Wednesday, December 31, 2008

Happy New Year's Eve!!!

It was a joy to spend time with Lily today. We are blessed everyday but, it is always nice to see her more interactive. I don't think that she felt very well yesterday. Her feeds were poor/off and she slept the majority of the day. Today, she was back to a better schedule and drinking about 2oz at each feed. When we arrived to visit her today, I walked in and said her name and immediately she began to stir and opened her eyes. I was able to feed her again today. She spilled about 7ml of fluid. (a minimal amount) We were told that Dr. Dilustro will decide tomorrow on what to do with the drain. He is thinking about closing it off again. I'm not sure when she will have another CT scan.

Well, That is all for today. Here is a photo that Ken took today. :)

Tuesday, December 30, 2008

Today was a pretty quiet day. Lily did get upset before we made it up to the hospital and spilled about 20cc of CSF. When we arrived we were a little surprised by the amount. (Or the way that it looks in the bag) It is supposed to be a clear and straw in color. Her's was straw colored and red. Meaning there is blood in the fluid. We were a little concerned but the nurse assured us that everything was fine. (Easy for them to say..) So, Dr. Dilustro popped in and the first thing out of his mouth was, "Perfect, the drain is doing exactly what it should be doing." I asked him about the blood and he stated that it is the old blood in her ventricles coming out and that is good. So now the plan is to watch her and this for a couple of days. It will depend on what happens on what he will do next.

So, that is where we are. I miss holding her. But, I do get to feed her in her bed and change her diapers. :)

Well, I am off to plan out our dinners for the month of January and write up the grocery list so that Ken to do that first thing in the morning.

God Bless!

Monday, December 29, 2008

Wow.. what a day. I think that I am more emotional than normal. Might have something to do with all that is going on, hormones, lack of sleep, and having a c-section a week ago.

We arrived at the hospital and the CT had been done. We had to wait a few hours for the results. The nurse did assure us that she is still stable and not to "worry." Dr. Dilustro would be over to speak to us. He made it by after lunch. I knew that he didn't think that it was an "emergency" b/c otherwise he would have been in touch asap.
Anyway, the CT revealed that the cyst and the ventricles are a little smaller. (this is good) But, The fluid was coming out from around the drain site. He was hopeful that by keeping the drain closed that this would force any pressure to cause the cyst to drain. Instead the opposite was happening. It was trying to come out the other way. Now, the fluid only comes out when she is upset which adds pressure to her head.

He decided to open the drain and attach a vacuum to allow the fluid to flow and they will also be able to monitor how much fluid is being lost. This morning her fontanel was deeply sunken in as well. We don't know what the next step will be yet. we have to wait and see what happens next. He had explained this to us before she was born. He is really trying all other options before having to shunt her.

So far this evening she is happier. I'll be calling the hospital shortly to make sure that everything is still going smoothly.

Please keep praying... I wouldn't call this a set back just a reminder that we have a long journey ahead.

Please pray........

Overnight there was more fluid drainage than usual; They are going to do another CT scan this morning. this could be normal... or not. I will post when I am able... I am waiting for Ken to pick me up, he went to the hospital early this morning. We will probably not be home until tonight.

"The Lord will fight for you, and you shall hold your peace." – Exodus 14:14 (NKJV)

Sunday, December 28, 2008

Not much to report.........

Lily was under and on top of the "billi" lights today. We were not permitted to remove her "batman" mask. They are trying to knock the last bit of jaundice out of her. Her over all color was much better today.

They also started her back on a little oxygen. She was hovering around 88-92. The nurse said that sometimes the lights can affect the sensors that detect the oxygen.

Today was a little bit of a hard day b/c she slept most of the time we were there and we could only see part of her face. I guess I am being "greedy." LOL

She is still taking her feeds well.

Thank you to those of you that visited today.. it was great seeing you all! God Bless...

