Finally... we have the "FISH" results from the amnio.... These results include Trisomy 21 (down syndrome) Trisomy 13, Trisomy 18, and sex chromosomes. They all came back NORMAL and that Lily is indeed a girl! Praise the Lord... one down and two more for the amnio. We hope to have the Viral results back next week along with the rest of the chromosomal tests. We meet with the Perinatologist (Dr. @ EVMS) for another ultrasound and a follow up appointment on Thursday December 4th. So far we do not have a clear reason on what is causing the hydrocephalus. I continue to pray that God will heal her and she will be born cognitive and full of physical ability and completely healthy.
Thank you for your continued prayers! We can not begin to express our gratitude!
Do not fret or have any anxiety about anything, but in every circumstance and in everything, by prayer and petition, with thanksgiving, continue to make your wants known to God.
- Philippians 4:6
Friday, November 28, 2008
Thursday, November 27, 2008
Thanksgiving.......................
Even during this difficult time, we have SO many reasons to be Thankful.
- I am Thankful that I am able to take everything directly to God in prayer.
- I am Thankful that all prayers are heard and answered, even if we have to be patient and wait.
- I am Thankful that God see's the big picture and we get a piece at a time to assist in teaching us along the way.
- I am SO VERY Thankful for my Husband, my daughter, my daughter on the way, my family, and my friends.
- I am Thankful to work at a Great corporation with so many caring and compassionate people.
- I am Thankful for the numerous emails containing powerful prayers and messages.
These are just a few things that I am thankful this Thanksgiving Day.
Ken and I are so looking forward to meeting Lillian. We are excited and scared... some of the same feelings that we would have without knowing about her condition. We are confident that God has a plan, and we are patiently waiting.
Earlier in the week, our Pastor sent an email and he included the following scripture....
“The word of the LORD came to me, saying, ‘Before I formed you in the womb I knew you, before you were born I set you apart”—Jeremiah 1:4-5
Tuesday, November 25, 2008
Tuesday November 25th
Wow, Is it really only Tuesday? Feels like Friday.
Still no test results. I called EVMS today and was told that the lab misread that they were supposed to do a "rapid" FISH test and that most likely we will now not have the results until Friday. However, we should have ALL of the results by then. OK, so no news is good news at this point and leaves more time for prayer.
While on the phone I did ask a few more questions...
Is it possible for Lillian to have seizures or convulsions inside of the womb? It is possible but probably unlikely... I feel her hiccup and wanted to make sure that it wasn't anything else.
Should I be taking steroids to strengthen her lungs? Not yet, During the appointment on December 4th, if the hydrocephalus is progressive (getting worse) then they will probably go ahead and schedule a C-Section sooner and administer the steroids to prepare her lungs.
We have noticed that we are able to stimulate her by touch.. Today, at work I was poking her (gently) and she kicked me back really hard. In Church on Sunday, when the choir was signing or there was music she was extremely active. All positive signs. ...
I continue to pray that God heals her completely, reduces the amount of fluid in her brain, all brain tissue is there and vital and medical intervention will not be necessary.
For with God nothing shall be impossible. - Luke 1:37
Once again, Ken, Tori, Lily and I can not begin to Thank everyone for the out pouring of prayer, and thoughtfulness during this time. It is appreciated more than I am able to express!
God Bless!
Still no test results. I called EVMS today and was told that the lab misread that they were supposed to do a "rapid" FISH test and that most likely we will now not have the results until Friday. However, we should have ALL of the results by then. OK, so no news is good news at this point and leaves more time for prayer.
While on the phone I did ask a few more questions...
Is it possible for Lillian to have seizures or convulsions inside of the womb? It is possible but probably unlikely... I feel her hiccup and wanted to make sure that it wasn't anything else.
Should I be taking steroids to strengthen her lungs? Not yet, During the appointment on December 4th, if the hydrocephalus is progressive (getting worse) then they will probably go ahead and schedule a C-Section sooner and administer the steroids to prepare her lungs.
