Stabley unstable

I forgot to mention the other term I learned yesterday – stabley unstable.. That is what Finley has been. When I say Finley is stable- it’s not like when talking about a normal baby- she is somewhat  stable for a critically ill baby. Stable is still good, it just needs to be understood in the right context.  She has had her bad moments- about 3 episodes of de-sat in the last 24 hours (one was because they did try to move her vent settings down, and she let them know she wasn’t ready).  But she has had good things too- like her blood/gas numbers were good enough that they wanted to try the lower setting. Also, they said that it looked like her lung expanded a bit more (can’t recall which one) which should help a little with the PH (pulmonary hypertension).  She opened her eyes a little bit today too- and it was so great to get to look in her (what appear to be) blue squinty eyes. She has been pooping – which is really good that the bowels are working. She is getting a little jaundiced and is starting to swell some. They say take things each hour at a time.

I am happy that my milk has been coming in – each pumping I am getting more. It is the only tangible thing I can do for her, so that is my full time job right now.

Time passes differently in a hospital – I keep forgetting what day it is and it just doesn’t seem right that Finley is not even 72 hours old yet. Thank you so much for the messages, texts, emails, etc. We really love reading them!

Yesterday was a turning point for me in some ways emotionally because I think it really hit me that we are in fact on a long journey – another mom used the term, marathon. I think in some ways even though I knew this information at a cerebral level, it really just sank in yesterday.  I keep reading through the verses that have given me strength up until this point and I know pretty soon I will have them all memorized. Walking in faith and trusting in God has gotten me this far, now just need to do all the same things for this next leg of the journey.

Rowan and my parents came and visited today and we spent some time in the outdoor Children’s Garden – it was my first time off the 2nd maternity floor since Thursday. It was a good first step in reminding me of the world outside and eventually moving towards making myself leave here occasionally.  It’s a beautiful garden if you ever have the opportunity to see it.

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5 thoughts on “Stabley unstable”

  1. Liz, I am amazed and so proud of how strong you are. Beyond just the milk, which is a wonderful gift for your little girl, you are providing her with so much more just by being there and loving and supporting her. I hope the prayers that have surrounded your family through out this pregnancy continue to strenghten you and support you in this long journey. We love you and will do anything to help however we can…please let us know what we can do!

  2. I am praying that the Lord gives you the strength to make it through each day. May He hold you in His arms and give you peace and good rest. You family and Finley are all in my prayers.

  3. I am praying often and thinking of you all and Finley. I am so happy to hear that she is doing really well (in the context of CDH =)). For me, it was so important to celebrate every good day and every good hour, and every step in the right direction. I know the nurses and doctors are always trying to be cautious and remind us we have a long way to go … but it is so important to celbrate the success as well, and believe that tommorrow will be a good day. Finley is a superstar-she can do this!
    Hugs,
    Jennifer
    Mom to Dakota 12-25-2008 R-CDH survivor

  4. I am thinking of you and saying prayers for strength, peace and lots if milk! You have amazing strength and faith and this will see you through the marathon of emotional highs and lows. Hugs to you all!

  5. Great job with all the pumping. What an awesome and wonderful gift you are giving your sweet girl. Liquid gold!
    Remember to take little moments to take care of yourself. Get some fresh air, see the blue sky and feel some sunshine on your face.

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