Milk

Kinda a funny name for a post I know, but it’s all I can think about it.   First off, Ava is having another great day, and she is weaned off her morphine completely!  They are still giving her some Tylenol to help her if she is still uncomfortable with her chest tube and what-not, but it’s so exciting that she’s off the morphine especially since in her hay-day she was on so much that I was afraid she would never been able to wean off her narcotics. 🙂

But now for the most exciting news…  remember how I had mentioned that Ava had chylothorax?   Basically that means that at some point – maybe during her chest closure – her thoracic cavity got nicked and then lymphatic fluid or chyle was leaking in her chest and showing up in her drain tube.  And that’s not good.  That extra fluid can also affect her heart and lungs and that’s very bad especially in a baby like Ava.  So to help her heal, she was taken off my milk and she was getting portagen, this horrid fat-free formula that they typically give for 6 weeks.

It really bugged me that she was on portagen, even though I knew she needed it.  But I also knew that she never had had that much chyle leaking and that there was even some debate about putting her on the portagen in the first place.  So in my complete lack of knowledge of hospital protocol, I got this big idea that since Ava had been on portagen for over a week and still had a chest drain tube in, that maybe they would consider trialing her back on breast-milk.  My reasoning was that since her chest drain tube was still in, it would be an easy way to see if she was still leaking.     One of the nurses encouraged me to ask, especially considering the cardiologist that was on was the one most likely to agree, and so 2 days ago I asked him right after rounds.  And instead of saying ‘no’, he said ‘maybe’.

As you can imagine I was surprised, but pleased, and when he came by later, I questioned him further and from what I gathered, he just didn’t want to do anything that would put her back a step in terms of breathing, and he made it seem like he would consider trialing her on it some time next week.

Yesterday when I went to see Ava,  our nurse that day, Tori, told me that she had some exciting news for me, and that they were going to start trialing Ava back on breast-milk that day!  The next feed in fact.  I was so excited!  So that was yesterday and she’s been on it now for over 24 hours and so far, so good, they haven’t seen any chyle leaking into her chest tube and that’s great news because typically it would have shown up by now.   So please pray that things would continue this way, my milk it’s so much better for her and it encourages me to keep pumping, which is incredibly tedious.

And more good news, Ava is doing very well off of CPAP, she did 12 hours yesterday and she’s been off today since 7 am with no plans to put her back on unless she needs it.

Things are looking up, but again, cautiously optimistic as always. 🙂  But she is so good now that really doesn’t belong in the cardiac critical care unit,  I was teasing her nurse today that I was leaving her with the best paid babysitters ever and I hope he enjoyed watching her sleep.  So different than a few short weeks ago when she was so much work to care for. It also means that within the next few days she should move up to the 4th floor, where the care wouldn’t be as intense and which also means one step closer to going home, praise the Lord!

Wow,  what an incredible and amazing work God is doing in Ava.  And I know that things could turn around anytime and who knows when we will be able to leave, but I’m so thankful for the small mercies, like even allowing her to be back on breast-milk even if only a couple of days and that her breathing has improved so much.

Our sweeet sweet baby… sleeping today in a big girl sleeper since she can actually wear one now!

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And I shouldn’t forget to mention that yesterday we had a family visit with Ava!   Our nurse and the charge nurse went out of their way to move Ava to a separate room, provide some toys and crafts for the kids and we could all visit with Ava and just relax together, what a blessing.  They have been so good to us at Sick Kids, it really is an incredible place.  As well we had some friends come to visit yesterday it was so wonderful to see some familiar faces and spend time with friends, thanks guys!

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So it’s been a good couple of days, we are counting our blessings and still trusting in a great God!

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12 thoughts on “Milk

  1. Great news Lisa! So happy you can give her your milk and that she will soon be moved to a step-down unit. Thanks for also posting the photo with you and the kids. Continued prayers with Ava that she will continue to get stronger each day.

  2. Lisa – What a heartwarming picture of you with all your children! Think of you often and am in awe of your strength. You are an amazing woman and mother. Sending hugs and prayers to you and yours!

  3. Great job advocating for Ava! I am so glad you pursued the breastmilk — we will continue to pray that Ava not only tolerates it, but thrives on it. The family picture with you and the kids is great — Sarah looks so happy and Ava appears like she is looking at the camera too.

    Blessings to you and your family. God finished 2012 off in fantastic fashion. Can’t wait to see what he does in 2013. He is on the move!

    Dayna

  4. Hi Lisa, that’s great that she’s on breast milk. PraIse God for this answer to prayer, and no more leaking. I was reading this verse today and thinking of you. Happy New Year!

    My Help Comes from the Lord
    A Song of Ascents.

    121 I lift up my eyes to the hills.
    From where does my help come?
    2 My help comes from the Lord,
    who made heaven and earth.

    3 He will not let your foot be moved;
    he who keeps you will not slumber.
    4 Behold, he who keeps Israel
    will neither slumber nor sleep.

    5 The Lord is your keeper;
    the Lord is your shade on your right hand.
    6 The sun shall not strike you by day,
    nor the moon by night.

    7 The Lord will keep you from all evil;
    he will keep your life.
    8 The Lord will keep
    your going out and your coming in
    from this time forth and forevermore.

    Psalm 121
    English Standard Version (ESV)

  5. Sounds like a Good end to 2012 with the promise of more Good to come in 2013. God’s blessings upon you , your family, and your medical staff.

  6. So thankful for all God is doing. I love seeing you hold her while being surrounded by the other four. Beautiful family. God is good! Happy new year to you. Blessings.

  7. That’s wonderful news Lisa! So glad to hear things are progressing so well and that Ava is tolerating the breast milk! What an answer to prayer!
    Wishing you and your family a very happy new year… it’ll be a year of many changes but God IS faithful and He’ll carry you through it all…one day and one step at a time…praying you’ll be home soon!

  8. Lisa, this is a wonderful update!! I was wondering what was happening with “milk”. Hopefully the tediousness of the pumping will soon be gone, and Ava will be breastfeeding!! And good for you asking the questions you did!!!
    What a wonderful photo of you with all your children!!

  9. God’s mercies…new every morning! So great what God is doing. ” He is my praise; He is my God, Who performed for me those great and awesome wonders I saw with my own eyes. ” To Him be the glory. Continuing to pray for you and your family, that you are filled with joy, strength and thankfulness.

  10. Oh Lisa, this is all so exciting to hear… I love the pictures. Nice to see you in them.. Always praying for you guys and sending you lots of love…

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