How about…

July 8th, 2010

…NO NG TUBE!!!  Woooohoooooooo!!!

What. An. Amazing. Day.

Thank you all for praying for us!

Doctor Morton didn’t agree with the doctor on call that Verity needed the feeding tube just yet!

But she was going into congestive heart failure.  Remember what he was expecting to see on the 19th?  He saw it today.  So he prescribed the Lasix for her, which should help her heart work better and not wear her out.  He said we should see her energy levels improve after two or three doses.  She got her first dose tonight.

He told me that she is tolerating her heart failure very well, better, in fact than I was!  (I am looking fairly haggard these days!)  We are hoping she does well on the Lasix and that the dosage doesn’t need to be increased too quickly.

He wanted to draw blood in order to get some baseline levels of things like her potassium and sodium, and something he called heart failure hormone.  Two nurses tried for an excruciatingly long time to get barely the amount of blood they needed.  They tried in several places, including her head.  <Gulp>  I was so blessed, once again, to see the concern and kindness of the staff toward our little girl.

The doctor recommended I bottle-feed her rather than syringe-feed, and to use a fast flow nipple.  I can try to nurse her beforehand if I want to, but her total eating time should not exceed 30 minutes every three hours, and every four hours through the night, even if she does not take in the full amount each time.  He said the longer feeding times were wearing her out so much that she was still worn out when it got to the next feeding time.  It will be tough for me to limit her feeds until she actually starts taking in the full amount!  But I am taking his word for it that she will eventually perk up and take in what she should.  Today she is getting about half the number of ounces that she needs.

He also told me to add human milk fortifier to the breastmilk I give her.  This should help her get more calories for her hard work, so she can gain weight again.  They sent along the rest of what they had on hand at the office–thirteen little packets, one packet to be added to each ounce she drinks.  We found out that the drugstore can order them in a box of 50 packets for $70!  That is less than a three day supply!  Joe found them online for $55 for the box of 50 packets.  We laughed and said it looks like another impossible situation for God to handle!  More on that in a minute…

Yesterday our friends took the children again to allow me to sleep.  I am so thankful that I went into last night comparatively well rested!  What a helpless feeling it is to be unable to feed a baby what she needs!

Then this morning, I called another friend who lives nearby, and was planning to visit and bring a meal this afternoon.  I asked her if she could come in the morning instead and stay with the children while Verity and I were at the doctor.  She told me she had the whole day free, and she stayed to help until close to suppertime!

Another friend with her own large family, this one from an hour and fifteen minutes away, called this morning to say that she had read our prayer request.  She decided this would be the right day to bring all the meals she had been making and saving up for our family, all unbeknownst to us!  When she arrived, and heard that I needed to run to the store for bottles and nipples, she insisted on doing that for me, and also brought back some fresh produce.  And refused to allow us to pay her back for any of it.  And did all this with all her own little ones in tow!

And then when Joe came home and brought in the mail–

<You’re going to start thinking I am making this all up, I just know it!>

Joe brought in the mail, I say, and in a note from another aunt was a check for $500 for Verity’s medical expenses!

*TEARS*  It is too much.  I am speechless.

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10 Responses to “How about…”

  1. We serve a faithful Lord!  Will continue to pray for you and for dear Verity.

  2. I feel so badly, where’s the time going, I came here to see how things were, and there was a whole page to read!  The Lord has been so busy!  :D:D:D
    Verity is so beautiful Susanna, I shared the pics with dh and we were both just exclaiming, “she is so precious!”
    For He is Good, and His mercy endureth forever!  We will keep praying!  :)

  3. Ruth Einfeld says:

    What an awesome testimony to God’s faithful provision.
    I hope she responds well to the higher calorie milk, and that she does well with the fast flow nipple…we couldn’t do that with Esther as she would get milk up in her sinuses and also down in her bronchial tubes, so listen for “junky” breathing or snuffly nose after feeding.
    Esther was on fortified milk for a long time, and she still have baby cereal added as she tend to get “junky” still if we don’t have her milk thickened a little.
    Lasix was a miracle drug for Esther…that plus a few other meds are what finally allowed her to come home.  She was able to go off all her meds except her thyroid med withint 2 months of her surgery!
    I hope you find encouragement in my sharing our experience

  4. It is very inspiring and encouraging to hear how the Lord is blessing you all through these trials Susanna. May He continue to uphold you and bless each one of you greatly. And love the pics of Verity below, she is such a sweetie.

  5. Esther Glick says:

    Oh Susanna, God is so faithful in poviding for your every need! what a testimony!! Your feeding regimen w/ Verity reminds me so much of what Jadrian’s used to be like. We also needed to fortify the breastmilk/ or formula for him. he didnt have the energy to breast feed and we had a 15 min. time slot to bottle feed. At one point it was every 2 hr.s around the clock! And most of those time it was force feeding because he didnt want to eat. I know how exhausting it is to your body &amp; sanity! :) Esp. the night feeds, trying to feed a baby that only wants to sleep! he eventualy got an NG tube which we used for 6 month. And now has a feeding tube in his stomach. it’s been a life saver for him. I think its so wonderful how much verity DOES eat and how chubby she looks! Jadrian is also on lasix. His "normal" saturations run in the high 70’s to low 80’s. when he cries long and hard they will dip to high 60’s :( I know everyone has a certain something that worked best in their situation, but if you ever need to try different bottles, Dr Browns was the only one Jadrian could use for a long time. He wouldnt swallow any air with them and he def. could not tolerate a fast flow nipple! Thank you for sharing all the pictures of your sweet blessing! I know it takes a lot of time to post, but we sure do enjoy every one of them!! Love &amp; blessings to you today, Esther

  6. That is Awesome Susie!! Love, your brother.

  7. Joy Horton says:

    Susanna –

    tears and speechless here, too!! You’re doing SUCH a great job, even though you’re worn out. I am so glad to hear how the Lord is providing for your every need!!!! Praise be to Him!!!!!

  8. Marci says:

    My faith is SOARING, Susanna! Thank you for taking the time to declare God’s faithfulness! You are giving Him all the glory and blessing us all with your testimonies! The Lord is great and greatly to be praised! And try to sleep when you can.

  9. Marilyn Osborn says:

    tears!!!!!!  oh, He is SO GOOD!

  10. *tears*  Thank you for continuing to share God’s provision for you during this tiring time!  I pray for you each time I nurse Solomon (at least!)  My girlies ask about Verity often.  We are still lifting you in prayer!

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