Thank You

So much has gone on in the last 6 weeks or so and I have been terrible at posting.  Firstly, I am so humbled by all the help and generosity from friends, family and complete strangers.  February was CHD awareness month and we celebrated it true to form… in the hospital.  That time was much more difficult for us than our prior admissions and thankfully we got through it.  Thank you so much to my amazing friend, Lexi, who set up a donation account and wrote about our family’s story on her blog.  Thank you to everyone one that has reached out in one-way or another. It means more to us than you could ever know.

We were released from the hospital 2.5 weeks ago, and a few days before our discharge I did something stupid.  I know this sounds silly but there are a few things that I’m really superstitious about. One of those things is tempting fate without knocking on wood.  A day before Ali’s release, I dared brag about the fact that she has never been ‘sick’.  She has been through heart failure and lung disease so she has been chronically sick in that regard, but she never had a virus/infection type of illness in her 8 months of life.  Less than 24 hours after I spoke those words there was snot….lots of it.  We were released from the hospital nonetheless with some new equipment to manage her health at home. 

List of equipment:

·      Darth Vader sounding o2 machine and nasal cannula

·      Home snot suction kit (its badass)

·      NG Feeds (we had this before)

·      Pulse ox and heart rate monitor

·      An entire pharmacia

The snot has lasted this entire time.  She started to show signs of improvement and then seemed to come down with some type of secondary virus.  She has had good days and bad days, today was a little of both.  We knew over the weekend that she was having a difficult time.  We desperately wanted to avoid the ER over the weekend so Mark took her to the pediatrician early this morning (I was at work, I think its AWESOME that my husband is so in tune with Ali and is so good with her care).  Her pediatrician recommended that she go to the ER so that she could get better suctioned and tested for viruses.  So that’s what happened…luckily it was only about a 4-hour stay though, record time for Ali.

Our plan for the next few moths is this:

1.     Get her through this dumb cold

2.     Replace her disgusting non-fat formula with breast milk (once cardio gives us the okay)

3.     Replace her NG feeds with oral feeds (by sippy cup, bottle, spoon, syringe, ANYTHING that works)

4.     Slowly come down on the o2

5.     Slowly come off cocktail of medication she gets served several times a day

Things are going well, Ali loves being home.  She loves playing with her sister and sitting outside.  She loves to poke the dog and roll all around.  We keep her home mostly, except for doctors’ appointments and trips to the park.   When she’s feeling good she is nothing but smiles.  I hope she will wake up tomorrow feeling like a brand new baby.  I always hope for that.

~Melissa