I wanted to add this message that I received in my email:

Mountains into Miracles

By Robert H. Schuller

"Praise Him for His mighty acts. Praise Him according to His excellent greatness." – Psalm 150:2 (NKJV)

Early one morning during a session of our Institute for Successful Church Leadership, a minister from Minnesota was suddenly paged to take an emergency call. He was told that his three-and-a-half-year-old son had fallen into a swimming pool. His wife had lifted the little boy out of the pool and applied mouth-to-mouth resuscitation to his apparently lifeless body. By the time the ambulance arrived, the boy was beginning to respond.

The whole audience of four hundred ministers joined me in prayer for that little child. And what a great moment it was at the closing convocation, during the dedication service, to see the little lad and his parents come forward to kneel at the front of the church. I don't think there was a dry eye in the entire church.

After the service, the father told me that when they arrived at the hospital, x-rays showed that there was water in his son's lungs. Several hours after we had all joined in prayer, they x-rayed his lungs again and found no water present!

The doctor called it "a miracle." And it was! For it only takes you and God to make a miracle.

For every mountain there is a miracle.

* * *
Thank You, God, for the mountains in my life that You and I are turning into miracles!

Sunday December 28th

Good morning all....

We are headed up to the hospital later this afternoon. I just called and got a check on Lily. She had a pretty uneventful night. They are getting her re-established to her feeds. She has been taking about 60ml (2oz) every 3 or so hours. Good thing my milk is in and I am not having issues in this area. She has available "back stock" at this time. LOL Due to the surgery, pain meds, anesthesia, and not taking feeds she is jaundiced again. They have started her back on light therapy. we were told that once she is no longer under the lights she will be able to wear clothes! The nurse said to bring some clothing in that way they can begin to introduce this to her. Dr. Dilustro came by to see her this morning and changed her dressing, there was a little drainage but he is pleased with it. They have changed her neurological checks (pupil size, making sure there is no vomiting, lethargic, or seizures) to every two hours. They are not measuring her intracranial pressure b/c she is not showing anything abnormal neurologically. Praise The Lord!

Saturday, December 27, 2008

So sweet

Ken and I feel SO blessed to have Lillian in our lives. This afternoon she was more "animated" than she has been since her birth. She appeared to be more alert and is eating better.

I don't have really have any additional updates except we throughly enjoyed our time with her today. :)

Update from Surgery:

Yesterday evening Lily's pupils were a little enlarged, they were at a 4 and "normal" is a 3. Dr. was not overly concerned with this b/c of the surgery and the nature of the surgery. She was groggy through out the night and not interested in feeds. About 3am they gave her some pain meds b/c she was appearing to be a little uncomfortable. She had some drainage from the external drain and the Dr was called on that and again he was not really concerned with this either.

As of 10 am this morning:

They took her for a CT scan this morning to check the size of the cyst. The Dr stated that the cyst has shrunk some (this will be a gradual process.. terrific news!) he noted that there is a little blood but said that the amount is ok and he is not concerned with it at this point. He removed the dressing that was around the drain and replaced it with some dermabond glue to eliminate the discharge. (He confirmed that this is not CSF.) The dermabond is some strong stuff, that is the glue that they used to close my c-section incision instead of stitches or staples.

She has been moved off the NICU and into the PICU (pedeatric intensive care unit) b/c the NICU is unable to messure the pressure in her head. They are set up like a emergency room. Several beds (about 15-20) in one room with curtains around the spaces. They do have a few closed in rooms with sliding glass doors.. Thats where they have her.

I'll post more as it comes.

Friday, December 26, 2008

Surgery Update

Quick update...

Lily's surgery was this morning. Everything went well and there were no complications. She had a few apnea reactions (forgetting to breathe) when coming out of the anaesthesia. They "nudged" her a few times and she remembered. Dr. Dilustro said that he was able to poke a large hole in the cyst and he drained some of the fluid away through the external port. (He did a CT early this morning to ensure that there were no changes and noted that there was a little more fluid so he felt like doing the surgery today was the best thing) now we have to wait and see what the cyst does. We are praying that it doesn't cause a blockage or refill and that normal flow is established. Next step after that would be the decompression of brain tissue. Please continue praying.

