Oh good grief…

We are home, hurrah!  But talk about an emotional roller-coaster.   Since Friday, when our Nurse practioner told us to be prepared to have Ava be admitted back into Sick Kids, I was feeling down and sad about having to put Ava back in hospital,   but then by Sunday I became resigned and Jason and I were actually looking forward to getting some sleep. 🙂   And since it’s March break, we thought the best thing would be to take the kids with us so we could be together at the Ronald MacDonald House, so we packed everything up Monday, ready for a long stay in Toronto.

But then,  after the nurse and the dr looked Ava over yesterday, they pronounced her fit as a fiddle and said we could go home!!!   Our reaction was a mix of excitement knowing Ava was OK and being able to go home, but then also  frustration that we had gone through all the packing up for nothing.  And the biggest kicker is that I was so tired before, but then I got to add-on packing and un-packing to all of that… good grief.

However, we are so incredibly thankful that after Toronto reviewed all the echocardiogram that Ava has had since just before we were discharged,  2 from Toronto and 2 from London, they didn’t think they saw much decrease in heart function over the past month, which is such an answer to prayer.   And there is a lesson to be learned here… never again will I go down to clinic with more than an over-night bag!!!   And if we are admitted at a later time, well we can always drive back and get what we need.

And after talking with the dietician yesterday I think we have a plan for me to get more sleep.   Right now, Ava only gets breast milk through her ng tube every 3 hours, which although she is slowly gaining on, but she’s only in the 3rd percentile, poor little turkey.    So she figured out that if we add 1 tsp of formula to my milk every feed, Ava will get enough calories that I could skip the 3 am feed, hallelujah!  So the plan is to increase her relfux meds for a few days,  increase the amount I’m feeding her and so in about a week I should be ready to add the formula.  So maybe sleep will be coming my way very soon!   And although none of my other kids have needed formula, I have to look at Ava in a completely different light, certainly because her story is quite a bit different from theirs!

As well, up until now I have been trying to get Ava to breastfeed with very little success.  And unfortunately because I had such wonderful experiences nursing my other babies, when Ava cries at the breast, or gags and won’t nurse, I take it to heart and it hurts.  So now I’m really hoping to teach Ava to take a bottle, realizing that between the ng tube and the bottle, the bottle is the lesser of 2 evils.    My biggest concern right now is that Ava won’t ever take anything orally, and I don’t want to miss a window and have her tube fed for the rest of her life.   Even teaching her to take a bottle is going to be a long and hard road –  it already seems that she is afraid to suck – but I’m going to enlist all the help we can get and maybe if she gets comfortable sucking again, it will open the door to more breastfeeding, who knows.

Oh – and please pray for Aleeda… the little girl with Ava’s same heart condition who is waiting for a heart… I did a post about her here.   I saw her yesterday and unfortunately she’s not doing that well, but we know she is in God’s hands and He is trustworthy whatever is plan for her is.

So once again we are thankful for everyone’s prayers and support – and we know that God is definitely answering our prayers and we will just continue on this journey, one step at a time!

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3 thoughts on “Oh good grief…

  1. Welcome home! So thankful that the doctors all agree she is doing well enough to come home. Hope you feel a lift in your spirits tomorrow morning after a solid 6 hour sleep tonight! Yay!
    Love that little girl of yours. Praying constantly for all of you. You’re all so close to my heart. God bless you.

  2. So frustrating, but so wonderful that she’s doing well enough to stay home! Oh, the breastfeeding. I went through that with Kingsley. He was able to breastfeed, but I had to let them give him formula in the hospital all the time. It bothered me, but i had to let it go. You do what you have to.

    You guys are constantly on my mind. I hope this extra sleep rejuvenates your spirit.

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