We have noticed that we are able to stimulate her by touch.. Today, at work I was poking her (gently) and she kicked me back really hard. In Church on Sunday, when the choir was signing or there was music she was extremely active. All positive signs. ...
I continue to pray that God heals her completely, reduces the amount of fluid in her brain, all brain tissue is there and vital and medical intervention will not be necessary.
For with God nothing shall be impossible. - Luke 1:37
Once again, Ken, Tori, Lily and I can not begin to Thank everyone for the out pouring of prayer, and thoughtfulness during this time. It is appreciated more than I am able to express!
God Bless!
Monday, November 24, 2008
Monday November 24th
No updates today. I have not heard anything about the "FISH" test from the amnio. All that is a preliminary findings. We are hopeful that they will return tomorrow and be Negative. We have been scheduled with the Pediatric Neurologist for Wed. December 10th at 2:30 pm. I believe that we will have all the results back from the amnio, and I will have had another ultrasound done by then. We are completely optimistic at this point. So far, the only finding's are that her Ventricles are severely enlarged.
Once again, Thank you to everyone for all the prayers, thoughts and support!
I'd like to share a devotional that Trish at work shared with me today.... This is taken from "Streams in the Dessert."
"Believe ye that I am able to do this?" Matthew 9:28
"God deals with impossibilities. It is never too late for Him to do so, when the impossible is brought to Him, in full faith, by the one in whose life and circumstances the impossible must be accomplished if God is to be glorified. If in our own life there have been rebellion, unbelief, sin, and disaster, it is never too late for God to deal triumphantly with these tragic facts if brought to Him in full surrender and trust. It has often been said, and with truth, that Christianity is the only religion that can deal with man's past. God can "restore... the years that the locust hath eaten" (Joel 2:25); and unreservedly and believing into His hands. Not because of what we are but because of what He is. God forgives and heals and restores. He is "the God of all grace." Let us praise him and trust him. "
"Nothing is too hard for Jesus No man can work like him."
"We have a God who delights in impossibilities." Nothing is too hard for Me. - Andrew Murray
Once again, Thank you to everyone for all the prayers, thoughts and support!
I'd like to share a devotional that Trish at work shared with me today.... This is taken from "Streams in the Dessert."
"Believe ye that I am able to do this?" Matthew 9:28
"God deals with impossibilities. It is never too late for Him to do so, when the impossible is brought to Him, in full faith, by the one in whose life and circumstances the impossible must be accomplished if God is to be glorified. If in our own life there have been rebellion, unbelief, sin, and disaster, it is never too late for God to deal triumphantly with these tragic facts if brought to Him in full surrender and trust. It has often been said, and with truth, that Christianity is the only religion that can deal with man's past. God can "restore... the years that the locust hath eaten" (Joel 2:25); and unreservedly and believing into His hands. Not because of what we are but because of what He is. God forgives and heals and restores. He is "the God of all grace." Let us praise him and trust him. "
"Nothing is too hard for Jesus No man can work like him."
"We have a God who delights in impossibilities." Nothing is too hard for Me. - Andrew Murray
Sunday, November 23, 2008
Mark 11:22-24
Mark 11:22-24
22"Have faith in God," Jesus answered. 23"I tell you the truth, if anyone says to this mountain, 'Go, throw yourself into the sea,' and does not doubt in his heart but believes that what he says will happen, it will be done for him. 24"Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
22"Have faith in God," Jesus answered. 23"I tell you the truth, if anyone says to this mountain, 'Go, throw yourself into the sea,' and does not doubt in his heart but believes that what he says will happen, it will be done for him. 24"Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
Saturday, November 22, 2008
Photos
I have uploaded the latest ultrasound images at:
http://www.caringbridge.org/visit/lilliangracebarnette
http://www.caringbridge.org/visit/lilliangracebarnette
Thank you
Our family would like to extend a HUGE Thank you to all of you. Your thoughts, prayers and outreach have been such a great comfort during this time.
