Whirlwinds Never End

Things are never dull around here.  I would have updated my blog on a daily basis when we landed back in the hospital last week, but I couldn't get safari to work on my macbook while there and quite frankly didn't have the patience to trouble shoot either.  So call me lazy, but here are my Facebook updates from my phone.

December 15th

Well the party is over... we are going back to CHLA tonight for admitting. With speaking to our HLHS clinic and cardio today about some more desats and low heart rates (not often just occurring occasionally) it has been decided to go ahead with the heart cath tomorrow as long as she is well. There is a question as to whether she could have a cold or if it is just stuffiness, which we both have, and this could be causing the desats. So, I am quite a mess right now and just not ready for this. We could you all the good thoughts that she is healthy and can get through this cath with out a hitch and we will are home lickety split. Typically they are monitored six to twelve hours post cath.

December 16th

Zoe after oral sedation :(

We just walked Zoe to her heart cath. It was so hard handing her over. Poor baby was given an oral sedation and she kept looking at me so sad. We don't anticipate going home until tomorrow as long as cath results are all good. We need positive thoughts as we are not any where near being prepared for the next stage surgery. We won't see her for about two to three hours. :( sad mama

Watching Finding Nemo morning after cath

And we are back in Zoe's room. Whew. What an eventful, tiring, emotional day but Zoe is looking better then ever. She did really well during her cath but to the cardiology team they found slight narrowing in her aorta which most likely was scar tissue. They ballooned the area and it looks perfect now. All her functions and pressures are perfect, better then ever and she is in top shape for the Glenn. They had some issues with getting her pulse strong in her leg (they go through the groin with the cath probe) but after some warming it is back in full force. Her hematocrit levels were a bit low and she did need a small blood transfusion which we are quietly finishing up right now. They will monitor her all night and as long as she behaves we expect to discharge tomorrow morning. She is sleeping after getting some good milk after a long day of no food. Happy tummy = happy sleeping baby = mommy finally able to breathe and relax and daddy picking up our favorite Italian up here. So next up is our surgical consult with the amazing Dr Starnes and The Glenn the first half of January. We have decided to face this full steam and get it over with. So the next few weeks will be spent preparing ourselves and lots and lots of cuddle time. Thank you for all the support. It is so needed in times like these. But... Zoe's little buddy who also has HLHS and had surgery at the same time needs a bit of cheering on. She had her routine cath today in prepping for surgery in January too. Her cath went great but her recovery was not good. She is now in the intensive care and needs lots of good thoughts.

Going home smiles with daddy

December 17th

It is so nice to be back home! We are relaxing in our own bed recovering from the hospital exhaustion. B and I are so thankful for all of the support through these challenging days.

********* end of FB posts thanks for bearing through that copy and paste *********

Now for some mommy bragging....

We did have a highlight moment at the hospital. Zoe rolled over for the first time ever!  After weeks and weeks of me hoping she'd do it, she chooses the hospital.  Go figure!

Want to swoon?  

While waiting for B to pull the car up to CHLA entrance I saw Patrick Dempsey walk in and sit in the lounge.  After much gawking and pleading to the husband - we walked over and introduced ourselves to him.  He was so genuine and took a real interest in Zoe's condition.  He even asked several times about how we were holding up through all of this.  What I loved most about this is that he was taking time out on a Saturday afternoon to visit with the sick children at CHLA.  And here is a picture of McDreamy and us (please excuse the horribleness of me - but what do you expect after sleeping three on a tiny couch for two nights with hardly a shower)

Spreading Some Holiday Cheer - I Need YOUR Help!

I am asking for a little bit of holiday cheer to be spread to newly diagnosed heart families...

Could you skip your fancy retail coffee drink for a day and give a small but huge donation of $5.00 to Sisters By Heart today? 

You will be making a huge impact in the lives of newly diagnosed families - I know because we received a wonderful care package from Sisters By Heart. Tis the season of giving friends and family! Help us make a difference! I would love to see how many of you I can rally up. Sisters By Heart cannot do this with out your support!


Donate to Sisters By Heart HERE!

We Had A Scare

Well, that was quite a rush of fear and emotions!  Monday night B and I were having a very relaxing evening by the fireplace watching tv while enjoying some delicious wine we received for Christmas.  Zoe was snuggled up in her co-sleeper crib next to the couch taking a nice nap for a couple of hours.  10 pm rolled around and it was time to give Zoe a bottle and head to bed.  I put her on our bed and just looked at her in shock, she was cyanotic - an even blue/grey skin tone with very dark blue/purple lips and gums.  Our bedroom has a very dark grey/plum decor and that never helps with her coloring so I quickly went into the bathroom with bright lights - yep she was a bad color.  Zoe was awake and smiling like nothing was wrong and by the time I brought her back into the bedroom her color was normal.  We put on her pulse ox and her saturations and heart rate were typical for her.  B makes a call into CHLA and the on call heart surgeon was not concerned because her vitals were back to normal.  However, I have no idea how long she was blue since she was sleeping in a dim lit room before I awoke her.  We were instructed to keep a close eye on her through out the night.  I left the pulse ox on and she was doing really well, but had a few heart rate dips into the 80s which just left me feeling a bit nervous.  These were changes and like I have said before, change is what you look for in our heart kids no matter how small it is.

Tuesday morning I made a call to our HLHS interstage clinic at CHLA to discuss what happened as I was still pretty uneasy with what had occurred.  Our nurse that follows Zoe agreed with me that it would be best to just bring her in for a through check up.  Unfortunately the clinic did not have any openings so we were unable to see our cardiologist so we had to go through the emergency room to be seen.  They go through the typical questions and vitals, which were all perfect.  Even though we kept telling the attending doctor (who is not a heart specialist) that she was a single ventricle he began to mutter that she has quite a murmur while listening to her heart - well duhhhhhh... she has half a heart!  Zoe then gets an EKG and X-ray which all look great, happy mom and dad.  Those EKGs can be pretty unnerving in the heart world.  The attending cardiologist finally came in and she said Zoe looked great.  They didn't want to do an echo since she just had one even though I kept asking for one.  Ho hum.  If this happens again, which it won't - no way, we need to go back up to CHLA immediately for admitting.  They will go ahead and do her heart cath right away.  Otherwise we stick with the plan and will return next Thursday for the scheduled heart cath.

Zoe was quite a show stopper through this whole emergency room ordeal.  She was laughing and playing without a care in the world.  The staff really enjoyed her personality and kept saying she is such a pretty baby.  Momma knows that :) ok, maybe I am biased but I think she is the prettiest little girl ever as well!

So now we sit tight and wait for next Thursday... and in the meantime we will be repainting our bedroom and Zoe's room.  Her pretty teal blue room does nothing for her skin tone either, so pink it is!

Sisters by Heart: One Born Every Minute

Sisters by Heart: One Born Every Minute: Set your DVRs - you won't want to miss " One born every minute" which will air this Tuesday at 10pm. This week's episode will follow Amber...

It Is December

Booo It is December 1st today and that means only 21 days until Zoe's heart cath.  I am not ready for all of this.  We should be excited about the holiday season, but this is looming over us and filling our hearts with dreaded fear.  Maybe it wasn't such a good idea to schedule it so close to Christmas.