Two steps forward

August 2nd, 2010

One step back.

Verity’s X-ray early this morning showed that her lungs were wet, and there were again a few collapsed areas, so she is still on the ventilator.  They did give her two C-PAP trials today, and she did marvelously well at breathing with this support.  C-PAP stands for Continuous Positive Airways Pressure.   It is pressure that helps to keep her lungs properly inflated while she practices breathing.  They are giving her some respiratory therapy today, and between that and the C-PAP breathing exercise and the regular lung suctioning that they are doing, we are cautiously hoping that tomorrow’s X-ray will again be clear.

If it is, then tomorrow will be the day they remove that ventilator!  But we are prepared that her lungs may still not be ready to go it alone.

She failed her pacemaker test again this morning, with no improvement over yesterday.  Dr. Clark said that her rhythm could come back at any time, but to be prepared for another surgery on Friday to put in a pacemaker.  This would require her to go back onto the ventilator.  Also, since it is looking to the doctor like she probably will have that second surgery, he will not okay some of her other lines to come out, since they would just have to be put in again in a matter of a few days.

They decided to allow her to get a little breastmilk through her tube today, since she needs protein and fat in her diet as well as the glucose she gets through her IV!  She has an NJ tube, or a nasojejunal tube, that goes from her nose down through her stomach into her small bowel.

We were well prepared for these setbacks, and I don’t think I would have found any of these things discouraging in and of themselves.

But I found myself crying to God in the bathroom today.  Very briefly, since it needs to stay available to fifty waiting families. <rueful smile>

Her 7 am to 3 pm nurse made it clear to us first thing this morning that we were not welcome to stick around or to ask questions.  That made for a tough day for me, as I am feeling very disconnected from Verity.  ‘Specially knowing that the time I can hold her is now being put off, since that can’t happen as long as she is attached to the breathing tube and external pacemaker.  I am hoping to spend a bit more time with her tonight.

Either way, I knew that this would not be easy breezy, and I can’t faint at the first whiff of trouble, despite my faint heart.  My job is to encourage my heart in the Lord, my refuge.

“Hear my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint.  Lead me to the rock that is higher than I, for You have been my refuge…”

And just now, an Amish mother here in the parents’ waiting room is letting me cuddle her baby girl for her while she talks on the phone.  (She knows I have ten children, and trusts me.)  A smidgeon of salve for a sore heart.

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19 Responses to “Two steps forward”

  1. Sandie says:

    I’m sorry you did not see the improvements you had hoped to see in Verity today.  I know it is disappointing, no matter how prepared you are.  I’ll keep praying for Verity and for you.  Hugs! (pssst! you can ask to speak to the charge nurse, or shift supervisor, if you have concerns about anything re:Verity’s care.  Even if it is dissatisfaction with a nurse.  You are Verity’s best advocate, don’t let any of the nurses intimidate you!)

  2. Angiedawn says:

    Oh Susanna….I am so sorry…..about the set backs,the nurse….everything.Praying for her and you.

  3. Aunt Carol says:

    Will continue to pray.  That day nurse needs to be reported and asked to be taken off of your baby’s case.  I wouldn’t want to have my child in the hospital and not allowed to be close by.  It’s your little one.  You are the mom and know little Verity better than anyone else does. I, especially, wouldn’t want that particular nurse alone with my baby.  Am praying for you.

  4. Denise says:

    ((((((HUGS))))))
    I was checking in regularly– and when there were no updates– I was HOPING that it was either (1) you were with Verity or (2) you had many visitors…… either way I was hoping and praying you were having a GOOD day.

    I am so sorry about the nurse mostly–  because I know that you are prepared (as well as you can be– mostly you are resting in Jesus, I know) for the physical set backs Verity might have for the recovery– but to have a nurse like that– just is TERRIBLE…… really—- I’m not good at standing up for myselft sometimes– but maybe Joe could say something–  especially if you are going to have her for a few days— (like the other nurse).   Either way I WILL PRAY HARD for you and even MORE for that nurse– to either have a change of heart (and attiude) or to be assigned to another child. (lets go with the change of heart– because NO ONE deserves that).

    Anyway–  I am sorry you didn’t have a better day– but I am so thankful that you are so easily resting on your ROCK– your Refuge!!