We really can not thank you all enough.
With Love,
Ken, Zoe, Tori and Baby Lily.
We really can not thank you all enough.
With Love,
Ken, Zoe, Tori and Baby Lily.
Friday, November 21, 2008
November 21st..........
Well, we had the amnio this afternoon at 2 pm at Sentara Norfolk General. For some reason, I always thought that they put the needle through the belly button.. OUCH! They don't. They do an ultrasound and find a free area to place the needle. The fluid was clear and without blood. Good signs.
We were able to see the Dr again and I asked him a few more questions.
1. Lillians head size is still with on normal limits but the actual brain ventricles are enlarged. I have read that in many cases of hydrocephalus the head will enlarge to be able to accommodate the fluid. So, that got me thinking if her head is not enlarging could that be a bad sign? He said that it is not a bad sign the thing that they do not like to see is where the head is smaller than it should be.
2. How do we know if the fluid in her head is CSF and not blood? If it were blood then there would have to have been an injury with in the last day or so and then it would dissolve.
While speaking to him he asked if we had enough time to return to the office for more scans. He wanted to take several more 3D scans. They save them in slices almost like a MRI.
They then did a "fetal stress test" all this is a fetal monitor strapped to your belly to check heart rate and if the uterus in contracting. There was some but nothing to be overly concerned about.
We went back to the office and they took us right back... They did several more scans, checked blood flow through the brain, it's good sign that there is blood flow. They checked her heart again and blood flow. Her heart is completely normal. So, they are still trying to figure out what is causing the hydrocephalus.
Dr. Warsof then said that it could be a Arachnoid cyst ( http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cysts.htm ) and out of all the possibilities that is the best scenario. They are going to review the scans and most likely send them to the Pediatric Neurologists to review.
Our primary OB transfered our care over to EVMS and they will now be our primary care givers. We return on Dec. 4th for a follow up ultra-sound and appt. We should have some of the tests back from the amnio in 1-2 (business) days and the rest back in about 5 days. I'm sure that once they have time to review all of the scans from today and have the Peds review them we will hear more then.
We are staying optimistic and full of prayers. I'd like to Thank EVERYONE for being so supportive during this time. We can not begin to thank you all enough!
I want to take a minute and Thank my dear friends Dawn and Jackie.. Dinner was awesome! Thank you SO much!
I am also in the process of setting up another blog at Caring Bridge. That is the blog that I orignally wanted but couldn't remember the name. (Thanks Sara!)
http://www.caringbridge.org/visit/lilliangracebarnette
God Bless!
We were able to see the Dr again and I asked him a few more questions.
1. Lillians head size is still with on normal limits but the actual brain ventricles are enlarged. I have read that in many cases of hydrocephalus the head will enlarge to be able to accommodate the fluid. So, that got me thinking if her head is not enlarging could that be a bad sign? He said that it is not a bad sign the thing that they do not like to see is where the head is smaller than it should be.
2. How do we know if the fluid in her head is CSF and not blood? If it were blood then there would have to have been an injury with in the last day or so and then it would dissolve.
While speaking to him he asked if we had enough time to return to the office for more scans. He wanted to take several more 3D scans. They save them in slices almost like a MRI.
They then did a "fetal stress test" all this is a fetal monitor strapped to your belly to check heart rate and if the uterus in contracting. There was some but nothing to be overly concerned about.
We went back to the office and they took us right back... They did several more scans, checked blood flow through the brain, it's good sign that there is blood flow. They checked her heart again and blood flow. Her heart is completely normal. So, they are still trying to figure out what is causing the hydrocephalus.
Dr. Warsof then said that it could be a Arachnoid cyst ( http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cysts.htm ) and out of all the possibilities that is the best scenario. They are going to review the scans and most likely send them to the Pediatric Neurologists to review.
