Doctors Appt Today At Motts Childrens Hospital.

Today we had our first doctors appointment at Motts Childrens Hospital. We met our general OB/GYN and a few other nurses. We then went and had our utrasound. They checked babys spine again and measured the ventricles in her brain. She is measuring 8.4mm which is normal. That was good news. They did say that the ventricles will fluctuate between now and delivery, so things can change. They couldn't get a good look at the spine, little Avery was hiding it. We had a lot of questions about delivery and what to expect the next few months, but we will have to wait to see the pediatric neurosurgeon.Our next appt is on February 17th for another OB appt and an utltrasound. We meet with the neurosurgeon on February 24th. Thanks for all your prayers and support.

Prayers

I have found, myself full of tears today. I feel like Jeremy and I were on vacation, these last 2 days and the child that we were hearing so much about wasn't our own. I felt so strong when they were explaining to me all the details, I never even cried. It feels so real now that I'm home. It makes me sad. I know God is in control and he loves us, but it doesn't make it any easier to go through it.

Tough Cookie

Oh one more thing, little Avery is quite the stinker already. The ultrasound took 2 hours because she wouldn't hold still, they actually tipped the bed so my feet were in the air to push her down, but it didn't work. Then when I went in to the MRI the same thing she wouldn't hold still. It took them 1 1/2 hours, which it usually only takes 20 minutes, so needless to say we have a fighter.

Big Day!

We had our Echocardiogram, which revealed baby's heart was good no problems, we also had our MRI. The Lesion is still at Lumbar 2, and is open all the way down to the sacrum. We did see baby's legs moving, that was great. They told us baby's left foot has no movement though. Baby's spinal cord did split and come back together, its still considered SB just a different kind. We are not canidates for the surgery, which we knew going down there, but we wanted to meet the team of doctors and confirm the severity. The hydrocephalus has got worse but not enough to concern the doctors. They did tell us that baby's movement in her legs could become less because of the spine being exposed in uturo.  Once we are back in Michigan we will meet the team of doctors at U of M and see where to go from there. Thank you for all your prayers.

Philadelphia

we are finally back at our hotel room. Long day, we had ultrasound done today it took 2 hours little Avery did not want to cooperate. The ultrasound revealed a split spinal cord, also called hemi myelomeningocele. The ultrasound tech and radiologist would not go into detail with us. They wanted to wait for us to see doctor tomorrow. Thanks for all your prayers, keep them coming.

Intra utero surgery is not for us

I recieved the phone call today that I have been waiting for. The intrautero surgery does not look like it will happen. They won't do the surgery if you have had a premature birth. We won't give up hope. We are still scheduled to fly to Philadelphia on the 16th, they will run tests and we will still meet with the team of doctors. I am greatful for all your prayers. I will keep you updated as I find out more.

Update

As of now we are scheduled for January 17th to meet the team of doctors at Childrens hospital of philadelphia, we are still waiting for a phone call on Monday to confirm the details. Because our youngest child, Titan was born 6 weeks early, this could cause them to decide that I'm not a good canidate for the surgery. Please pray that they look beyond this and allow us to give Baby Avery this chance for a better life.

Need Prayers

Jeremy and I found out today that the little girl in my tummy has spina bifida. There is surgery that can be done in utero to correct this, but it is very new. There are only 3 hospitals in the country that will do this. We have been invited to meet with a team of doctors from childrens hospital of philadelphia this weekend. They want to do the surgery in 4-5 weeks. After the surgery I will have to remain in philadelphia until baby is born, which isn't until May. Need lots of prayer.