November 26, 2014 "29 Week Ultrasound"

Today was our 12th ultrasound. I really enjoy being able to see Rayden each week. This week was even more special because our other two sons, Justin and Alex, were able to attend the doctor visit. This was their first ultrasound ever! So educational for future fathers! They seemed amazed with the whole experience. I think they really enjoyed seeing Rayden. Our ultrasound technician, Steve, was amazing as always. He showed us how Rayden now has eyelids. He was opening and shutting his eyes like he was winking at us. So adorable!! He was also moving his bottom lip back and forth like he was grinding his teeth, even though he doesn't have any of course. Alex use to grind his teeth as a child so that was a cute connection he quickly made.

Justin and Alex can always make me smile. They are so crazy. They wanted to take a picture with their baby brother. It's not a very good picture but we didn't have a lot of time to perfect it. I guess this could be Rayden's first selfie, haha!

The ultrasound technicians always have a hard time seeing Rayden's face because he hasn't really moved from the same place. He presses his face into the placenta. Steve didn't give up though. He showed us that Rayden has one foot in his face, almost eating his toes! The other foot was tucked under his bottom. Although this picture looks a little blurry you can see his foot just above his nose.

As Steve was measuring Rayden's ventricles he said the third one was now dilated as well. That, of course, concerned me. He quickly calmed me down by saying it was "to be expected". This vent is in the center of his head. When they perform the shunt surgery at birth it will drain as well. The diagram helps explain. There are two lateral ventricles, left and right. These are the two they are measuring every week. The third vent is in the center and the fourth they can't see on ultrasound. Rayden's ventricles did not change much. The left grew from 24mm to 25mm. The right actually went down from 37mm to 35mm. Dr. Goodnight says this is stable, at least not really growing any. I've come to realize that a shunt is not the enemy. It is a life saving devise that we are trying to except.
Next doctor appointment is December 5th.

November 21, 2014 Post-Op Doctor Visit # 4

Today was our 4th post-op doctor's appointment. We, as always, go into these appointments with such anticipation and hope that things have changed. This visit was no different than any other. Rayden's movements, breathing, etc. were great. He is still breech, and his feet are once again back over his head. His heartbeat was 141bpm. His ventricles have grown again! The left grew from 23mm to 24mm. The right grew from 36mm to 37mm. Just to put it into perspective for you 8-10mm is considered normal. 10-12mm is mildly enlarged or elevated. 12-15mm is severe. So what would you say 24mm and 37mm are? I know last week I said they were considering this to be stable, but that was then and this is now. Dr. Goodnight said that he was going to consult with Dr. Elton, the neurosurgeon. He just can't explain why, after 5 1/2 weeks post surgery, that his vents are not reducing. He says this is not normal, they are extraordinarily large. He also wants us to go ahead and prepare ourselves that Rayden will have to have a shunt within days of birth. This is brain surgery on an infant!! The main reason we did the fetal surgery was to prevent this. Now, they are telling us it's not working and he's going to have brain surgery? Why, why, why is this happening? I'm doing exactly what he said do...nothing!! I just don't understand.... This is so depressing and down hearting to us.

I am trying to draw strength from scripture and prayer, but it's really hard when you are the one walking this path.

Next doctor's visit is Nov. 26.

November 11, 2014 "27 week ultrasound"

Today was our third post-op ultrasound visit. We were so looking forward to seeing Rayden today. I just knew he was not going to be breech anymore because of the way we felt him move this week. One morning he moved all over my belly for more than 5 minutes straight! No, I'm not exaggerating. It was amazing. I also KNOW he has gained weight. Who couldn't have with all this wonderful food that keeps coming into my house, haha! I have put on 7 pounds myself!

Results: Rayden was sitting criss-cross applesauce. He is still considered breech, but NOT frank breech! His feet are no longer over his head. He would not move his hands away from his face so she couldn't get a good picture today. He's getting shy. He got 8 out of 8 points again. The ultrasound technician, Mercy, was able to see his scar a little bit. She mentioned seeing some stitches, but she couldn't see much because of the way he was sitting. His heart beat was 155 bpm. He now weighs 2 lbs 15 oz. I told you he gained weight! This puts him within the 70th percentile for his gestational age.

But, yes, his ventricles did grow. His right ventricle grew from 33mm to 36mm. His left ventricle grew from 20mm to 23mm. Both rising only 3mm each. They are considering this to be stable though because they are growing proportionately with his size and weight and not so rapidly now. Although it would be really nice for his vents to start reducing in size, I am still praising God for this milestone.

Rayden is doing so well and we could not be more proud or thankful. We are trying to praise God through this suffering and believe that God has a plan. Justin, my oldest son, directed me to a sermon recently that used this scripture that really hit home to me. Romans 5: 3-5 Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Sprit, who has been given to us. I believe God has a plan for Rayden and there is a purpose for this so I am trying to hold on to hope and praise God through this suffering.

Michael thought I was crazy for wanting my picture taken in the ultrasound room, but I think it turned out nicely. It gives you an idea of what I see every week!!! I have also been having a craving for Krispy Kreme doughnuts. After my ultrasound we drove up town and got two dozen!! I am even sporting the cool hat in the picture! Now, next week we will ALL be fatter!! Haha!

Next doctor visit is November 21.

November 4, 2014 Post-Op Doctor Visit #2

Today we went for our 2nd post-op ultrasound/doctor's visit at UNC Chapel Hill. Michael's parents, Glenn and Linda, drove me so he was able to work. This visit took a lot out of me because the chairs were so uncomfortable and there was a lot of walking. I get dizzy when standing up for more than ten minutes and my stomach and back start hurting. I felt every single bump in the road on the way back. What a long day.

I enjoyed our ultrasound technician, Denise. She was so funny and explained everything so thoroughly to Linda because we told her that this was 'Nanny's' first ultrasound visit. She even gave her some photos of her very own.

Results: Good news: Rayden received all 8 possible points today! He got 2 points each for tone, movement, breathing and amniotic fluid. He breathed for more than 30 seconds. It reminded me of a child that had been crying for a while and had the 'snubs'. He moved a lot and had the hiccups again.
              Not so good news: His left ventricle grew from 18mm to 20mm. His right ventricle grew from 28mm to 33mm. He is also still in frank breech position (feet above the head).

If you look at the diagram you will see the difference in a normal ventricle and one with myelomeningocele. This build up of Cerebrospinal Fluid (CSF) compresses the brain which is what the fetal surgery was suppose to reduce decreasing the need for a shunt.

We are suppose to be happy about his ventricles not growing so RAPIDLY this time. Maybe next week they will stabilize and then start reducing in size. I am still upset about him being frank breech because I know this may cause him to have extra therapy when he's born. But, here again, his feet were not as high over his head this time so maybe he is starting to stretch himself out. Yes, I am trying to stay positive.

Dr. Goodnight said I was doing well. I'm still taking loads of medication and staring at four walls! I have created a spreadsheet to record my medicine and my phone alarm rings to remind me to take it. I'm sleeping well and eating VERY well thanks to my wonderful church family!! LCC is the BEST!!!!!!

On a lighter note Sunday, Nov. 2, Alex felt Rayden move. His eyes lit up when he kicked and it just melted my heart that he was able to feel his baby brother for the first time.

Next ultrasound is Nov. 11.