May 23, 2011

Over the Hump (this one, at least...)

Thank you, thank you, thank you all for your prayers - specifically for praying that Clara would experience some relief from her morphine withdrawal.  Once again, they have been answered.  She had a much better day today and was back to her happy, calm, easy-going self.  This morning when the nurses reported that she had been very agitated over the weekend, the doctors were immediately concerned about her withdrawal and wanted to give her more ativan (she hadn't had a single dose of Ativan since Thursday morning).  The nurse didn't really seem to think that ativan was the issue or that it would solve anything, but assured the doctors that if Clara woke up and was fussy or seemed at all uncomfortable we would give it to her.  Clara must have heard that conversation in her sleep, and we know how she likes to defy doctors and their expectations, because when she did wake up she was as happy as a clam.  Fortunately, she stayed in a great mood all day long and we didn't have to give her that ativan.  I'm so thankful to have not taken a step backwards again with that.  It was a tough 48 hours of morphine withdrawal, for sure, but we knew that this detox would be difficult and that there might be some hard days.  As long as it doesn't seem to be causing her to have an episode of pulmonary hypertension flare up, we'd just as soon try to push through and get her weaned.  Today, she showed us that she could do that!  Hopefully we're over this big hump of switching her dose from every four hours to every six hours and we can begin weaning it again some more tomorrow.  We did wean her oxygen flow again today, so we're now down to 400cc on it, still at 21%.  She's doing great and I really don't think she needs the oxygen at all any more, but we're taking that slowly just to be sure.  It should be all the way off by the end of the week and I know she'll be glad to have the nasal cannulas out of her nose.  She's been pulling on them, as if to say, "I've had quite enough of these, thank you very much!"

I have to say, this whole experience has certainly taught me a lot about faith and God and certainly about prayer, but it's also kind of leaving me shaking my head a bit.  I'm not sure I ever really had a very good understanding of intercessory prayer and while this whole experience has certainly convinced me of the power of it, it's also turned my personal theology upside down.  I've always taken issue with the idea of prayer being like a magic genie.   I've never really thought that it was as simple as "We ask, God gives."  I mean, sure -that might happen sometimes - but a lot of time we ask and we don't get.  There are plenty of people out there praying for healing right now that may not receive it.  There are lots of people praying for a lot of things and not hearing the answers that they desire, hope, expect, or even deserve.  I've never doubted that God was capable of performing this miracle and I am continually giving him the credit, glory and praise for doing so.  I just wish I understood better "why us?"  Why have we been so fortunate to have our prayers answered time after time after time?  It seems like every time I write on this blog that we are standing in need of prayer with a specific issue, there are thousands of you out there who begin to pray fervently on Clara's behalf.  And without fail, your prayers have been answered.  God continues to shower us with His mercy and grace and is fulfilling all these requests.  It's an incredible thing to be in the middle of and it has really changed the way I understand intercessory prayer.  That is to say - I think I probably understand it even less than I thought I did, but I am sure grateful for the power of group of people diligently asking God and expecting His blessings.  I know it's a miracle to watch Clara getting better and stronger and more alert and healthy each day.  But I'm also just amazed at the miracle of prayer.  I've never experienced anything like this before and it's changing my heart to see how God has heard your cries and pleas and is responding to them time after time.  It is so cliche to say, but I just can't think of any other words and it's ringing truer for me now than I have ever known before: Prayer is powerful.  So so powerful. 

Aside from the relief from morphine withdrawal and the return of our sweet happy baby, today was fairly uneventful.  She's continuing to breastfeed well, but is not getting anywhere near the full amount of her feeds that way, so we're still having to give her tube feedings, too.  She got her first bottle today since we will probably have to have her eating from the bottle before we can go home.  I'll continue working on breastfeeding while we introduce the bottle and after we get home too, but since we can't know for sure how much she's getting from the breast and we can from a bottle, we will need for her to learn how to bottle feed.  (Also, it would be nearly impossible for me to be at the hospital for every feeding, every three hours, around the clock).  She didn't quite seem to know what to think of the bottle today.  It's a little unusual that she's breastfeeding so well, but couldn't take a bottle today; that's backwards from most babies.  But the speech, OT and PT folks didn't seem surprised by it, saying that it's just a totally different feel and experience.  We know that she can latch on, suck and swallow, so hopefully we'll get those skills transferred to the bottle with a little practice.  She's getting 80ml every three hours in her tube right now, so we'll need for her to be able to drink that much orally before we can go home.  We've got a long way to go....