Our primary OB transfered our care over to EVMS and they will now be our primary care givers. We return on Dec. 4th for a follow up ultra-sound and appt. We should have some of the tests back from the amnio in 1-2 (business) days and the rest back in about 5 days. I'm sure that once they have time to review all of the scans from today and have the Peds review them we will hear more then.
We are staying optimistic and full of prayers. I'd like to Thank EVERYONE for being so supportive during this time. We can not begin to thank you all enough!
I want to take a minute and Thank my dear friends Dawn and Jackie.. Dinner was awesome! Thank you SO much!
I am also in the process of setting up another blog at Caring Bridge. That is the blog that I orignally wanted but couldn't remember the name. (Thanks Sara!)
http://www.caringbridge.org/visit/lilliangracebarnette
God Bless!
November 20th
Today we went to EVMS and saw the specialist. They did another ultrasound and confirmed that she indeed has severe hydrocephalus. The ventricles in the brain should measure about 10 mm, hers are measuring 25-30mm. Almost 3 times the normal size. This is due to fluid. Currently she is 4 lb 12oz (completely normal) and all other organs look completely normal as well. Her stomach and bladder is functioning well. At this time her head is at a normal size but could grow due to the fluid. We will have to have another scan in about 2 weeks to see if we are dealing with progressive hydrocephalus. The Dr. stated that it is hard to say if all of her brain tissue is there and if it will be viable due to the amount of fluid. At this time we have no idea what her prognosis will be.
We are currently working on trying to find out what has caused this. It could be a couple of different things.
Chromosomal (we did not have an amnio done at 18-20 weeks b/c everything was with in normal range) They do not feel this is the cause.
Fetal Virus:
Toxoplasmosis : Cats can carry this virus, poorly washed/cooked or contaminated foods. In adults the symptoms are mild, swollen lymph node(s), tiredness, sore throat..... I went to the dentist on 11/11 and he noted that my left node in my throat was swollen and that week I was not feeling well.
Or Cytomegalovirus: Typically spread through day cares and etc.
Blockage causing the CFS (Cerebrospinal fluid) not to be able to flow. Or the pathway is not wide enough.
We are scheduled for a amnio today after 1pm. They will be able to test for Chromosomal and both viruses. We will not have the results until next week sometime. We have to go to the hospital for this test b/c of the risk of pre-term labor.
We are also in the process of obtaining an appointment with a Pediatric Neurologist, the same group that Tori goes to. Sometime next week, and he will evaluate the images further, decide if she needs a Fetal MRI and will develop a plan of action/treatment after her birth.
Her Birth:
Has been moved from Chesapeake general to Sentara Norfolk General, CHKD is right there and will eliminate transport and us being separated. I will be able to visit her while staying at SNG.
We asked about any benefits with taking her early to relieve the pressure on her brain but they find that only causes additional complications b/c then on top of her condition she has possible pre-term issues.
Most likely, I will be scheduled for a C-section around 38-39 weeks. The Pediatric Nero will evaluate her promptly and will decide when to place a shunt to begin drainage. At this time we have NO idea what her prognosis is.. She could come out of all of this will no or mild limitations, or severe mental and Nero limitations or could not survive at all.
Our families emotions have been all over the place... We ARE placing all events in Gods hands and know that he knows the outcome already and he will prepare us for this journey. He has blessed me with a WONDERFUL man that is so supportive and amazing. We have many new photos of Lily and I will work on scanning them and posting them.. She is an Angel.
I want to Thank all of you for your support and Prayers through all of this.. Please keep praying. I will post an update today after the amnio...
Please feel free to call us anytime... Love to you all!
We are currently working on trying to find out what has caused this. It could be a couple of different things.
Chromosomal (we did not have an amnio done at 18-20 weeks b/c everything was with in normal range) They do not feel this is the cause.