Proverbs 3:5 (King James Version)
Trust in the LORD with all thine heart; and lean not unto thine own understanding.

Thursday, December 25, 2008

Merry Christmas!

Merry Christmas from the Barnettes. ;)
I have better photos on the camera from the last several days that I need to find time to post.

Lily has developed jaundice. They currently have her on light therapy. Her levels increased a little today and they were going to add another light tonight. She is still scheduled for surgery in the morning. Please pray for her. Her Dr. is trying to break up this cyst.. Please pray that this is a success and he is able to eliminate it quickly without it returning. we still have continued prayers for her brain tissue to become uncompressed.

Once again... our family would like to thank everyone!

God Bless!

Lillians Birth 12/22/2008

Wednesday, December 24, 2008

I'm home... Lillian is still at CHKD

Merry Christmas Eve. This year we have many things to be thankful for. I'd like to thank each of you. Your thoughts, prayers, calls, emails, cards, flowers and visits have been very much appreciated.

I was discharged from the hospital today. I could have stayed another day but was looking forward to coming home. We live about 15 miles from the children's hospital so I feel it would be good to come home. We are getting ready to head back to the hospital for a little bit.

I finally got a photo of Lily with her eyes open!

Tuesday, December 23, 2008

12-23-2008 MRI day........

Here is a photo of me outside the hospital yesterday before Lillians arrival. (Yes, my eyes appear to be Today y that big ole belly has shrunk... I still look like I'm about 4 or 5 months pregnant. The doctor told me that they ended up doing a internal vertical incision for the c-section and the external skin line is horizontal. If we decide to have children in the future it will be up to the delivering doctor on future c-sections. I guess once a vertical is done then they like to stay on that path for medical reasons.

Here is another c-section prep picture:

Ok onto today's news... Ms. Lillian was scheduled for an MRI this morning at 10 am that was pushed to 1pm. They had initially decided to hold all feeds until after this test but then changed their minds and went ahead and started her on formula. I wanted to breastfeed or at least pump milk for her. The lactation consultant never really arrived until this afternoon after one of my Friends showed me how to do it. Back to my point... This morning they stopped her feeds at 5am in prep for the MRI b/c they wanted to sedate her a little.

Ken, Tori and I went with Lillian down for the MRI, after about an hour of waiting Dr. Dilustro came out and said that it is what he thought it was.. an Arachnoid cyst causing the blokage. He said that he wanted to finish reviewing the scans and would meet us in our room to discuss it further. They took Lillian back to the NICU and the nurse said that she was very worked up and really wanted to eat. She was so wound up that she knew that they could not have sedated her to much. I guess they hold off on feedings after this is done too. They went ahead and fed her b/c she was so active and worked up. By this time Ken, my mom, and her boyfriend had already called over and asked if she had returned and if they could come over. (My mom still hadn't) seen her. Well, she stopped breathing and they had to hook her up to oxygen. They said that this is an apnea reaction and it can happen with the sedative and then with food. They were keeping her on oxygen for the remainder of the night and hold off on feedings.

Back to Dr. Dilustro and the MRI, Lillian does have a mid-line arachnoid cyst. It is large, the size of a golf ball. (Quite the size for someone so small) He said that he is optimistic. With an arachnoid cyst, the brain tissue continues to develop. (This is good BUT the compression of that tissue can still cause damage) Only time will tell. We will have to look for milestones and etc. He said that if he were to only shunt her then he'd have to place to seperate shunts b/c he'd need to drain the ventricle(s) and the cyst. What he'd like to do is endoscopic fenestration. He'd go in through her ventricles to reach the cyst and basically drain and poke holes to see if he is able to get it to drain. Sounds perfect however, sometimes the cyst can reform and with in hours of them 'destroying' it. He said that he is going to attempt the fenestration and keep the external drain until he is able to see what will happen. He doesn't want to have to shunt her as a first step. Right now her surgery is scheduled for Friday. Please keep her in your prayers....

