Saturday, January 31, 2009

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. :)

Thursday, January 29, 2009

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. :)






Wednesday, January 28, 2009

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?

Tuesday, January 27, 2009

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!

Monday, January 26, 2009

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...


Sunday, January 25, 2009

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!

Friday, January 23, 2009

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?

Thursday, January 22, 2009

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.

Wednesday, January 21, 2009

1 Peter 4:12-13

1 Peter 4:12-13
Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

Snow day!?

Geesh... Yesterday the weather forecasters told us that we were going to have a "snow event." The majority of schools were canceled as well. (We are not equipped to handle snow in our area) So, I just have to post a picture of this HUGE event.



Only in Hampton Roads! :D

Lily nursed well all day yesterday. I tried to offer her a bottle and she spit out the milk and made a face like it was the Worst thing that she has ever tasted. It was kind of cute. I took a couple of irresistible pics of her too.




My oldest daughter is extremely talented. She has painted some adorable art that matches Lily's nursery perfectly! This is the first one, she has two more to finish.





I have a Doctors appointment today. Just a 4 week check up from my c-section. Tomorrow we see Lily's doctor again and we will find out if her surgery is a go this week or not.

Tuesday, January 20, 2009

Daddy's Little Monkey... :)

We had a good night. Lily is really a sweet baby. This morning while nursing Ken was getting ready to leave for work and came over to give us kisses... he smelt Lily and said, She smells like chicken! LOL.. The girls from work will get a kick out of this! While pregnant when I ate chicken Lily would go "crazy" I'd joke and say that either she loves it or hates it. ;) So, while my friend Sara was in town she brought over a rotisserie chicken. We had chicken sandwiches and then I boiled everything down and made a HUGE pot of chicken and rice soup. We finished up the last of it last night.... Lily has been "wolfing" down her feeds the last couple of days. Its confirmed... She LOVES chicken! LOL.

Here is a new photo that I took this morning. :)

Monday, January 19, 2009

4 weeks old today!

Ms. Lily is 4 weeks old today! Wow.. I can hardly believe it. We went and saw Dr. Dilustro this morning. Yesterday, her fontanel was firmer but her incision site was almost flat. I have never felt a head so much in all of my life! Anyway, she was still eating pretty good and was acting fairly "normal" and I knew that she was scheduled to see the Dr. this morning so I just monitored her. So, her Dr. sent us down for another ultrasound this morning. He agreed that her head circumference is up again today. He liked the incision area. He said that he has confidence in my judgement and he feels that if something is serious I will know. Anyway, the ultrasound showed no real change. Her cyst and ventricles are about the same. (could be up by a tiny amount) So, she is not getting worse but not getting better either. He'd really like to see her ventricles decrease in size. So, right now he has us coming back on Thursday for another ultrasound and a office visit with him to see if there are any changes. If everything remains unchanged then she will have surgery on Friday. He is going to do another Endoscopic Fenestration. Then we have to wait and see again. She will probably be in the hospital through the weekend. He said that if this doesn't get things moving then we will discuss the shunt. I am praying that we see huge positive changes this week and that she will not need another surgery on Friday. In celebration of her being 4 weeks today; I took a video clip of her this morning before her Dr. appointment and a few photos.

video



The weather forecasters are saying that we may have snow tomorrow.... 3 to 5 inches! I'm SOOOOOOOO excited! LOL... Snow is a huge deal around here. If we get 5 inches... everything will be shut down. Please pray that we have no emergencies!

Sunday, January 18, 2009

Yesterday was a wonderful day. I was surrounded by some of the people that I love! :D

Malinda, It was so awesome to see you and the girls! Thank you for driving WAY out here to visit with us! I am looking forward to planning our lunch one Wednesday afternoon! :)
Sara... I can't even begin to express our gratitude for you and Steve. We love "yall!" You are always so thoughtful and I am SOOOOOO glad that you came to visit! I do wish that we lived closer but, God will reveal that plan soon enough. ;) we will be out to see you, the kids and your mom today.
Mom and Louie.. LOVE you guys! Thank you for everything!

Yesterday, Lily was much more alert than ever... She stayed awake a lot and I am pretty sure that she noticed her mobile on her swing. She was very intent on looking at it for about 10 minutes or so. When she was finished, she went into a little of a "meltdown mode." Too much stimulation. :)

I think that her head circumference was up alittle more yesterday, maybe 40cm. (in Dr. Dilustro's office on Thursday he measured it at 39) The site where her incision is was much flatter though. So some of the fluid has come out of there. Maybe the increase is b/c it has drained out of there and is trying to drain by the cyst. We see Dr. Dilustro again tomorrow morning. She is still eating very well, sleeping normally, more alert than ever. Still no "hydro" symptoms.