I know I say this every night, but thank you for your prayers.  I hope you know how much they mean to us.  Please continue to pray for successful morphine weaning, shelter from the side effects of withdrawal, and growing success with oral feeds, both bottle and breast.  Of course, as always, pray that she will be protected from infections or other secondary issues that would cause a setback and pray for the physicians and staff who are caring for her.  Day by day, we continue to experience miracles and are thankful tonight especially for the miracle of answered prayers.
 
Clara's first bottle

"Hmmm.... what do I do with this?"


Eyes of confusion!

P.S.  Happy two month birthday, Clara!  WOW!!

P.P.S. Thank you for the many of you who have asked about Penelope and are continuing to pray for her as well.  She's having a tough time.  She is still on ECMO and is having several complications that Clara did not face such as infection and bleeding.  She had her second circuit change today and we are hoping and praying that will give her the boost she needs to come off the machine and begin her recovery.  Thank you for continuing to pray for her and her family as they are in the thick of this difficult time.

15 comments:

  1. I love the last photo of Clara. She is truly asking, "What are you doing to me, Mama?!?"

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  2. so cute! love the dark hair coming in too. We're still praying for you, Clara! love you lots,
    Katie Davis

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  3. Thank you, Chrissy, for your honesty and vulnerability in sharing.

    Hard to tell from the pictures -- is that nursery issue bottle or one with the wider nipple that emulates breastfeeding? The latter may help...may not.

    We continue to pray and remember you all.
    Melissa W.

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  4. Aww... the last picture is adorable. She'll figure it out in time. I have no doubt about that! Clara also looks great in red, just like her Mommy!

    Happy 2 Months Clara!

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  5. Baby Clara you're the coolest kid on the block... that bottle won't slow you down for long!

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  6. I wore my Pray for Clara Mae Hardy shirt today! I always have people ask me about it when I have it on...SO glad Clara had a calm day...we will continue to pray for her and add Penelope to our prayers. Happy 2 Month Birthday!! Love, Mary Ann

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  7. I have a bucket...and into this bucket go all the questions for which I cannot find answers. When I die, I will haul my bucket with me to heaven where I will have an eternity to ask Jesus, face to face, each and every one of them....if I still need to know the answers! One of the best gifts I have ever given my children was their very own bucket! Go easy on yourself...God is sovereign.

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  8. We remain ever prayerful and hopeful for you all. She is amazing, just like Mommy and Daddy. Love to you all. God is Great!

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  9. It is so amazing to follow your story. We are sending prayers from Arizona. She is a beautiful girl and has amazing parents and grandparents. God is so totally awesome.

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  10. The Mystery of Faith! But here are a few things I've learned in my faith walk: Prayer is so powerful because it is about submission to a God of grace; about allowing the Holy Spirit to intercede for us in those times when there are no words for the fear and hurt; letting go of our pride and admitting that we have never been in control, but realizing as Jeremiah says, that He has a plan for us. I only know that when I am on my knees and at my wits end, God does his best work. Why you? Only The Father, Son and Holy Spirit know! But, Clara's story has brought many people into closer relationship with their Maker by illustrating the power of expectant prayer; I'm certain of that. It will be thrilling to see what He continues to do in her life! You may be nursing a little evangelist! - KK :)

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  11. She is such a beautiful baby! I love those big curious eyes. Continually praying for you!!

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  12. Love the mother-daughter eye contact ... powerful. GOD knows a good thing when HE sees it and HE had to let this all turn out okay. You are a precious family .... in HIS sight and ours!

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  13. Giving God all the glory,honor and praise for Clara Mae Hardy!!!! Yea for all her accomplishments today! Thank you God for continuing to heal her body and bringing her a step closer to going home. Will continue to pray. Clara Mae Hardy you are SO beautiful!!!!!

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  14. Our GOD is a wonderful GOD ! Only when we get to Heaven will we know all the answers. They may surprise us. I just feel we all have the ability to join in a mission for our Father. It's an honor to be able to work with the Lord in helping bring about miracles! There's no telling of the chances we've had to participate in GOD's work and have missed it. Praise GOD for Clara and her mission.

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  15. So happy Clara's doing so well and got over the withdrawal hump! Is there any thought about using a bottle that's more similar to breast feeding since she's doing well with the nursing but not the bottle? I have a friend whose daughter totally fought the bottle, but she ended up finding one bottle that she'd actually take that was supposed to mimic breastfeeding.

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