Ken took a few cell phone snaps of her today. Here they are...

Monday, December 22, 2008

Lillians arrival!

Lillian arrived about 12:50 this afternoon. She was alert and crying. Her apgar scored were 8/9! They were off about her weight... she was only 7lb 6oz, 19.7 inches long. Head Circumference was 36.5. She is stable and scheduled for a MRI in the morning. We should know more then. Please keep praying.... I'll post more tomorrow..

Change of plans......

Hospital called first thing this morning and they have asked that I get there as soon as possible they have had a change in the schedule and will be able to get to us sooner than 1pm. YIKES!!!

I'm excited and terrified.... No going back now. Please pray for Lily! I'll be in touch soon...........

Sunday, December 21, 2008

-Jeremiah 29:11-13

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart." -Jeremiah 29:11-13

Saturday, December 20, 2008

Count Down begins.....

In two days life as we know it will be completely changed! Friday, I went to work... and Monday marks the first weekday of my "unemployment" and the birth of our sweet Angel.

I have to admit, I'm terrified. I continue to pray for Peace, Strength, Clarity, and Healing. I know everything is in Gods hands, he has control but, I still find it difficult to let it all go. I suppose it's all part of that human thing.

I am enjoying the last few days of being preganant, the heart burn, back aches, and feeling her move with in me. Right now, I know that she is safe, and not in any type of pain and that eases my mind some. It's difficult b/c the doctors will not even speculate on what to expect once she is born. I pray that she is strong, breathing on her own, and ready to amaze everyone. I have no doubt that she is meant to be here on this earth.... She has already been such a blessing in our lives. I can't wait to kiss her sweet pouty (Angelia Jolie.. hehehe) Lips.

Well... I need to run, I have SO many things to do today... Thought I'd share a recent photo...

One day shy of being 37 weeks.....

Thursday, December 18, 2008

Thursday December 18th update:

We went to EVMS today. They did another ultrasound and it appears that her ventricles measured 34(each) two weeks ago and today they measured around 37. The Dr. also said that the area that they believe is the cyst has increased some as well. Her head measurements are off the charts but they think they are around 41 or 42 weeks and two weeks ago they were 39-40. Her abdomen is measuring in the 98th percentile, arms and legs in the 50th percentile. Her heart and etc. all look great still and they could see her breathing. She weighs about 8lb 11oz. The Dr. that we saw today was aggressive about getting the C-Section date scheduled. With the Holidays coming she doesn't want to leave anything to chance. She likes for situations like this to be scheduled early in the week instead the end to ensure there is a full staff available. It was decided that they are doing the C-Section on Monday 12/22/2008. Ironically, 12/22 is also the date of my Dad's death... Five (5) years. I am not "weirded" out by this in the least. Everything is with purpose. My daughter Victoria was born on her great-grandmothers birthday. Typically, we celebrate my dad's life on the 22nd. Now we will have something else to celebrate.

I have to admit, I'm very scared. I want so badly that everything goes well with her birth and that the surgeons are able to help her quickly. The dr. that we saw today would not even begin to speculate on what to expect from her when she arrives. All she could say is that I have one of the best surgeons doing my surgery and one of the best for Lily.

I think that we will be adjusting her name. I had stated many months ago before knowing anything about her condition that if she was born on December 9th (my dad's birthday) or December 22nd (the date of his death) that I would either name her Danielle or add Danielle into her name. We have gotten so used to calling her Lily that I think that we are going to go with Lillian Grace Danielle. I will know for sure once I see her sweet little chubby face.

Tomorrow is going to be a emotional day. I am going to be packing up all of my things at work and don't know if or when I will be able to return. I know God has a plan, right now it is just so hard to trust.

Please continue to pray for our family and Lily.

