Roller Coaster

I'm afraid that this blog is going to turn into my emotional let out.  Please feel free to skip any and all.

Of course an emotional Roller Coaster is to be expected when dealing with HLHS.  Jeremy and I went for the usual 20 week ultrasound on Friday 11/09 & all was going well we were laughing & enjoying the view of the baby, when she mentioned she was having a hard time getting the heart to cooperate she couldn't quite get the left side (blamed it on the babies positioning) so she went to get a "more experienced technician" who had the same difficulty.  They scheduled us an appointment with a Perinatologist the next Tuesday 11/13. Other than that they wouldn't say much just that they couldn't quite make out all 4 chambers.

The Perinatologist Dr. Silver had a few more answers.  The left lower chamber wasn't quite there, there was some blood flow on the left side.  He explained what the left side of the heart was responsible for verses the right side.  The baby was growing & would be fine in utero because of the Patent Ductus Arteriouses. He then said he would schedule an appt with Primary Children's (11/16) cardiology department & they would be able to answer more questions.  Again kind of just left there to wonder I was comforted because I knew the baby was fine then.  He did say that if there was nothing Primary Children's could do we would deliver at a normal hospital, but if there was anything that could be done that we would deliver at the University of Utah.  When we got in the car Jeremy was upset, I was still in shock I guess, but I said "why are you crying?  He said the baby is fine now, we'll find more out at Primary Children's" (see Jeremy has taken Anatomy and understands things a little bit better than me).  When we got to his parents house to pick up Chi & Lily I immediately asked for a blessing & among things said for me was that this little baby was "healthy and strong and that God had a plan for him".

Primary we did an echo cardiogram basically an ultrasound of just the heart.  Then we met in a small room with a team the cardiologist a fellow (student), the nursing supervisor, and a social worker.  More than I expected.  There we were told that our infant had Hypoplastic Left Heart Syndrome.  We could choose to do 3 surgeries, OR let nature take it's course and the baby will live at most 2 weeks.  The surgeries were temporary fixes, the blood wouldn't be as oxygenated as a normal baby even after the surgeries.  The right side would eventually wear out, then there's a chance we could get a heart transplant, but those only last an average of 10 years.  That's when it really hit!  There wasn't a cure!  I could let nature take it's course & KNOW that I'd have at most 2 weeks with my baby or go forward with the surgeries always wondering when.  The worse part was we choose.  We have to figure out what God's will is, does this baby just need a body & then return home or does it need more time on earth.  Maybe our cardiologist was a little to "these are the facts".

Jeremy & I took our anniversary leave & the roller coaster got really bumpy up down up down.  It would be so much easier to just let the little baby go, & continue life normally (call me selfish/heartless, but it's the truth!).  Instead of machines, oxygen, feeding tubes, pumping instead of breast feeding, chest left open for 3 days because they're so swollen with all the meds they're on.  Becoming Germaphobic (I AM NOT!!!) & paranoid.

Then talking to Jessica with a 1 year old that's through the first 2 surgeries & finding blogs that were promising 4 year old & now 23 year old. Verses online statistics that say the heart wears out about preteen.  Can you see the roller coaster?

Then it's insurance Dr Silver's office will work on the PA so I can deliver at the U of U that my ins doesn't cover.  Then it's call your midwife office.  Midwife office calls & yep U of U is in fact covered; however Dr Silver doesn't deliver so we'll need to find someone else to deliver the baby.  Then weeks go by.  I'm doing better everyday & the midwife calls & says something like come January you'll be coming in every 2 weeks. NO!!  I can't be that close?!?! Please I'm not ready, I've never been so terrified in my life!  I can't be that close!  She finishes the phone call with you might want to call your ins because they don't cover the U.  Oh no a gal in your office is taking care of it.  Figure it can't hurt to call United Health Care & ask myself.  Oh nope they don't cover the U.  The people the nurses/pharmacies call are all from India & don't speak ENGLISH!!!  (I worked at a pharmacy I know!) Little miscommunication & we are back down again.  So I call RMOBYN & she'll get working on it again. Oh and by the way Dr Silver can & will be delivering your baby.

Then it's the little kicks.  The first time I felt them it brought immediate heartache & despair.  Then I started to pray for a miracle & the kicks were like the baby saying see all is well.  Now it's a happy medium I know all isn't well, but I LOVE feeling the kicks, getting to know this little baby.

Tomorrow we go in for another echo cardiogram at Primary's & meet with a different Cardiologist, maybe it'll be a different ride.  Now to figure out what God wants us to do...

I am so grateful for all you love, prayers, & support!  I think another reason I started posting about HLHS is it's good therapy, but also we need all the prayers we can get!  Thanks for helping us carry our burdens!