Sorting

  Yesterday Amber and Alex spent the entire day at the hospital seeing specialists, getting blood drawn, and getting information.  Making sense of this information hasn't been easy.

  About 10 days ago (on a Wednesday) a routine ultrasound revealed Hydrocephalus.  While Amber was on her way to a second ultrasound, I got on a plane (see Bitter Sweet).

Read about Hydrocephalus

  By the time I arrived in Minneapolis, the second ultrasound (with a more specialized radiologist) revealed a bleed.  On Thursday, a Fetal MRI confirmed both: cerebral hemorrhage and hydrocephalus.  And then came the best part, trying to make sense of what little information we had.  On Saturday a doctor finally called and asked Amber to come over to the hospital for more testing: this included another ultrasound, some platelet testing and a brief chat by the on call OB who informed her she needed to transfer her care to a perinatalogist.  Call them first thing Monday morning.  It was Easter weekend after all. 

  Monday was spent calling doctors to make sure everyone knew what the plan was (no one did).  Information was repeated and repeated.  Last names and insurance information over and over again.  Then calling work, arranging for disability/maternity etc. more forms need to be signed and faxed.  Since this was urgent they would fit her in by Friday.  FRIDAY!  So, why don't you go home, hang out, and contemplate this: cerebral hemorrhage and hydrocephalus.  And we'll see you Friday.

Read About Brain Bleed

  Friday: I spent the entire day with Diego so that Mom could go with Amber and Alex.  We started our day with puzzles - shapes & Elmo.  He likes to put the pieces in the wrong place and then say "Noooo" and then put it in the right place and clap for himself.  We went outside and went through an old pot of decorative glass marbles.  We put them into piles - blue, purple, green and 'other'.  Those that didn't fit got tossed mercilessly out of sight.  The rest were arranged neatly in lines, then piles, the piles were moved from one step, then another.  He enjoys these games.  He enjoys labeling things and learning about his world.  He showed me the 2 plastic chairs in the backyard - "Dodo Chair" - the blue one and "Baby Chair" - the pink one.  Things one can touch (balls, toys, bike) and things one cannot touch (the grill - "HOT", Daddy's tools, Grandma's cigarette butts - "YUCKY".  Sitting on the couch last night he looked at Amber's belly, touched it and said "baby".  Then to Mom's belly and said "fat", then over to me "two fat".  :-)

  I wish I could tell you something definitive but I can't.  The perinatologist had a very very bleak outlook - baby unlikely to survive, extensive damage.  Geneticist running all kinds of tests - some will come back Monday ... some in 3 weeks.  3 weeks.  THREE BLESSED WEEKS!  Neonatologist - confirmed blood in 3 ventricles and hydrocephalus.  But this is 'atypical' and 'unusual' and they aren't sure how to proceed.  It's possible that because of the brain's malleability that there will be little damage.  They won't know until she's born.  The pediatric neurosurgeon (who Mom hopes will be her 4th husband), seemed as perplexed as the neonatologist - 'we've never seen this before', 'don't know what caused it', 'we'll have to wait and see'.  And these guys are the experts.  We need Diego for this one.  Which one is purple?  Green?  Which one do we throw away?

Dr. Mahmoud - the 'handsome' neurosurgeon

  They do have a plan.  All 4 doctors were meeting Friday afternoon.  They will induce on Tuesday unless they decide on a c-section.  I pray that May will bring FLOWERS.
 Is this RARE?

The Bitter

  Now, that I've told you about the Sweet, let me tell you about the Bitter.  I've got a wicked tension headache, I miss my kids, I'm stressed about getting my grades in, and I'm worried about my sister. 

  At age 8 my Mom decided she no longer wanted to be married and moved out (and away - like far away - like from Colorado to Maryland).  My stepfather raised Amber from that point as a single Dad.  He did a fantastic job, if you know what matters: love and being there.  He ADORED Amber.  He DOTED on Amber.  He took her everywhere (he once took her to Lake Baikal by BUS).  He coached softball, drove her to piano and violin, encouraged her in school - where she later earned a degree in Geography.  Maybe the whole 3 meals a day thing and put on your coat thing wasn't there - but he raised her.  For high school they moved back to rural Oklahoma where they lived on the same property as his elderly mother.  We all celebrated her high school graduation together in June of 1998. 

