Another looong dr. visit

July 15th, 2010

Our appointment was at 9:45 this morning at the Lancaster branch office of the Hershey Children’s Heart Group.  Was I ever thankful we already had that appointment set up!

We’re home now and through another feeding cycle, so we’ll see if I can post something coherent here before the next cycle starts!  (We have to stop telling our children that we don’t think this appointment will be as long as the others!)

Does anyone else remember the song by Don Francisco, “Love is not a feeling, it’s an act of the will?”  Not a particularly delightful song, and that phrase is all I can remember of the lyrics after these twenty or so years.

Well, last night, for me, TRUST was not a feeling, it was an act of my will.  I had to act on what I KNEW to be true in spite of all my feelings shouting at me to listen to them instead.

My feelings said, “I don’t want to give my baby to God.”  When in reality there is no question of giving Verity to God.  What a superfluous idea when she already belongs to Him.

My feelings said, “She is safer if I stay awake and watch over her.”  When in reality my staying awake would have robbed me of needed sleep without giving her an iota of added benefit.

My feelings said, “I am right to worry and be afraid.”  When in reality, worry and fear are unjustified disobedience if God told me not to be anxious for anything, not to fear, and to trust Him instead.

He brought the verse to mind, “You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You.”

Lord, You will have to help me trust You with this baby.  I choose to trust you.  I am trusting in You.

This morning, Verity had another echocardiogram and EKG.

The nurse and the cardiologist, Dr. Johnson, listened carefully as I described how she did in response to her first level of Lasix, started at twelve days old.  After three doses, she had one good day and then started going downhill again.

And how she did in response to the doubled dose five days later.  After three of the increased doses, she had a partial improvement for about three feeding cycles, and then started going downhill again.  Except this time, she went lower and got there faster.

Verity’s heart and lungs are on overload.  Her heart is working hard even when she is asleep, her lungs are filling with fluid, she is laboring to breathe because of this, and she is failing to eat enough calories to power all this activity.

The *ideal* would be for her to reach a minimum of two months of age before her open heart surgery.  Not only would her heart be bigger and easier for the surgeons to work on, but babies do better with anesthesia after the age of two months.  I did not ask what “do better” meant in this context.

So the *ideal* goal would be to help stabilize her enough to put on weight and grow for six more weeks.

But so far, she hasn’t been on an *ideal* track.  Based on all the information that the cardiologist now had, both this morning’s test results and her history, he said it is looking a lot like she will need surgery before then.

We have basically two tools left in the toolbox that can be tried.  One, he doubled her dosage of Lasix again, bringing it up to the maximum dosage level that can be given to a baby of her weight.  He said “she may surprise us” and respond by stabilizing and getting into a good gaining pattern.  If she does gain, they can increase her dosage proportionate to her weight.

If she simply fails to eat enough, but in other ways she looks good, they will try tool #2, a medium chain fat added to her diet to bring her total calories up even higher.

There’s another medication they cannot give to babies with Down syndrome because it compromises the immune system, and they already have lower immune resistance.

Anytime we can see “increased work in breathing,” or “decrease in feeds,” we are to call in, day or night.  The whole team is kept informed as to all the details of her case, so that her surgery could be scheduled at any time with any of the surgeons.  They told us that there are very few heart surgery babies in the loop right now, and that we should not be hesitant to call, thinking that the staff is over-loaded with cases.

I asked about the naso-gastric tube, and he said if she gets to that point, she needs to have her heart repaired.  I must confess that I was relieved to hear this.  The hidden blessing that may be in an earlier surgery is that she may be the more likely to successfully breastfeed afterward than if she is bottle- or especially tube-fed for months beforehand.

For those of you who aren’t belabored by details, or even find them intriguing, last Sunday was the last day that she took in 16 ounces, the minimum daily amount that she needs.  Every day since then has shown an decrease from the day before.  This is in spite of doubling her dosage of Lasix on Tuesday.  So far today she is on track to take in even less than yesterday’s total of 14 ounces, since even if she takes in the best case of two ounces per feed for the remaining three feeds, she will total 12 1/2 ounces.

So her plan of care will depend on how she does, which in turn depends on how God decides she will do.

And there we rest.

Daniel with a worn-out Verity this afternoon~

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17 Responses to “Another looong dr. visit”

  1. Denise says:

    Oh Susanna–

    We are praying– we are praying….

    Your picture moved me to tears—- what love—    what love

    Thank you for taking the time to update us– I pray you can rest now.

    I took you from the ends of the earth,
           from its farthest corners I called you.
           I said, ‘You are my servant’;
           I have chosen you and have not rejected you.
     So do not fear, for I am with you;
           do not be dismayed, for I am your God.
           I will strengthen you and help you;
           I will uphold you with my righteous right hand.

    Isaiah 41:9-10

    I was sharing about Verity with my dearest friend and showed her your blog– and she had the perfect words–  “God definitly chose the perfect family for little Verity– that is evident”.  

    He chose you— He will give you strength.