No one will be able to stand against you all the days of your life. As I was with Moses, so I will be with you; I will never leave you nor forsake you. (Joshua 1:5)

Monday, December 15, 2008

Met with the pediatric neurosurgeon

I went and met with Dr. Dilustro. (CHKD Neurosurgery) He was very nice, compassionate and TOO the point! I really liked that about him. He reviewed the scans and asked what we had been told. I explained that we were told hydrocephalus with the cause possibly being an arachnoid cyst. He then asked if anyone used the term Hydrancephaly? ( Here is a link to an article about it: ) I told him that when the receptionist from Dr. Whites office was making the appointment she used the term b/c it was written on the paper and Dr. white said, no, no, no, this is Hydrocephalus. There is a HUGE difference between the two. Dr. Dilustro, said "I agree with Dr. White." Hydrancephaly is where there is little or NO brain tissue and they are able to see clearly brain tissue on Lillian. (Its compressed)

So, he explained to me what to expect after her arrival as far as what they will do. He said that as soon as she is born, he will evaluate her. If the fluid on her brain is making her sick then he will place two tubes with an external catheter to drain some of the fluid away. While he does this then he will place dye in and they will do an MRI. It depends on what they see on what they do next. If the dye stays isolated to the area with in the cyst then he feels that it is the cyst causing an obstruction and he may be able to break up the cyst without placing a shunt. (The fluid should flow freely) If the dye spreads then the cyst is deeper and they need to place a shunt to ensure proper drainage. Now if she is born and is not "sick" from the fluid, they will skip the external catheter, do the MRI and proceed from there. We will still not know the extent of damage done or her prognosis for months to come. (Due to the compression of her brain tissue) He went on to say that she may remain at Sentara or she could be transferred to CHKD. I guess it will depend on her particular case and etc.
He said to make sure that once we have the C-Section scheduled that he is told the date so that he is able to make arrangements. We return to EVMS on Thursday for another scan, and my OB appointment. I think we will finally schedule the date of the C-Section. So, I will post again then... I am continuing to pray that her ventricles remain stable.

I am SO grateful that we live in an area that we have specialists available to us!! I have read so many blogs where families have to travel hours away to get the required care.

"Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit." – Romans 15:13 (NKJV)

Wednesday, December 10, 2008

Part two....

Met with the pediatric Neurologist this afternoon. It went pretty much like I thought it would. No definite answers.. alot of "could be's." He gave us a few different scenarios but does see a cyst and stated that could be causing the obstruction. He said that it was a positive sign that last week her ventricles showed no growth and that could mean that the pressure in her head is balanced out and some of the fluid is getting through. He also said that right now her head is measuring that of a newborn baby. (or 40 week/term) So, her head is enlarged but not "grossly." Keep in mind, I am already measuring like I am 38-39 weeks.. and I know that is not just from her head. I asked about her weight and he said that some of the fluid could be adding onto her weight but it shouldn't be much.

We have another ultrasound scheduled for next Thursday and he said that he hopes to see no growth in the ventricles then as well. (I know that this WILL be one of my prayers!) There is no way of telling how deep the cyst goes but it is a good sign that she responds to external stimuli (music, her daddy's voice) He wants us to meet with a Neuro-Surgeon on Monday. This is mostly for an introduction so that we know who they are when they take her away after she is born. I don't think that we will have any additional answers from them..

I think that he'd like for her to be delivered in about two weeks (via C-Section.. he wants NO additional pressure on her head or possible complications) as long as nothing comes up before hand. I guess we will know more next week.. if she doesn't try and come before then. I have been contracting all day again today.

Please continue to pray....

Mark 16:17-18 "And these signs shall follow them that believe; In my name . . . they shall lay hands on the sick, and they shall recover."

One down.. One to go...