  In August she started college at OSU.  In September Dan had a massive stroke and died.  I drove to the funeral with Amber.  She didn't cry, at least not in front of me.  She didn't quit school either, not even for a semester.  She graduated in 4 years and moved to Minnesota where the cousin of a friend helped her find a job as a waitress.  She continued to take classes (in Biology, Chemistry, etc.) in order to prepare for her application to medical school.  She hopes one day to work as a Physician's Assistant. 

  She married Alejandro (Alex), an immigrant from Mexico and pursued a job as a Pharmacy Tech in a medical clinic where her fluent Spanish is a great asset.  When Amber was 7 months pregnant with Diego, Alex travelled to Mexico to complete the paperwork for U.S. Immigration.  While he was gone Amber went into pre-term labor and delivered Diego 8 weeks early.  Alex was unable to return, first because of paperwork, but later because of the Swine Flu.  He didn't have it ... but no one, not even someone whose wife had just given birth to a premature infant and was alone, could leave.  So Diego spent 30 days in the NICU and Amber took him home alone.  No 'Bringing Home Baby' to the annoying mother in law/neighborhood barbeque here.  Diego is FINE now, totally FINE - he's thriving. 

  But I think she really wanted to be able to give birth to a baby that she could nurse (Diego was fed through a feeding tube through his nose), and hold, etc. I wanted that for her.  And now this.  Her sweet baby girl is struggling.  And we don't know anything.  She finally sees the perinatologist and pediatric neurosurgeon tomorrow.  No one appears to be in any particular rush to help Amber or her baby, she's spending a riduculous amount of time making sure Doctor A filled out Form 227 so that Doctor B can order Test 23 ... but oops, Doctor C forgot to write something in the chart so we have to call his nurse first ...  Friday we should know the extent of the brain bleed and hydrocephalus.  We should know what the plan is.  We should know what the prognosis is (at least more than we know now).  So that's the Bitter.

Bitter Sweet

I've been in Minnesota a week now, since my Mom called and told me that Amber's baby had just been diagnosed with Hydrocephalus.  I got the call around 3 pm, got on a plane by 8 pm and arrived in Minneapolis before midnight.  By the time I got here a second ultrasound had revealed a second more serious issue ... the baby had suffered a brain hemorrhage.  I think I'm over the shock.  I've shed some tears.  The future is unknown but not likely to be simple or positive ... at least not in the way we typically consider it.

But I'm enjoying my time here.  My sister is one of the coolest people I know.  My love for her borders on insanity, I think because she was born when I was 13 ... or maybe because of the close bond I had with her father (my stepdad Dan).  I'm trying to keep her fed and comfortable, giving leg and back massages, positioning pillows, getting water, running errands.  We're laughing about the usual stuff - her poor English (Spanish is now her 1st language - she frequently says things like "Diego is sleeping all the night ... Call him and see how much it is costing ...), Mom's gas, my neuroses, and Diego.  Diego is the sweet part.  At 26 months every day is exciting, new and happy.  He and I've been doing some serious bonding.  We play (with his balls, cars, blocks, bike), we've been for several walks (we look at trees, birds, and even saw the Easter Bunny - ON EASTER).  I give him his bath, brush his teeth with his SpongeBob toothbrush, then get him ready for bed.  He communicates in perfect English or Spanish as it suits him.  At bedtime it's "Dark" which means please put on my nightlight, then "Book" which means you can't leave me until you've read one to me, then "Agua" which must be placed strategically on the table by his door, then "Nike" which means Good Night.  More and more, even in the short time I've been here, he's creating two word sentences: Blue Bike, More Agua, More Ball, and TWO.  He loves TWO.  He can hold up TWO fingers, he can count (but everything after one is two).  Instead of Ready, Set, Go, it's "two, TWO, TWO!!"  Up or down the stairs is "2, 2, 2, 2, 2, 2, 2, 2!)  Two words: Bitter Sweet