Aug 13 Doc appt and Aug 18th Neurosurgeon Appt

This is a pic of her bubble. They did a 3D pic of it. We have never gotten such a good pic of her bubble.
We just love this pic. She has her foot under her chin. 'Look Dad and Mom, this is my new trick!"

We had a doc appt last week Thursday. They did an ultrasound and they got a really good 3D pic of her bubble on the back of her head. They also got a good pic of her cleft lip. It was so cute, she had her foot all the way up to her chin. We were laughing as she had her hand there and she was moving like crazy and we were able to see her move her foot up to her chin. It was like "Look Mom and Dad, See my new trick?" :)

Her bubble has NOT grown between these last 2 appts. (We go every 2 wks now) PTL!!! She weighs about 3 lbs now. They also said that this could affect her vision and could be blind. The ultrasound tech told us that she has a patient right now that is in her 20's who was born with the same problem that our little girl has. She said that she is healthy and pregnant with her first child. She said,' I just want you to know that yes, it could end bad, but that there are some who make it!'

We had our appt with the neurosurgeon on Aug 18th. We were very anxious to go. When we got into the room and the nurse proceeded to tell us that the doc office forgot to send pics over. All the doc sent over was where it was located, how big the bubble was, and that she is growing normal and her amnio showed she had nothing else wrong but the 2 problems. Lenny and I just looked at each other. We thought, Great, we have waited exactly 3 months to talk to this doc and now he cannot even tell us anything because all the info wasn't sent over.

Dr Baig came in and was talking to us about baby girls problems. He said, 'It is ok, I do not need an image to tell you that, this bubble is NOT going to kill her. Yes, it has brain tissue in it and yes, it has brain fluid in it, but it isn't that big.' He told us that he will more than likely have to put a tube in her brain down to her stomach to drain the extra fluid that she has in one part of her brain that keeps building up. He also said, 'I cannot tell you 100% that she is going to make it as after her brain surgery she could get infection or bleeding, but I am tell you that anyone who has brain surgery runs that risk.' He told us that 'yes, she might be mentally challenged and slow at things, but we will not know how bad til later in life.' He said that he wants to wait til she is a few days old to do brain surgery as it is very traumatic on a baby to be born and to be rushed right into brain surgery would not be good. He said the ONLY way he would do surgery right away is if the skin on her bubble is to thin and it might break. During surgery they will take what is in her bubble and put back in her head. They might also put that tube in from her brain to her tummy if he thinks that is necessary. They will have to close up her skull as it has an opening right now that goes into the bubble as well. So they have to reconstruct that part of her skull. I am not sure what they use to close it up. The doc for the cleft lip/palate told us that they use bone from her hip for the mouth surgery, but this doc didn't tell us where they take it from to fix the skull. Oh well. He repeated a few times about her probably being mentally challenged. Lenny looked at the doc and said, "Doc we DO NOT care, we are ready for whatever God gives us. We are just so excited right now that we will be able to take care of her if shes mentally challenged or not.'

After 3 months of bad news, we got some REALLY good news. I asked if we could start getting a few things for her and he said, 'Sure, I don't see why not.' YES!!! I have been waiting for 3 months to hear those words. Lenny said that he doesn't want us to go crazy yet as she will be in the hospital for a while and we will have plenty of time to get everything then. So, I am ready to buy just the essentials. But VERY excited to even buy that!!!! She will be able to wear her own clothes in the hospital, so I'm excited to get a few items for that.

God is SOOO good! He has allowed the bubble NOT to grow much. He gave us one of the best Doctors! He gave us many miracles already and we know he will be beside every step of the way!

They are wanting to try and get us to Oct 7th or 8th and then do a c-section. They said that that is the goal unless baby girl has other plans of trying to come early that we do not know about yet. :) I am not due til Oct 15th so Oct 7th or 8th is right on track.

God is working in our lives and in her life. He is showing us that He can do great things! We just need to trust Him! We want to Thank you ALL for praying for us! Please continue to pray for us/her for complete healing IF that is God's will. We are so excited! God is a Great God!!

I am sorry it took so long for us to write this. We started school this week and had orientation for Kindergarten and then open house for the other 2. I started homeschooling my oldest 2 this week and we also started Football. Then the regular black belt and swim lessons and then daycare during the day. We are also getting ready for a garage sale this week and I have been trying to set that up. We are a little lighter on our feet this week as God has lifted our load with this news!

We are also praying for those of you who have your trials and tribulations also. We know we are just a speck on this earth that has problems and that there are many out there with bigger trials than us. We pray for those that we know about! At times, I know that we all think God has given us more than we can handle but he never does. He might bring us to our breaking point and then lift us up to show us, "Hey, lean on Me, I am here, all you have to do is trust me and ask." We have given ALL our problems to Him and put them in His hands. He has shown us that he can do Great things. Better than we can even though we think we could do better!

Our next appt is this Friday but we will not have an ultrasound. So, I will probably not update til our Sept 11th appt.

Thank you again for all your words, e-mails and cards! It is wonderful to know how many people are out there praying for us and for our little precious girl! We have filled almost a 2nd book which is filled of all the cards, e-mails and posts! THANK YOU!!!!!!