Friday, July 7, 2017

Aneurysm in the Vein of Galen

It was June 26th and I was sitting in my truck trying to compose myself. I knew I had to call Josh, but I was having a hard time trying to figure out what to say. I finally called, he answered, and I uttered the three words I had hoped I would never have to say, "He's not okay"

Just a few days prior, I was happily nesting and preparing for the arrival of our little one. I had decided that it was a good time to go to Babies R Us and buy the rest of our Baby Registry (at a 20% discount!) and after that I returned home to wash and fold all of the baby clothes.


[Baby clothes - organized by size]

[Baby's slide]

[Baby's hallway/room - we put up blackout curtains to help him sleep]

On June 26th I headed down to the hospital in Peoria so I could do my 33 week sonogram and meet with the GD Doctors. My GD has been going really well and because my numbers are so great I only have to prick my finger 4 times a day, 3 days a week (instead of 7 days a week). I figured since everything had been going to well this would be a routine check up.

[If you look closely you can see all the little bruises on the tip of my thumb from all the pricking]

I checked into the hospital, took my belly photo (we don't have many mirrors at the Raptor so it's hard to get a good belly shot), and was called back to get my vitals taken.


My vitals were great (I've always had low blood pressure) and the scale showed I had only gained 10 lbs during my entire pregnancy.

I was then taken to the sonogram room. A nice technician did my sonogram and she didn't even mind that I had to turn on my side when I got nauseated. She kept commenting on how cute his toes were (his second toe is longer than his big toe - like mine!) and then she did some 3D pictures of his cute chubby face (cheeks like his dad!).



[Long toes!]

After the exam was done the technician told me not to wipe the jelly off my belly because the Doctor wanted to take a look. I asked her what his weight was and she told me 5 lbs! I was worried that the Doctor was concerned about his weight so I started texting Josh and my mom asking them how big babies are in our families. Turns out both sides have pretty big babies!

Dr. Leonardi, High Risk Obstetrician, then came in and asked me if he could take a look at my baby. I said he could, he did a quick exam, helped me wipe the jelly off my belly and then told me that we were going to go to another room so we could talk some more. 

I was taken into a small room and left there. As I was waiting all I could think of was that there was a problem having to do with my GD. But I was managing it so well and doing so great.

After a few minutes the GD nurse, GD Doctor and Dr. Leonardi came in. 

Dr. Leonardi sat right across from me and told me the news.

He told me that baby Carlson has an aneurysm in the Vein of Galen. He emphasized that it wasn't my fault and the condition is rare and not genetic. 

He then told me that I would need to deliver at the hospital in Peoria (even though I was supposed to deliver in Ottawa - 15 minutes from where we live) because they had a NICU and a lot of Doctors who specialize in this kind of situation.

He explained to me that his vein is dilated but his heart looked healthy and strong. I honestly had no idea what he was talking about. I started to panic and cry.

"Why are you telling me about his heart? I thought the aneurysm was in his brain?"

He explained to me that if too much blood pools in the vein it can take blood away from other parts of the body. Mainly, the heart. Babies that are born with this condition can go into heart failure so they need to really watch his heart and other organs.

The doctor made sure that I had my questions answered and that I had calmed down a bit before they discharged me. I was also told that I would be meeting with a pediatric Neurosurgeon and a pediatric Cardiologist to further discuss the issues.

As I walked back to my truck I started to cry again. I couldn't comprehend what was going on. I then called Josh and my mom. I felt bad that I didn't have a lot of answers but I needed to feel comforted. 

The 95 minute drive home was painful. I thought of every situation possible: the baby being born healthy and strong - maybe they had made a mistake - all the way to where we would bury him if he didn't make it.

I got home and the crying continued. Once Josh got home we talked more about the situation and he showed me a video he had found, which helped explain the situation more.

http://www.childrenshospital.org/conditions-and-treatments/conditions/vein-of-galen

The next day I received a call from the hospital. They had set up a meeting with the pediatric Neurosurgeon (Dr. Lin) for us on July 3rd. After our meeting with Dr. Lin I would need to go have another sonogram and meet with Dr. Leonardi. 

The week in between the two hospital visits was pure hell. I cried almost the entire time. It was hard not to think about it. I would lay in bed, rubbing my belly, talking to my son, telling him how sorry I was and that I loved him so much.

I would wander around the house looking at all his baby stuff wondering if I should detach myself from him because he may not make it home.

A few days before our appointment, I back my hospital bag, the baby bag and my breast pump. I knew that there was a chance that the sonogram could reveal that his heart was failing and that they would have to take him early. If that happened, I needed to be ready.


On July 3rd, Josh and I drove down to Peoria for our appointments. We first met with the pediatric Neurosurgeon, Dr. Lin. He told us that two main things can happen: 

(1) The baby goes full term, is born without any heart failure, and comes back in a few months (after he gains weight) to do the procedure. At that time the procedure would consist of going into a vein in his groin and then following that all the way up to the brain where they would plug the Vein of Galen.

(2) The baby goes into heart failure, they have to take him early, and we would have to life fly him to Chicago where a specialist would perform the surgery. This surgery is more risky because the baby would be too small for the groin-to-brain surgery so they would have to go in through the back of his skull, directly into the brain, to plug the Vein of Galen.

So, pretty much we have to wait and see.

After Dr. Lin, we went to have my sonogram done. Josh has not been able to be at any of my ultrasounds since our gender reveal. This sonogram went pretty fast. The technician checked his brain and heart and then got some super cute 3D pictures.


[Sleeping with his hands by his face]

After the sonogram, Dr. Leonardi came in and told us some good news. He said that the vein is not anymore dilated then it was last time. He also went through my previous sonograms and it looks like the aneurysm is a new development. That means the brain was fully formed (or close) before the dilation happened. He also told us that baby's heart looks strong and he appears happy and healthy. He said for the situation we are in we are "lucky".

So what now? We wait and we pray. I have to go to the hospital once a week until he is born so that they can keep an eye on the little one. If all goes well I should be able to deliver naturally and at full term. He will still have to have brain surgery, which is terrifying, but if he goes full term then he will have a really great chance of getting the groin-to-heart procedure done and living a normal life.

Next week we have an appointment with the pediatric Cardiologist and they will do an echocardiogram on the baby (technology is pretty amazing!). While we are down there we will get a tour of the NICU and the Labor and Delivery area. I will also have another sonogram and a meeting with Dr. Leonardi. 

[I guess I should get use to getting these]

We do appreciate all the love and support we have gotten from friends and family. Please continue to send happy thoughts and prayers to our little one.

3 comments:

Darin and Haylee said...

Courtney! I am so sorry! What a scary time! I will keep you and your baby in my prayers! Sending lots of love to you!!

Courtney N said...

Thank you so much Haylee! Prayers are greatly appreciated <3

Leslie Elaine said...

Wow, I can't imagine! You're doing the best you can do! Its not your fault, but the unknown is scary. Praying for you guys!