Well, I just returned from my OB visit at EVMS. I saw a different Dr. this week. I REALLY liked him! So optimistic and compassionate! Let me start from the beginning, I lost 4 pounds in the last week.. They did not seem overly concerned about it. The Dr came in and measured my stomach which is already measuring between 38-39! Being that I have never met him, he asked me a several questions about Lily and the size of her ventricles. He agreed that they are VERY enlarged. He then took a peek with the "old fashioned" ultrasound machine in the room and sounded almost positive about the arachnoid cyst. He said that it was Mid-Line and that Dr. white is the best and it's great that we are seeing him this afternoon. He went on to say that he was not a specialist in her condition and he was speaking off the cuff BUT, we should have a positive outcome here. That the brain continues to grow and etc for several years after birth and with technology today and the programs available he feels positive.

We discussed a C-section and I let him know that I would feel most comfortable with that decision and he agreed. He went on to say that if it is up to him, it will not be scheduled until I am at least 39 weeks... The first week of January. He said that if Dr. white feels differently then they will go with his recommendation. So, we go back again next week and have another ultrasound.

I will update more this afternoon after we see Dr. White.

Prayers please..........

Please pray for positive news today.... I'll post this evening on what the pediatric neurologist has to say!


Saturday, December 6, 2008

Just a reminder to myself............

"I am leaving you with a gift--peace of mind and heart. And the peace I give isn't like the peace the world gives. So don't be troubled or afraid."
John 14:27

Thursday, December 4, 2008

December 4, 2008

The ultrasound revealed that Lily's ventricles are the same size they were two weeks ago. This is GOOD. Two weeks ago Dr. Warsof mentioned that we could be dealing with an "Arachnoid Cyst." They are not able to truly confirm this yet but they are seeing what they think is a cyst on the ultrasound. Out of all the cases this would be the BEST case scenario. They looked in detail once again of her heart and other organs and everything else is perfect. They were able to see that she is practicing her breathing. ALL of the results from the amnio were normal or negative... more wonderful news. She is already 6lbs 3ozs!!! (She is 34 weeks and 4 days) So, if we go to term.... roughly another 6 weeks, she could be over 9lbs!

We are still no closer to deciding if they will be doing a C-section or not. We go back in one week just for a normal OB appt. We also see the pediatric neurologist on the same day and he will be able to give us more information, prognosis and etc. We will be seeing the OB every week, but will get another ultrasound the week of the 15th. (if we make it that long)

So, today's visit was good.. but we are still a long way from knowing her long term prognosis and etc. We remain optimistic and full of prayer!

Here is the picture that the DR drew.

Once again our family can not thank you all enough for the out pouring of prayer... Please keep praying.. we have a long journey to go.

God Bless!

Monday, December 1, 2008

Quick Update...........

Well.... I thought we might have had an early "Lily-Bug" today. Thankfully, I was only having contractions and NO dilation. Ken picked me up at work this afternoon and we headed over the SNGH and checked into labor and delivery. They hooked me up to a fetal monitor to check Lily's heartbeat and a contraction monitor. They confirmed that I was having contractions about 2 minutes apart but they were fairly mild. They administered two bags of fluids and then finally gave me a shot of Terbutaline. This finally helped calm the contractions down enough to allow me to be discharged at close to 10:30 pm. While there the genetic counselor came over from EVMS, (She has been wonderful!) She wanted to check on us and let us know that she called to see if anymore of the amnio results had returned and...... the virus scan has come back negative too! This is great news... they are going to continue to let the cultures grow for a few more days to be sure but she said typically it is seen by now. Now we just have to wait for the full chromosomal screen to return. She said that is where they look at all the chromosomes in detail, looking for anything that could be "rare." So far we have had great news with the amnio results. This is good..

We follow up with my doctor on Thursday with another ultrasound to see how Lily's ventricles are now. I am praying that there hasn't been much change.... unless they are shrinking and the brain tissue is revealed. Hopefully, we will know more about "the plan" then.

I'm exhausted... I am headed to bed. Thank you once again for all the continued prayers.... Our family can not thank you all enough!

God Bless!