Hydro...what??

In the United States the month of September is Hydrocephalus Awareness Month.  "Hydro...what?" you ask?  Hydro-seff-ah-luss.  I've recently read in other parts of the world it is pronounced, "Hydro-keff-ah-luss."  However you pronounce it, it's still the same thing...a lifealtering, potentially deadly condition of the brain.  Hydrocephalus comes from the Greek for "water on the brain." 

This time, two years ago I wasn't yet into my second pregnancy.  This time, two years ago I didn't know in 8 short months I'd be having twin babies born 3 months early.  This time, two years ago I didn't know the word, "hydrocephalus."

Fast forward to May 3, 2010, our second full day in a Level III Neonatal Intensive Care Unit.  I can recall this day, as though it happened only a few hours ago.  I can recall my steps to the wash basin to clean up my hands.  I can recall the hush in the unit as we entered our babies' bed area and the quick glance that came from our neonatologist, who was standing by Baby B's bed.  I can recall my husband mumbling under his breath that this doesn't seem good.  I remember trying to be optimistic, saying, "Maybe he just wants to update us on things?"  More of a question than a statement.

The doctor briskly came toward us.  He handled it well.  He did not approach us in a rushed, worried manner.  Instead he greeted us by first names and asked us to come into a private room.  He was calm and collected.  Of course, as soon as he invited us in to the private room, we knew we weren't being updated on the morning's routine details.  He had a social worker in tow and the nurse on with the babies.  Not a very good sign.

The doctor said that one of our babies had just experienced an intraventricular hemmorhage and pulmonary hemmorhage simultaneously.  Hearing this was terrifying.  The doctor advised us he had actually been at his bedside when the baby started to take a turn for the worse.  The baby's appearance had quickly become very ashen (grey) and he appeared to become rigid.  That's the way he described it.  He didn't go into detail as to whether or not he had physically done something to try to help the baby through it, but realistically I'm not sure that anything can be done in such a situation, except to hope the baby pulls out of it.

As we were only two days into our long stay at the hospital, we were still taking the trip back home nightly, so we felt terrible knowing we were not there when one of our babies was going through one of the biggest challenges of his life at only 2 days old.

I think the shock of being told the details kept me and my husband calm.  I rationally asked questions.  Why does something like this happen?  What does an ultrasound or xray show now?  What's the prognosis?

We talked for probably a good forty-five minutes in the private room, just to the side of our twins' bedsides.  The social worker took notes.  The nurse ensured we understood the doctor's medical lingo and broke things down in layman's terms as needed.  The doctor drew diagrams of the brain and the spinal column.  He drew a normal brain and the ventricles and an example of how our son's was appearing.  His was pretty much filled with blood from the hemmorhage.  Now we had to wait and see if the body could naturally clear the ventricle.  If the blood could not clear, surgery may be required.  A VP (Veintriculoperitoneal) Shunt may need to be inserted by a surgical process.

I remember during this time, the sound of the monitor bell alarms going off was extremely distressing to me in my mind.  I didn't want to be sitting in this closed off box of a room.  I wanted to be at my twins' bedside and see how the one baby was looking.  By this point he was less than the 2 lbs 4 oz he was when he was born.  A tiny little skinny thing, with nothing but potential.

Right from the day we arrived in the NICU we had asked the doctor not to scare us with all the maybes, what ifs and possibilities of anything long term for our premature boys.  Given this new chain of events, I really wasn't interested in knowing what the future may hold in connection with this new condition we were dealing with.  I wanted to deal with the here and now and not the various possible outcomes.  We repeated over and over again during our stay, "One day at a time,"  "One step at a time,"  "One step forward, two steps back."  The third one is really depressing to think about, but various versions of that were said very, very often.

The next three months would be a rollercoaster ride of fear, tears, pride, smiles and at last, relief.  Our little man had 2 surgeries before he was 2 months old...before he was even due.  He was a fighter and continued to surprise everyone with his ability to recover.

Initially he had a ventricular reservoir inserted into his right front ventricle, which acted as a small place to hold excess cerebral spinal fluid (CSF) and help (a bit) to alleviate some of the intracranial pressure.  The fact that the ventricle was blocked was causing the CSF to back up in the brain, causing head swelling.  He somewhat resembled The Great Gazoo (you know, from the Flinstones?)  His head circumference was enlarged because of the swelling and although it looked terrible, he seemed to be comfortable usually. 

The intention of the reservoir was to help extract excess fluid by "tapping" the reservoir every now and then.  The hope was that the reservoir would buy time for the body to heal itself.  Every time the baby's head/reservoir was tapped, it ran the risk of exposing him to infection.  Eventually it got to the point that doing reservoir punctures and lumbar punctures to extract fluid were not productive enough to make doctor's feel a VP Shunt was not needed.  So just before his actual due date he had his second surgery and a VP Shunt was inserted.

After surgery he was awake as they wheeled him out in his tiny little plastic transport box on a stretcher.  The doctors had said not to expect him to be awake for potentially several hours after the surgery, but there he was looking up at us as they wheeled him out.  There was a huge sense of relief.

Unfortunately, about 3 days after his surgery he was so tired out from his surgery and having been put back on full feeds pretty much immediately after surgery (the same day.)  It seems we pooped him out and he couldn't handle full feeds and all the energy he needed to keep them up.  He was nursing with me and not on a bottle.  Eventually, we had to take a nurse's recommendation and get him onto bottle feeds to help him pace himself and possibly be more comfortable at feeding times.  He had begun to cough, choke, sputter and forget to breathe when he was nursing and/or bottling.  It was so frustrating to have a baby who was nursing 100%, amazingly well the day before surgery, only to have a baby who now had to re-learn it all.

Eventually it got to be that he was losing weight and having such a hard time taking a bottle that he was burning more calories than taking in.  At that point in went the NG (naso-gastric) tube into his nose and down to his tummy.  Now he was back on "gavage" feeds, running his milk through a syringe and tube into his stomach every three hours.  This was disheartning.  Depressing.  Frustrating. Yet, he began to gain weight again, so at least it was serving a purpose.

Slowly, but surely over another 3 and a half weeks, we worked at getting him to take a bottle and/or nurse effectively.  It was a trying time, but I was confident in my skills as a mother and my son's strength, and knew that with the right amount of patience and the right environment we would be fine.

Wow, this is turning into a very long post.  I have so much more to say...so I will have to do another blog very soon.

I will continue my story and discuss the discharge, as well as talk about meeting another individual with hydrocephalus who has beaten many odds...