Ventricular What?

The drive to the university hospital was one of the longest drives I've ever had. That and my husband forgot to take the right exit (love you hunny). I was released from the hospital early and swollen from head to toe. I was absolutely miserable, but I could not and would not be without my baby. Luckily, in all of the hospital's glory they had a diagnosis for us by time we arrived at the NICU to see our sweet baby boy.

Parker had a Grade IV brain bleed/ventricular hemorrhage. At some point in his short little life he had suffered some trauma to his head and consequently had a brain bleed. The bleed actually ran out of his ventricle and onto tissue thus giving him episodes, or seizures we later learned.

As any mother out there would think I immediately thought this was my fault. The Neonatologist could read my mind, I swear, and the first words out of his mouth were, 'This is not your fault. You, mom, did NOTHING to cause this." Try telling me that at night when my anxiety keeps me from sleeping. It does not matter how many times I hear it, I will always place the blame on myself for the brain injury. Believe me, I wasn't doing anything physical during my pregnancy. Unless you consider couch lounging and sunbathing physical...

But in all seriousness I did everything right. I walked, swam, ate healthy, took my vitamins, got prenatal care and not to mention signed up for every scan under the sun. Not one thing indicated Parker had anything going on in his head. So, it must have happened during delivery, or, it was simply missed. The Neonatologist was 100% accurate when he told us we'd more than likely never know what caused this. My husband and I simply have no closure. He was tested for every blood disorder and was negative for each one.

Parker had at least two more seizures after he was admitted to the NICU. Very early on he has been good at performing in front of the right people. The Pediatrician at the hospital after birth and then in front of a Neurologist in the NICU. The Neurologist said, "Yep, that was a clinical seizure."

They gave Parker a HUGE dose of Phenobarbital and the poor baby was out for hours. One day he was so out of it he forgot to pee. Real life.

I am not sure how many of you have ever had babies or family members in NICU's but it is quite a journey on it's own. I commend any family that has been on this journey. It's hard and luckily we were only there for one week, though they kept us guessing daily on when we would be free, which only adds to stress.  In Parker's case he was admitted in the most serious or critical bay's for babies. His neighbors were weighing in at ounces, where Parker was well over 8 pounds. Once he got stronger and starting testing those strong lungs of his we were quickly transferred to a less serious bay.

Looking at the bright side of the situation we were taught how to care for our newborn by some of the best nurses in this country. I learned all kinds of tricks from those Baby Whisperers.

The medication was working and he had his last seizure on Monday, December 23rd.

In one meeting with Parker's Neurologist he briefly mentioned two things: Hydrocephalus and Cerebral Palsey. I mean BRIEF. Never did I leave that conversation feeling like he would get one, or both of those things after we were released from the hospital. We were told that his body would reabsorb the blood naturally. The seizures were just a symptom of blood on the brain.

After about ten hours of tutorials, a circumcision and release instructions we were sent on our way. We were finally taking our baby boy home just in time to celebrate 2014.

Exactly 24 hours after we brought Parker home he started to projectile vomit. Great. They give us this child and a day later we already screwed it up! Naturally his pediatrician is out of the office so we have to see someone else who told us to just "love him, cuddle him and talk to him." The on call pediatrician didn't see anything worrisome about him at that point and it was okay for us to take him home. At the end of the day if he was still vomiting we would be admitted back into the hospital. Luckily what-ever it was passed and he was back to his newborn baby self before we left the clinic.

I had so much anxiety and probably a pretty serious case of post pardum depression that I couldn't even touch my baby. I was terrified I'd hurt him. When he was in the NICU I was actually holding him when he started seizing. Motherhood was not at all what I expected or had witnessed with any of my friends. My anxiety kicked in high gear after the projectile vomiting episode. If it wasn't for my husband I never would have gotten through those first few weeks. While I sat a distance away from him, my husband fed him and took care of him. I was already feeling like a failure of a mother when he got the brain bleed. At this point, I was overwhelmed at the fact that this mother thing was not coming naturally to me like everyone promised.

My husband went back to work so I quickly had to get over any and all anxiety I had about being a mother to a baby that may or may not have projectile vomits or seizures. Parker and I were forced to bond and I didn't look back. I finally had a chance at normalcy with my son. I was going to enjoy my maternity leave.

A little over a month later we took Parker to his check up at the university hospital. We met with the Neonatologist and Neurologist. The Neurologist was pleased with Parker and the fact that he hadn't had any seizures. We decided to meet back up in May to discuss taking him off of the Pheno. The Neonatologist said that he wasn't quite where he needed to be developmentally. It was as if he couldn't move his eyes. He has always been such a strong little guy, but when it came to his head and eyes he just couldn't do any of it.

The thing I can and will always appreciate about that hospital is their ability to be brutally honest, but with a heart. Let's face it. They deliver bad news to parents every single day. The bad news that was delivered to us was a little thing we like to call, "brain damage." You see, the blood that spilled out of the ventricle settled on actual brain tissue - thus creating the potential for brain damage. What kind of damage? No one knows. When I asked what I could do to help my baby they told me, "Just love him." Easy enough. In a nut shell, each milestone Parker was able to meet, the better off he'd be.

One month later...he still could not track objects with his eyes. I was devastated and had a very, very bad feeling.