    Hugs and Prayers——

  5. Susanna says:

    We did eventually talk with a neutral party who asked us if we would like to have her taken off right away, but we opted for her not to be assigned to Verity after today.  And he assured us that she wouldn’t know that we had said anything about her.  He did say that it wasn’t just our perception, and that she has given this trouble before. :(

  6. Susanna,
    I am sorry about the delay in holding her- I know your arms must ache to! I also am sorry about the nurse, and so glad that you talked to someone about the situation. Unfortunately, there are some nurses who are only doing it as a job without the “caring” aspect of nursing. I never could understand that with some of my coworkers. Anyway, we are all praying for you all and my oldest daughter (who just turned 9) asks me if I’ve checked on here several times a day… we have all fallen in love with your precious babe over the last few months! God bless you and keep you!

  7. praying here!  ((((hugs))))

  8. Crystal (content2Bhome) says:

    I have been praying for your family and your sweet baby.   May God wrap you in His comforting arms tonight!
    All our love and prayers!!

  9. cindy says:

    Oh Susanna,
    I too am sorry to hear of the setbacks and nurse, and glad you got her off Verity’s assignment.  I know from ICU work the vent, pacemaker etc. are slow processes, her body went through so much.  Just thank God for the technology and knowledgeable, caring professionals and remember Romans 8:28 will never fail.  You’re all in our prayers.

  10. Anna T says:

    We’re continuing to pray for you.  I’m glad that you said something about the nurse and I’m certain that it was nice to snuggle the sweet baby girl.  ((Hugs))     

  11. Nancy says:

    Susanna,
    So sorry to hear that today was not full of good news. I well remember waiting after Rebekah’s surgery to be able to hold her again.  Be prepared that it may not be very comfortable for Verity when you are allowed to hold her.  Rebekah was in a good deal of pain when she was picked up, held, etc. for several weeks after her open heart surgery.  I think it was harder when I COULD hold her but for her sake had to leave her lying still.  I pray that tomorrow will be a much better day for all of you!

  12. Amy Morris says:

    I encourage you to listen to Sandie, and continue to be Verity’s advocate in all circumstances. God has blessed you with Verity and allowed you to take care of her, so follow your heart on these issues. I am happy you spoke up and will not have to deal with this again today. And I am sure you made the best of it by showing the staff God’s love :)
    I continue to pray for your entire family. I also want to thank you for this blog and allowing us all to follow this journey with you.

  13. Susanna,
    Why, oh why, will they not let you in there with your baby girl?  How frustrating.  So thankful for the woman who let you hold her child.  How hard and how blessed that must have been. {{HUGS}}

  14. Cole says:

    Oh dear- praying for dear Verity and you- and for that day nurse’s poor attitude. She needs to be kinder in her manner. I’m sure she is thinking of Verity- but she should not be so callous. Hugs

  15. Adina says:

    Still praying for that beautiful Verity every day and for your sanity at ICU life.  When David was born we had 6 weeks in the NICU on the vent for 3 weeks (I didn’t hold him until day 13 of life), there were definately nurses I loved and nurses I did not enjoy.  I hope she shows some improvements soon, hugs to you.

  16. Sarah says:

    Oh, Susanna………….I can so picture you there in that waiting room, walking those halls, getting off and on the elevator (we were there with Mary last June)………much love and many prayers.  How I’d love to come and see you!  Thank you for the beautiful pictures………they help to keep you and Verity extra close to our hearts.  Keep clinging to Jesus, giving Him your sacrifice of praise.  I am especially praying that she’ll be able to come off the pacemaker……….

  17. Denise says:

    Someone shared this verse on FB today– and I wanted to share with you….

    Job 42:1-2

    Then Job replied to the LORD :
    “I know that you can do all things;
           no plan of yours can be thwarted.

    I KNOW you know this– but I just wanted to share as maybe an extra encouragement.

  18. Joy Horton says:

    ((((((((((((hugs)))))))))))) You are so precious, Susanna. I can ONLY imagine how hard it has to be for you to not hold your precious Verity when the ONLY thing we mamas want (need!) to do is hold our babies.

    You are SO right to comfort yourself with His Word and I am so glad to hear how it is sustaining you.

    I love you and am aching for her to be in your arms asap.

  19. Marilyn Osborn says:

    My heart is going out to yours….praying, friend.

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