March Madness

So today we had numerous doctor appointments.  The first one was in Radiology to get an ultrasound done on Zoe's spine.  On Monday, at our pediatrician visit, she noticed some abnormalities that sparked her to think it could be occult spinal dysraphism.  During the ultrasound the ultrasound tech was extremely nice.  She told us upfront that she would not (and could not) give us the results.  We knew that already.  I was asking a gazillion questions about the spine.  When she left the room, Mike and I really thought that Zoe could possibly have this, just how she was explaining everything.  I told myself I wouldn't get worked up until we got the negative answer.  The radiologist was going to have the results for our visit with the pediatric surgeon later this afternoon. NORMAL SPINE!

Next up was going to the lab to get blood work done.  They needed to see how her billy rubin numbers were.  We then met with Dr. Madonna (she's the surgeon who did Zoe's bowl obstruction). Zoe is healing wonderfully and eating like a champ.  We told her our concerns with what we've been seeing with Zoe while she feeds.  This worried her and said she was going to talk to Cardiology.  While we waited for the cardiologist, the nutritionist came to speak with us about Zoe's intake.  Zoe is eating what they want, however she's eating on the low end of what they want (they factor her intake and her weight). She's currently 8 lbs 7 oz (she gained 3 oz since Monday..yay!).  As of now they don't want to fortify her formula and we'll continue to watch her intake.

So on Monday morning (early), Zoe was panting ridiculously fast.  Mike doesn't normally worry about anything since he has medical knowledge and experience.  But she was panting so fast (around 60-70 bpm).  It was loud enough for me to get out of bed.  She had another episode last night.  Then this morning before we left for the doctor, my mother in law was holding her and Zoe was sweating from head to toe (only on her backside).  These symptoms are signs of heart failure, all of which we have to look out for due to her moderate VSD.  So the cardiologists reviewed her echo from last week, examined her and do not believe she's in heart failure.  They watched her eat, breathe, etc.  They said that its more gradual and not one time episodes.  So instead of seeing them in a month, we're going to see them in 2 weeks, then 2 weeks after.  From what we have learned from them today, that between 6-8 weeks is when heart failure symptoms start showing up in babies with VSD holes.  If she does start to show these more and doesn't eat that well we're looking at heart surgery between 4-6 months.  Its very probable that she'll need heart surgery, we just don't know when.

We did ask about her polysplenia and our concerns.  It seems as if they aren't too concerned about if her spleens are functionable since she's on amoxicillin.  The resident cardiologist says each doctor/team has a different approach towards polysplenic patients.  He said there are tests that can be done, but it wouldn't be until she's two years old.  He did say we don't have to have her in a bubble after three-four months.  We have to live our lives and she'll have to be around kids with germs, etc.  Just right now its crucial that she stays away from other toddlers, big events with lots of people, public places, etc due to her age, that she's recovering from invasive surgery, just got out of the NICU, hasn't had her shots and she's polysplenic.

So all in all, Zoe is doing wonderfully!  And I can't complain, because I have my family of four at home and we're taking advantage of global warming:)  This weather has been amazing for March in the city!  We've been walking all around downtown, taking the kids to the park and just enjoying the sunshine.

Zander has taking a liking to his sister.  He loves to lay next to her on the play mats and rugs.  He wants to give her kisses throughout the day.  He'll throw his angry face and jealously cries out, but he quickly stops when he gets attention again.  Tonight I told him that Zoe is going to be your best friend, he looks at me, points at Mike and says "its daddy".  I just laughed.  All week i've been asking him if his best friend is Daddy.  Looks like he doesn't want Zoe in the picture that much just yet!

We have many doctor appointments in the next few weeks and months.  Only hoping Zoe continues to excel and fight.  She's had so many diagnoses and possible diagnoses and most of them have been wrong thus far.  We will continue to pray and stay positive.

Here are some recent pictures:)