Fetal Virus:
Toxoplasmosis : Cats can carry this virus, poorly washed/cooked or contaminated foods. In adults the symptoms are mild, swollen lymph node(s), tiredness, sore throat..... I went to the dentist on 11/11 and he noted that my left node in my throat was swollen and that week I was not feeling well.
Or Cytomegalovirus: Typically spread through day cares and etc.
Blockage causing the CFS (Cerebrospinal fluid) not to be able to flow. Or the pathway is not wide enough.
We are scheduled for a amnio today after 1pm. They will be able to test for Chromosomal and both viruses. We will not have the results until next week sometime. We have to go to the hospital for this test b/c of the risk of pre-term labor.
We are also in the process of obtaining an appointment with a Pediatric Neurologist, the same group that Tori goes to. Sometime next week, and he will evaluate the images further, decide if she needs a Fetal MRI and will develop a plan of action/treatment after her birth.
Her Birth:
Has been moved from Chesapeake general to Sentara Norfolk General, CHKD is right there and will eliminate transport and us being separated. I will be able to visit her while staying at SNG.
We asked about any benefits with taking her early to relieve the pressure on her brain but they find that only causes additional complications b/c then on top of her condition she has possible pre-term issues.
Most likely, I will be scheduled for a C-section around 38-39 weeks. The Pediatric Nero will evaluate her promptly and will decide when to place a shunt to begin drainage. At this time we have NO idea what her prognosis is.. She could come out of all of this will no or mild limitations, or severe mental and Nero limitations or could not survive at all.
Our families emotions have been all over the place... We ARE placing all events in Gods hands and know that he knows the outcome already and he will prepare us for this journey. He has blessed me with a WONDERFUL man that is so supportive and amazing. We have many new photos of Lily and I will work on scanning them and posting them.. She is an Angel.
I want to Thank all of you for your support and Prayers through all of this.. Please keep praying. I will post an update today after the amnio...
Please feel free to call us anytime... Love to you all!
November 19, 2008 Routine Ultrasound...
I have decided to create a blog solely for updating Lily's condition.
Wed. our family went to the OB for a very routine ultrasound. we learned devastating news while there. On Lily's ultrasound it was noted that she has quite a bit of fluid on her brain. In her 18-20 scan all brain matter and etc. was normal. Our Dr. was very compassionate with us and told us that this is not a good sign. He was unsure of the amount of tissue that is even there because of the amount of fluid. He was calling EVMS and was getting us an appointment for the next day for a more extensive ultrasound.
We left his office feeling scared, and overwhelmed. What should have been a joyus occasion quickly turned to devastating news.
The Dr. gave us two medical contions which really go together, Ventriculomegaly ( http://en.wikipedia.org/wiki/Ventriculomegaly ) and Hydrocephalus ( http://en.wikipedia.org/wiki/Hydrocephalus )
Needless to say we have been through a gamet of emotions. We have no idea what to expect when she is born, if she will survive and what type of condition, surgeries, or the quality of her life.
Wed. our family went to the OB for a very routine ultrasound. we learned devastating news while there. On Lily's ultrasound it was noted that she has quite a bit of fluid on her brain. In her 18-20 scan all brain matter and etc. was normal. Our Dr. was very compassionate with us and told us that this is not a good sign. He was unsure of the amount of tissue that is even there because of the amount of fluid. He was calling EVMS and was getting us an appointment for the next day for a more extensive ultrasound.
We left his office feeling scared, and overwhelmed. What should have been a joyus occasion quickly turned to devastating news.
The Dr. gave us two medical contions which really go together, Ventriculomegaly ( http://en.wikipedia.org/wiki/Ventriculomegaly ) and Hydrocephalus ( http://en.wikipedia.org/wiki/Hydrocephalus )
Needless to say we have been through a gamet of emotions. We have no idea what to expect when she is born, if she will survive and what type of condition, surgeries, or the quality of her life.
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