Brain Bleed

They say with micro preemies the first 72 hours is the "honeymoon" stage and after this is when the real fight begins.  Well the first five days were not easy for us but Morgan made it through and seems to be doing very well.  I also said once that the NICU stay was very difficult because when I walked into Morgan's room every morning I never knew what to expect or what kind of day we would have.  Nothing could have prepared us for this day and the news we received.  They do a head ultrasound within a week of premature birth and afterward the doctor came in with some terrible news- he was shocked to learn that Morgan had Grade III/IV intraventricular hemorrhage (IVH/brain bleed).  The bleeding was both intraventricular & periventricular.  He showed us the images and all we can see is black which shows the building up of water in the brain (Cerebral spinal fluid/CSF).  He explained that with the bleed in the brain matter the damage that is done is done, they will monitor this area of the brain but as it heals it leaves a scar and impacts motor and cognitive abilities.  The extent of the damage at this point is unknown but we were told to be prepared that Morgan will likely have severe motor disabilities, very probable she will have cerebral palsy and she may never walk or talk.

A large lump starts to form in my throat, my heart sinks and I am fighting back tears as I continue to take this all in and try to focus on what the doctor is saying...

He explained that the other major issue with the brain bleed is that is causes blood clots in the CSF.  CSF is constantly created by the body to protect the brain and spinal cord and constantly re-absorbed.  Apparently our bodies make and reabsorb approximately a pint of CSF per day. Due to the scarring and blood clots, Morgan's head and body is not draining and reabsorbing the CSF (hence the fluid build up we see in the ventricles). This condition is called Hydrocephalus.  We are told that sometimes hydrocephalus resolves on its own once the clotting is gone but often it requires a surgically placed shunt/drain which is permanent to drain the fluid to the stomach cavity.  At this point we will monitor the fluid in her head weekly via ultrasounds and if it continues to build up then a temporary drain will be placed (she is too little for VP Shunt at this point).  We will hope and pray it resolves on its own. 

Of course after the doctor leaves the room I am left alone with Google. I try to find stories of good outcomes from Grade II/IV IVH and hydrocephalus and try to learn about it as much as I can.  Unfortunately I find more discouraging stories than good.  Horror stories about shunt malfunctions (apparently it happens often) and high infection rates.  Stories of children with major disabilities and CP.  There aren't many positive but I find a few and try to remain optimistic.  My neighbor also gave me a book called "Preemies: The Essential Guide for Parents of Premature Babies" which contains many of the health conditions preemies face and provides good insight and information (I recommend to any preemie parent).  I find relief in factual information & educating myself with her condition and read as much of this as possible on hydrocephalus, brain bleeds, CP, etc.

Birth Day (24.5 weeks gestation)

It started out a normal work day and ended as the scariest day of my life.  Most of the day I can recall every detail but then there are some blurry moments as well.  7 am my work call gets cancelled, a few minutes later I feel cramps (contractions), they get more painful and at 7:45 am my husband and I are in the car on the way to the hospital.  We arrive in Burnsville, MN where I am supposed to deliver, I am hooked up to monitors and within an hour my water breaks.  I thought we just lost our baby girl. 

Next thing I know I am alone in an ambulance on my way to Abbott Northwestern in Mpls because I am told that Children's Hospital NICU next door can care for premature babies of my gestation.  I get settled and hooked up into my Hospital room at Abbott and my husband and parents arrive behind me.  I couldn't move from my right side because each time I do the babies heart rate drops, I received medication (Magnesium) to try to stop labor and a steroid shot for the babies lungs.  I saw the perinatologist and he told me that we need to keep this baby in as long as possible (days and hopefully weeks) and I can remain on bed rest there.  All of a sudden within an hour I am dilated to 4 cm and the nurses are throwing scrubs at my husband and rushing me down for emergency C section. 

My daughter, Morgan Grace, was born at 3:19 pm weighing 1 lb 7 oz and 13 inches long.  I didn't get to see her until later that evening but my husband held her little hand and went with her to her NICU room at Children's Hospital next door.  She was tiny, intubated, hooked up to many monitors, IV's going into stomach, severely bruised and bandaged.  She was beautiful to me.