I have a million pictures to share of Embry from weeks 7 and 8 of her life, including her first holiday- Thanksgiving! I am still wading through a million pictures and will hopefully get a post up by this weekend.
Today we just wanted to share the news of Embry's biggest appointment to date. Today was her in depth MRI at Children's Hospital where she was fully sedated and 400 images were taken of her brain and spine and we had our follow up appointment with the Pediatric Neurosurgeon group we saw when she was 10 days old.
We could not have asked for better news. Embry got a "clean bill of health". We are so overjoyed! Here's a brief (as possible) summary:
- The first time an issue with Embry's brain was brought to our attention was when the perinatologist told us she had hydrocephalus. They thought she had hydrocephalus because her ventricles were enlarged. Enlarged ventricles, in turn, means there's extra cerebrospinal fluid in them (thus "fluid on the brain").
- Today's MRI confirmed that the amount of fluid in Embry's ventricles is not increasing. If anything, the amount of fluid is decreasing. This means that she will most likely NOT require a shunt or any surgery as a result of the fluid.
- I asked the neurosurgeon whether Embry has "hydrocephalus." The neurosurgeon said no. "Hydrocephalus" is where there's extra fluid on the brain and a surgical procedure is required to correct the cause of the excess fluid. Rather, Embry has "ventriculomegaly," enlarged ventricles because of excess fluid.
- Cerebral Atrophy
- After our first MRI, the neurosurgeon told us that Embry has cerebral atrophy. This has been our biggest concern ever since. The term literally means "wasting away of the brain." It's not a great diagnosis. Nothing a parent wants to hear about her child's brain.
- Today's MRI, the neurosurgeon told us, strongly suggests that Embry does NOT have cerebral atrophy. YES!!!!!!!!!!!
- Intraventricular Hemorrhage
- After our first MRI, the neurosurgeon told us that the "hydrocephalus" and all related issues were probably caused by an intraventricular hemorrhage (IVH). An IVH is a hemorrhage that occurs inside the ventricles. He didn't know what caused the IVH.
- Today's MRI confirmed that Embry probably had an IVH. We still don't know what caused it, but it most likely isn't a genetic issue.
- An IVH, by itself, isn't a concern.
- Benign Macrocephalus
- This is Embry's new diagnosis. "Macrocephaly" means "unusually large head." "Benign" means "harmless." In other words, Embry just has a big head. This will allow for her brain to grow whenever it wants, to as big as it wants, without her skull getting in the way!
- In all seriousness, Jacob and I both have large heads. The neurosurgeon told us that head size is genetic. Also, Embry's length/height, weight, and head circumference have all been measuring in the high 90 percentiles since she was born. So her head is proportionate to her body.
Overall, the doctor told us that if we wanted to we could have one more MRI (like in October, a quick 5 minute scan with no sedation) in six months to follow up, but he even said that may be "overkill". He told us to go home, put away all of our charts, books, etc. and enjoy our normal baby girl!
I cannot put into words what it was like to hear all of this today that our baby is completely normal and healthy. Since September 24, the day we found out about the fluid on her brain and I was hospitalized for my blood clot, we have been on a roller coaster of emotions. I remember being told your newborn will be rushed to NICU after birth and probably be transferred to another hospital to have surgery then she came out perfect and we felt relieved for a few days! Then ten days later being told that our baby's brain is smaller than normal, she had a hemorrhage and to possibly expect her to have special needs. Then meeting with a neurologist who told us she seemed fine to him. Everything has come down to this big MRI today and it was so incredible to hear the news we'd wanted SO badly. I know Jacob and I both have had a time dealing with this and will never take our health or baby girl for granted!
Phew- dry my eyes and move on!
Anyway, besides our fabulous appointment the actual sedation and MRI went well too. Embry couldn't have anything by mouth after 4:30 am, which I was really worried about. She went down around 9:00 pm last night and got up at 3:00 am to nurse. We all got up around 6:15 am today and she was definitely hungry, but never once cried! She didn't go under until 9:00 am. I know, perfect baby right? She definitely was starving- chowing on her paci and anything else (her carseat buckle, clothes, etc), but she was all smiles at the hospital and never fussed.
After the MRI we got to go right back into recovery and be with her as she woke up. It took her awhile, but she started to stir. We were told she did great with the anesthesia and didn't need to ever be intubated. (We were told beforehand that a lot of babies need to be intubated because their brains aren't fully developed and they forget to breathe). We were released and by the time our appointment was over she was fully alert and ready to eat!
Here are a few pictures and one video from today. Now we're off to celebrate with a yummy steak dinner and spend the rest of the day just the three of us. So much to be thankful for today!
|Being weighed! 12 pounds 12.5 ounces!|
|Happy girl kicking around!|
|Cuddles with Daddy!|
|How cute are the hospital gowns?|
|Right before I lost it!|
|Home from an eventful day and reading books!|