Follow Up Appointments

We are continuously surprised by how well Magnolia is doing.  Because we had the WHS diagnosis during pregnancy we had time to read and research everything we could find on WHS.  We told people that we were preparing for the worst and hoping for the best for Magnolia.  The doctors told us the same.  When we left the hospital after only 18 days we were thrilled but shocked.  Of course we knew we had 7 follow up appointments and a long road ahead, but we were taking it day by day and grateful for how well she was doing.  Now we are starting to have her follow up appointments. 

We had our pediatric cardiology appointment last week.  I had just read a great post from another mom about how many doctors are not aware of the broken hearts of parents and oh how appropriate of a post it was.  The cardiologist that we saw was so straight forward and matter of fact that he literally took my breath away.  We went to see him because Magnolia still had an open PDA.  Nothing of great concern. Or so we thought.  As he was doing the echo I noticed his facial expressions and got concerned.  When I asked if the PDA was closed he said no and we have other issues going on as well.  My heart started racing.  He told me to go back to the exam room, get her dressed and wait while he looked up some numbers.  He came in to inform me that Magnolia's PDA is still open and she also has an ASD and pulmonary stenosis.  He then said, "You know all about WHS.  It's a horrible syndrome and has a lot of really bad stuff associated with it.  This is to be expected.  I'm sure that's why you are here.  We all have a limited number of days so you should cherish each one you have with her."

It doesn't matter how true all of the things he said are.  It doesn't matter if I did know there was a huge chance that Magnolia would have heart issues.  It doesn't matter if we all do have a limited number of days regardless of a syndrome or not.  Did he need to say it like he was telling me he was going golfing that afternoon?? I'm aware that as a pediatric cardiologist he sees some very scary and extremely life threatening things on a daily basis.  I'm also aware "in his world" this is not that surprising.  I'm also aware that he did ask if I knew she had WHS before birth and if I knew about the syndrome to which I responded yes.  I did NOT know that by my responding yes that somehow gave him the go ahead to flippantly inform me of my daughter's heart issues and tell me I could lose her any day.  Please do not get me wrong I'm fully aware that Magnolia could be doing so much worse, she could still be in the hospital or getting ready for surgery or something even more dire.  We are so grateful and thankful that she is doing so well.  I guess I was just spoiled by the NICU doctors, nurses and staff.  They treated OUR hearts with warm soft hands.  They didn't casually tell us of any of her health problems.  Every time they spoke to us it was with care and compassion.  Apparently those days are over. I really should have printed out the post about broken hearts and given it to the cardiologist, though I doubt it would have changed his demeanor.  It was a rude awakening to the world of which we are entering.  Again, I knew we would have to get thick skin, fight and be an advocate for our daughter, but I was hoping it wouldn't start so soon.  We have a kidney follow up appointment this week, hopefully this one goes better. 

I was hoping that I might soon get comfortable enough to quit checking every ten seconds to make sure Magnolia is still breathing but this appointment just ruined that.

I know I Do in Fact Wear a Lot of Grey

Many people have wondered about the title of our blog.  When we decided to start a blog coming up with a title was a lot harder than we thought it would be.  We didn't want to name it Magnolia or something that relates to just her because we knew we would post about Toller as well.  Both Brian and I love Lisa Loeb.  One day, many years ago, I was watching cartoons with Toller when Lisa Loeb come on with a video for her song called Jenny Jenkins.  Toller (then a toddler) immediately started dancing.  We watched that video and played that song continuously.  We still all love it.  Brian suggested, "I won't wear grey" as a blog title signifying that we had gotten a bleak diagnosis on our daughter to be, but we would not let that define her life.

I love this video.  Lisa has great glasses and the kids are adorable!  Enjoy!

Is it time for me to go back to work?

You know you are a child of the 80's when you make your children recreate a scene from E.T.

At least it wasn't Flashdance!

Goodbye ugly yellow tube!

You may have noticed something missing from the tutu pictures.  Last Thursday, November 4th, we went to see the surgeon to have Magnolia's ugly yellow long feeding tube removed and a Mic-Key button placed instead.  Magnolia did not enjoy the procedure which basically consisted of pulling out the yellow tube and shoving the Mic-Key button in.  The doctor then filled the balloon (which is under her skin) with water so the Mic-Key will stay in place.  Then the doctor drained the balloon pulled the Mic-Key out and asked which one of us wanted to practice putting it in.  I picked Brian! We are grateful for the doctor doing this as we know one day we will wake up and the Mic-Key will be out (it happened to a friend).  However, I don't think Magnolia enjoyed all of the pulling out and shoving in.  She was hysterical!!!  The area around the button was really red and sore for several days, but it's looking much better each day. 

We are so happy to see this go.  Getting Magnolia into the carseat with this huge tube was a challenge.  Plus we imagine the metal clamp was not comfortable as it constantly ended up pressed against her side or back.  

 

 

We are extremely happy to have the button! On top of many other things it increases her wardrobe options. She can finally wear something other than just front snap clothes!

Saying goodbye to the yellow tube also allowed us to give Magnolia a full (covered in water) bath for the first time.

bath photos by Toller

1 MONTH OLD TODAY!!

Wow! This month has gone by so incredibly fast.  Magnolia is currently weighing 4lbs 9oz.  That's a big jump from the 3lbs 7oz birth weight. We are pretty sure all that weight is just in her cheeks!

 

 As Toller said tonight, "Every girl needs a tutu!"

Halloween!

Our Pea in the Pod and Darth Vader

 Toller decided he wanted to be Darth Vader for Halloween.  He wanted Magnolia to be a character from Star Wars as well but we couldn't find anything small enough.  We didn't buy or make her a costume earlier because we honestly didn't think she would be out of the NICU in time.  The smallest costume left by the time we went to look was a Pea in the Pod.  It was still enormous on her, but we put her in it anyway.  She cried for awhile and Toller wanted us to take it off of her.  He hates it when she cries.  We had to inform him he hated his costume when he was a baby but we made him suffer with it for the sake of pictures.

I can't believe this 'little squirt' is now 7! 

Magnolia on her 1st Halloween!