She has started to make other noises than crying like snorting (Lily-Pug..hehe) and a noise like a horse. Ken calls her a "Ninja-Pooper." LOL She has pooped on me a bunch of times. Breastmilk fed babies poo is so different than formula fed babies. It's a matter of getting and out quick.. like a pit stop! :D

One of my goals for tomorrow is to check into social security. I don't know if she will qualify for anything at this time but, it is worth checking into. She is on my Cobra policy for insurance and I have resigned from my job. With her condition it is hard to align childcare and honestly, I don't feel comfortable leaving her in someone else's care. At this point, I can only trust that God has a much bigger plan and everything is going to be fine.

Proverbs 3:5-8
5 Trust in the LORD with all your heart and lean not on your own understanding; 6 in all your ways acknowledge him, and he will make your paths straight. [a] 7 Do not be wise in your own eyes; fear the LORD and shun evil. 8 This will bring health to your body and nourishment to your bones.

Friday, January 16, 2009

A couple new pics

I took these this morning before her bath. :) I swear when I looked at her this morning I could see how much she has grown. She will be 4 weeks old this coming Monday! WOW.. She is practically a teenager! LOL



Crystal Cathedral Ministries.

I get theses via email everyday....a good one to share!

January 16, 2009

Birth of faith

"Faith…is not from yourselves, it is the gift of God." – Ephesians 2:8


Disappointment's seeds of doubt can burrow, thrive, and threaten to choke out your faith. Where was God when you needed him? Why hasn't the dream he gave you succeeded? Did you hear him wrong? Did you lack the skills? Did he abandon you?

Faith isn't faith until it's tested. Faith bridges the gap between the circumstances that are true today and God's eternal truth. Faith carries you through tough times believing they will pass and that you will emerge to see the beauty that was part of God's plan all along.

How do you keep believing when you see no results, or worse, when no miracle happens, and God takes a loved one home too early for your liking? Then, you make a choice—to believe anyway. Nurture faith today by saying, "I believe! I believe! I believe!"

Thursday, January 15, 2009

Surgery canceled again!

What a day! I started about 4am. Lily woke for a feed and decided that she wanted to stay awake until about 5:30am. So, I decided that I should probably stay up and get everything ready for our day. She started with a 9:45am appointment with her pediatrician. She is now up to 7lbs and 13oz. She is 20 1/2 inches long and her head circumference was between 38.5 and 39cm. They gave her the second series of her Hepatitis B vaccine while there and wrote for a PKU blood test. (we'd need to take care of that later while at the hospital) We then headed over to the hospital for her CT scan and then an ultrasound of her head then upstairs to see Dr. Dilustro. He reviewed the scans with us and said that her ventricles are still about the same and the cyst is still the same. he felt her head and it is still soft. He asked if she was having any symptoms, (vomitting, irratability, high pitch cry, or poor feeds) None to all of the above. She is feeding very well. She has been a little more irritable but, I really think that this is normal newborn stuff. So, he decided to cancel her surgery that was scheduled for tomorrow. He said that she is not typical. He doesn't like the size of her ventricles but with her showing no symptoms he is wondering if this is just normal for her. That statement was a little scary b/c there is a lot of fluid visible and minimal brain tissue. I asked him about compression and he said that the tissue could be there and just not visible. I asked him if she could grow up and be "normal" just the way she is and he said yes. (That is good news) So, we wait a while longer. We are to return to see him on Monday. He told me to call him over the weekend if anything changes. So, we continue to wait. I am NOT complaining. I am still praying that God heals her completely! She is such a sweet baby even when she is screaming at the top of her lungs. LOL

I am looking forward to tomorrow... NO errands or appointments now that her surgery has been canceled/postponed! Relief... I am looking forward to just "hanging out" with her. Today was so hectic that she had a coupe of melt-downs. :(

I will be sure to take new photos tomorrow!

God Bless.

Wednesday, January 14, 2009

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!

Tuesday, January 13, 2009

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)

Monday, January 12, 2009

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!

Saturday, January 10, 2009

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! ;)

Friday, January 9, 2009

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!


Thursday, January 8, 2009

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.

video

I'll post new photos tomorrow.

God Bless!

Wednesday, January 7, 2009

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.

Tuesday, January 6, 2009



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.
'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.

Monday, January 5, 2009

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.

Sunday, January 4, 2009

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!

Saturday, January 3, 2009

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. :)

Friday, January 2, 2009

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:

Thursday, January 1, 2009

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!