  2. Patti Rice says:

    I am so glad to hear you were able to have Verity seen!
     Can you explain why the ng tube would not help her to gain weight more quickly? We bucked getting Lily one the whole week we were in the NICU b/c I was so set on nursing. Finally the head doctor came in an explained that putting the tube in was very simple and would NOT hamper breast feeding- in fact it would help because Lily could gain weight more quickly without having to work so hard at feeding, and burning calories..and weight gain would help her to wake up enough to nurse better. After I heard that and saw how easy it was to use the ng tube, I wasn’t opposed to it. As it turned out, as soon as we brought Lily home she started bottle feeding/nursing on her own, and we took the ng tube out. Over 2 months of working with her she completely “got” breast feeding- in fact she WON’T take a bottle now!
    All that to say I am just curious as to the doctor’s hesitation about the ng tube. You know how different dr’s have different approaches? I am sure God is guiding you through this, I am just one of those you mentioned who finds details intriguing:)
    Praying for you! Patti

  3. Joy Horton says:

    Amen to your trusting Him, Susanna! The act of your WILL!!! (Yes, I sure do remember that song!) Your faith never fails to inspire me, never! I love the TRUTH about you staying up and watching her would rob you of much-needed sleep and wouldn’t help her a bit. That is a hard one for mommies, isn’t it? But you are absolutely right.

    My spirit is in constant prayer for you – and I catch up with it many times a day. You are all so heavy on my heart and so very loved.

    And that picture of Daniel snuggling her is so precious! I needed to see her after reading all of that. Thank you!!!!

  4. Tracy says:

    I’ve been praying and thinking of you all through the day. May you continue to be carried by the truth of His word and promises.  ((hugs))

  5. Shari~hotfudgecustard says:

    Still praying so fervently for you all. 

    I agree with Denise — that picture is precious.  If Verity could survive on love alone, she would be a healthy, healthy baby for sure.

  6. Dusti says:

    Praying for you to continually find strength in the Lord.. and for Verity’s little body to get more calories!

  7. Jennifer says:

    I’ve been praying especially since your post last night.  Poor sweetie.  Continued prayers, especially that the lasix does the job and gets things on the right track so she can grow some more.  It sounds like you have such a wonderful team helping to care for her, what a wonderful blessing. 

  8. Colleen says:

    Susanna,
    I am a fellow MOMY who has been following your story from the day you posted about your ultrasound. I have told my family about you all and showed them the wonderful pictures of Verity. We have wept for you and prayed for you and we will continue to do so. God bless you for living out the pro-life message and for being an inspiration to us all. And Lord, please bless precious little Verity with a long life lived for your glory!

  9. Marilyn Osborn says:

    That picture brought me to tears…..the love in my heart for you all is deep.  Prayers for everything to work out in His perfect timing for His glory…..
     
    ((((((((((((Hugs))))))))))))))))

  10. Tanya says:

    Continued prayers for you.  That is a beautiful picture of your son and Verity.  God definitely placed her with exactly the right family for her needs.

  11. Margery says:

    To give you some hope, my son had open heart surgery for a TPVR repair done and a few holes sewed up when he was 14 days old and about 8lbs. He is now a 149 lb 18 yo who plays soccer and plans on building houses. And that is with the technology they had 18 years ago.

    Praying for her that all will go well.

  12. mimi says:

    She is such a precious little one,  seeing her and hearing her story has brought tears to my eyes. I am praying that the Drs are able to help her gain the time needed to get a little bigger and strong enough for the surgery.

    You are such a strong woman and my heart goes out to you and your entire family as you deal with this hard time. (((HUGS))) I will be praying for your little one.

  13. Andrea W says:

    That picture is so very precious! I’m praying for sweet Verity. ((((hugs))))

  14. jennifer76 says:

    Susanna, you are an amazing amazing woman!  I am praying fervently for you, Verity, and your whole family.  The picture moved me to tears.  What a sweet little girl and big brother.  Your obedience to the Lord is such an inspiration.  I know that you do not like to be put on a pedastal or anything but I had to let you know what an inspiration you are to me.  (((Hugs))) What a dear sister in Christ you are!  Also, so glad that the Lord has blessed you with wonderful doctors and staff to work with you and Verity and I pray that they receive the wisdom to help you and Joe make the decisions for surgery and treatments when they need to be made.

  15. Sheena says:

    Sweet Girl, I am praying for your little angel girl! This seems all too familiar to me. Hunter had Open Heart Surgery when he was just 3.5 months old to repair his AV CANAL. I can remember when our Cardiologist gave us the specifics as to what Hunter had to eat during the day and boy when he didn’t meet the 18-24 oz I was a bit frazzled. I really had to rely on the Lord and Trust in his will for my sweet baby. Hunter didn’t get to the over exerted stage, but I know that with anticipating heart surgery that its a big enough task in itself. But our God is way bigger than our fears! Praise The Lord!
    I also want to encourage you in the Breast feeding department, Hunter was given a bottle of my breast milk for the first 3.5 months of his life and would NOT take to the breast. However, the day they allowed Hunter to eat again We tried again and he nursed amazingly and hasn’t stopped since! He is a nursing fool!! So, be encouraged that even after months of not nursing it can happen!!
    Thank you for sharing tonight!!

  16. Oh…that picture just shatters me :( Dh saw the picture and broke into a prayer. I know you wish you could just tuck Verity back inside and keep her safe and free from harm and pain. I wish I could do that too, may God bless her little heart and protect her completely.

  17. Tami Swaim says:

    Ooooo how precious is this photo!  I’m so upset that we’ve had sickness in the house.  I really want to help and bring food and meet Verity.  God knows all though.  We have to trust him.  Our four youngest had viral infections. Moriah is on antibiotics and now mommy caught it.  Praying for lil Verity! …and for Mommy Too!

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