directs your steps in ways you cannot imagine!



* * *
"You don't decide your destiny. Things happen. Outcomes occur. All you decide is your next step." Is that where you feel you are today? What are your options? What is something of value you still have? Given that much, what do you think your next step might be?

Surgery is a go for tomorrow

Lily had another ultrasound this morning and saw Dr. Dilustro. She is bigger today than when he saw her this past Monday. I can see the head circumference increase so I am not surprised. He is going to do another Endoscopic Fenestration. He said that this time he may go in through a different route. He may drill another hole or two elsewhere in her skull and see if he is able to get a better angle on the cyst. He did say that she is draining some on her own. He said that it has almost taken a month for her head circumference to increase in size. He may leave an internal catheter in case he needs to go and take off more fluid later. He said that if he decides to do this and the procedure works then he will go back in about a year and remove it. So, please pray for Lily and our family that this procedure is a success and that there are NO complications or future surgeries. She will be admitted to the hospital tomorrow after surgery and we are hopeful that her stay will be minimal. He said that if this time isn't successful then he will have to put a shunt in.

Her surgery is scheduled for 9:15 am and I have to get her to the hospital by 7:15 am. It is going to be a very long day and I'm not sure when I will have an opportunity to post. I will bring my laptop to the hospital but the last time I was not able to connect. I will post when I can.

Quick Post

I went to my original OB yesterday (not the specialists from EVMS) for a 4 week c-section check up. EVMS told me that I could just follow up with him. when i arrived to the office everyone was excited to see me and promptly asked how Lily is doing and where she was. Ken was off and it being so cold, I decided to leave her home. (I did take photos with me though) The ultrasound tech came around and gave me several hugs, she was so sweet. She said the day that she had to take the original images was one of the worst days, and then telling my Dr. Eveyone was wonderful. My Dr. came bursting into the room before I even had a chance to get undressed. LOL He was eager to hear about Lily and see her photos. He was so pleased to see pictures with her looking so alert. We had a nice 'visit." He asked me if I felt like he handled the situation ok. He went on to say that delivering news like that is never easy and he wanted to make sure that we were not offended by anything that he said or offered. I told him that I appreciated his honesty and all that he did and that I am so glad that those days are behind us. He went on to say that he is eager to meet Ms. Lily one day soon. So, everything is fine with my check up, I have to wait another 2 weeks before I am able to resume exercising. I am already back at my pre-pregnancy weight. Now, I'd like to lose the extra 13 pounds that I have been lugging around with me. LOL

I also got a phone call from the nurse or the Dr. (@ EVMS) that delivered Lily yesterday. EVMS is a teaching hospital, and they want permission to follow Lily. They requested copies of all of her medical records and one of the Dr.s would like to sit in on her upcoming surgery. Lily is so amazing, people are just drawn to her. I am so excited about her future and what God has planned for her!

I think that she may have giggled for the first time this morning.. it wasn't a cry but it is so hard to tell. Each morning after I change her into her clothes, I put her in her crib to look at all her "friends." This morning she was looking at one of them that moves and make a noise that sounded simular to a giggle. ;) I was also able to get her to follow another one of her stuffed animals with her eyes. ;)

Yesterday, her head circumference looked like it could have been up more. Her fontenal is still soft, and she is still showing no signs of hydro. We have an ultrasound this morning and a appointment with Dr. Dilustro right after. We will discuss the surgery that is scheduled for tomorrow.

I will be back later with an update.