Two Steps Forward, One Step Back #WW

Today my Lil’ JaMonkey is a month old! She is doing better but not well enough to come home yet. She started nursing very well and even decided to pull out her NG tube (feeding tube). Her SVT is still not under control so they have adjusted her dosage of heart medications and we have recently discovered that some of the side effects are started to cause her breathing to slow to a stop when she is sleeping. We can’t hold her very long when she is sleeping because she destats too low.

We were hoping to be bringing her tomorrow but they ended up pushing it out so that she can eat a little better. Even though she no longer has her feeding tube in and nursing and taking a bottle she is still getting ahead of herself and forgetting to breathe while she is swallowing so she has to drink from a slow flow nipple. They won’t let her go home on a slow flow so it pushed it out a little longer.

They wanted to keep her until she could go 5 days without having any SVT attacks that required intervention but the cardiologist said that it wasn’t necessary because they could manage it from home. She will be coming home on a monitor so that I will know if she has an SVT attack because right now she doesn’t show any signs while having an attack.

She is gaining weight and is now 5 lbs 8 oz! So fingers crossed that she will get to come home this coming weekend! 

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  1. Praying this is the weekend! So close now. And, she’s getting so big.

  2. oh mama I am so sorry, prayers that she will be home soon!
    Nicole (Mama to 4 Blessings) recently posted..Clean Water With ZeroWater Pitcher (Review + Giveaway 2 winnersMy Profile

  3. Oh yay, yay, YAY!!! THat is so amazing!! Prayers for her to come home soon.
    Upstatemamma recently posted..April SquaredMy Profile

  4. Keisha Brown says:

    Oh she’s so adorable. Hope she’ll come home safely. Can’t wait for your update. Take care! :)
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  5. Oh how precious! Praying she gets to come home soon!

  6. Lindsay says:

    Sweet girl. I’m glad she’s getting closer to coming home. I know it must be impossibly hard for you, but she’s getting the care she needs so that she will be safe and sound for you to take home. What a beautiful little face!
    Lindsay recently posted..Wordless Wednesday: WeaknessMy Profile

  7. I know you want her home but if something crazy happened it’s best that the docs have instant access. Not what you want to hear, I’m sure, but you want her as strong as possible. Hang in there a little longer.
    Des recently posted..Brother and Sister Bond–#WordlessWednesdayMy Profile

  8. Wow, she’s a month old already? I am so glad to see that she is doing so well considering all that she has been through. And really – she is soooo stinkin’ adorable! Hang in there, mama. The best days are in sight!
    Autumn recently posted..A Jousting Good Time At Medieval Times AtlantaMy Profile

  9. Susie My SoCal Life says:

    what a beautiful baby. I am praying she’s home with you all soon xoxox
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  10. Hopefully she’ll be home soon, that was around the weight Ariel was when she did. And oh my did everyone come out the wood works when she hit 5lbs apparently they thought it was a magically they can go home weight.
    Amanda Jillian recently posted..March Photo Challenge: Day 24My Profile

  11. Maria Smith says:

    She looks so sweet! Praying that she will be well enough to go home very, very soon!
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  12. don’t worry she will be home soon… precious angel!
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  13. I’m glad to read that she is gaining weight! Fingers crossed that you get to bring her home soon!!
    BusyWorkingMama recently posted..Gardening Update Week 5 #WWMy Profile Protection Status