Going home??? – May 25 update

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Our first night upstairs in the Children’s Heart Unit was sleepless, thanks to Addison.  Aaron and I both stayed overnight on these very uncomfortable hospital cots (they kind of sag in the middle and since they are covered in easy-to-clean plastic, they crunch every time you move).  Little missy decided she didn’t really want to sleep and was quite fussy.  At about 5am, our overnight nurse Melissa figured out a potential reason for Addison’s unhappiness – she had started feeding her through gravity rather than a controlled pump, so the formula was going down the tube much faster and perhaps causing discomfort in her tummy.  Of course, she slept like a champion starting from 6am on.  We’ll see how tonight goes!

We haven’t wanted to ask about possible dates for going home…as my friend Chardon wrote in an email, it’s like saying ‘shutout’ when the game isn’t quite over yet.  But this morning at rounds, Dr. Gandhi said we should target MONDAY as the discharge day!  Yes, that is THIS Monday, which would be 4 weeks after we first arrived here, 3 weeks after her heart transplant, and Addison would be one day shy of 7 weeks old.

Here is what needs to happen before we go:

– Aaron and I need to learn the ins and outs of administering all of Addison’s medications (and there are several of them)

– We need to be able to feed her via the tube, including reinserting the tube in case her wandering fingers pull it out

This weekend, the plan is to go on a trial run, where Aaron and I are responsible for all her care with a nurse only on standby.

Meanwhile, Addison is continuing to impress all the staff here with her myriad of facial expressions.  She certainly isn’t shy about letting everyone know what she is thinking!

Oh forgot to mention in yesterday’s post – Happy 6 week birthday little girl!

Love,

Elaine, Aaron and Addison

6 thoughts on “Going home??? – May 25 update

  1. Way to go Addison! Praying super hard for your continued progress! Your 2nd cousin, Cayden, asks about you all the time and when we tell him your progress, he claps his hands and smiles 😀 He feels a kindred spirit in you, baby girl!
    Aaron and Elaine, we will pray that Addison’s stay is as short as possible but will not jinx it by placing a day in our heads. . . (if you know what I mean).
    Love and light!
    Lisa and James

  2. Wow – amazing. Thanks for sharing the pics, they really help us who can’t be there to visualize your environment and of course see precious Addison! I’m sure this journey has been unbelievable for you and I just want to you to know that I appreciate you sharing it and although this has been extremely stressful you have touched others with your strength. I know Addison is the strong one here but you both are an inspiration and I know she will recognize this one day.
    Take good care of yourselves.
    Rita

  3. Elaine, that is incredible. I’m so happy that Addison is improving so rapidly. She is adorable! She sure looks like Aaron. Where did your genes go?

    I will continue sending your family positive wishes. I am so impressed with your strength. You truly are an inspiration — as is your beautiful baby daughter!

    Best wishes,
    Brenda Jones

  4. WOW. Monday….???????? That is unbelievable…….. really!!!! The pictures are awesome. It’s amazing how much this little princess has grown over the past few weeks! Today’s instalment of the slideshow of photos is so cute! Definitely love all the facial expressions!!!! Love you all so much!
    Sonya

  5. Elaine, Aaron and Addison….

    I’m just now hearing about this terrifying and emotional journey you’ve been on.
    I’m heartened to hear Addison is little fighter extraordinaire (not to mention gorgeous!).
    I’m praying you all get to go home on Monday as *promised* and you get to cuddle her like crazy and do regular parent/baby things.

    Take good care. Thinking of you.
    Much love,
    Cara Wiest

  6. I think I am the most blessed great Auntie there is in the whole world. I got a chance to hold the most precious miracle baby princess! Addie is absolutely gorgeous, even with a tube! Grandma Yong said there was even a SMILE when I held Addie! 🙂 🙂 🙂 Addie, you will be mightly used by God! Great Auntie Margaret

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