Prenatal Testing- Take 2

Wow.  What a difference a day makes.  My head is spinning from everything that's happened in the past 24 hours.  Some of you may remember I wrote a post on our decision to decline prenatal screenings with this pregnancy.  We were firm with our decision and I was amazingly calm about the potential for another birth diagnosis.

Yesterday at my appointment with the midwife I was shocked to learn we would have to consult with an OB because Kennedy's history brought me into a risk category.  I discussed it at length with my wonderful midwife and felt comfortable with the fact that I would have to have a level II ultrasound to look for soft markers for Down syndrome or a heart defect.  Unfortunately this also meant that if there were concerns, I would potentially have to follow through with an amnio.  The more I thought about this, and talked to my husband about it, the more nervous I got.  Not about having another baby with Down syndrome.  But about having another baby with medical complications, which is clearly a higher risk when a child has Down syndrome.  Then there was the potential that the level II ultrasound would be fine, and we could still have a shocking birth diagnosis.  I absolutely do not want to risk out of care with the midwives, but at this point it seems inevitable that we could end up with a prenatal diagnosis, and now my anxiety level is at 300.  After much research, consideration and discussion, we have a new game plan.

I'm waiting for a call to schedule an appointment with the Maternal Fetal Medicine physician about 1.5 hours from us.  We'll be consulting with her, in order to obtain the MaterniT21 test.  This will tell us with about 99% accuracy if the baby has Down syndrome or not.  Best case scenario - we find out that the baby does not have Down syndrome, and we are able to continue care as planned, as long as there are no cardiac concerns that would prohibit it.  Worst case, if we find out that the baby does have Down syndrome, we will be risked out of the birth center.  Down syndrome doesn't scare me.  But the health issues that can come with it, do.  And so does the idea of risking out of my midwives care.  After they played such a huge role in Kennedy's birth, and the postpartum period, I cannot imagine them not being a part of this pregnancy.  I do have a game plan in my mind, if that's what it comes down to.  We had a wonderful experience at the hospital where Kennedy's heart surgery was performed, and in order to avoid the stress and tears that our NICU experience provided us, I would not hesitate to drive that far, if it meant having a better experience.  But in the end, hopefully it doesn't come down to that.

So for now, we wait.  Oddly enough, I was okay with waiting until birth to know whether or not this baby had Ds, but now that the wait is only weeks away, my anxiety level is through the roof over it.  Maybe as the birth got closer I would have felt this way anyway?  Who knows.  Hopefully, they will be able to schedule the appointment in a reasonable time frame, and 8 days after having the test completed, we'll know what to expect, one way or another.

Still Waiting...

So it seems that the reason we are STILL here, is in fact because of the fact she was given oral meds for 36 hours instead of IV, and because they basically skipped a day trying to get her off oxygen.  The new cardiologist on rotation came and admitted that there has been a definite lack of communication in Kennedy's care, and perhaps a few too many people with their hands in it.  That doesn't get us home any faster.  They were originally saying Friday, but fortunately I have a few people on my side aiming for Wednesday.  They started decreasing Kennedy's diuretics yesterday, and they should be switched over to oral today, with the intent to discharge tomorrow.  Please keep everything crossed for us.  I'm going crazy in this place. 

In an attempt to keep Kennedy more comfortable (and happier) they agreed to put a hep lock on her central line, so we could move around and play with her more.  We would just have to keep her on a portable monitor.  Of course, this sounded ideal.  But they never got us the portable monitor.  They also agreed to stop waking her up all night long!  Sunday night was ridiculous, and I let the team know that during rounds yesterday.  They woke her up four times.  For a diaper change, for vitals, for a chest x-ray and for IV meds.  All in a three hour period of time.  So they agreed that they would alter the schedule so she got her meds and assessment at 8pm, and then could be left alone until 4am when she needed her meds again.  They would also do the chest xray at that time.  Perfect, right?  I'm not sure what's happened, but we seemed to have changed nursing staff from week to week.  I was waiting forever to get milk for her, only to have to hunt down the unit secretary.  They were 1.5 hours late giving her Lasix last night, and if I didn't ask I don't think it would have gotten done.  I had to ask again this morning for it to be given.  I had to ask three times for her IV to be checked in her foot last night, and then when they determined it had to be removed, I had to remind them to actually take it out.  This morning when they woke her up for the x-ray, and  I unsnapped her clothes, I discovered her leads were all messed up.  I stuck them on wherever and went about my business.  I let the nurse know.  They never changed them.  Hope it doesn't matter where they are!

Aside from our hospital woes this week, Kennedy is doing amazing.  Her latest echo showed that her heart is functioning as it should be.  Her oxygen levels are great.  She's eating between 24-30 ounces a day and has shown some weight gain.  She's no longer getting oil mixed in her bottles.  She also has more energy than ever.  I cannot wait until we can get home and get back to life with her.  She is so full of smiles and energy I know we're going to have so much fun.

Yesterday morning, in an attempt to make her happy for a few minutes, I let her watch TV.  We had her propped up in the bed with her toys.  I had to pump, Marlon was at work, and she just needed to be occupied for a little.  She had her new toys in bed with her.  She had the bracelet over her arm, the ring with the "bling" in one hand and "purse" in the other hand.  Total diva in training.