He gives more grace

July 25th, 2010

After I realized that I’d accidentally clicked the “publish” button on that last post, which happened before I had decided whether or not to publish it…

…I went for solace to the Psalms, and there was reassured by the truth that God does not prohibit His people from pouring out their hearts.  Not only that, He does not require us to wait until we have it all tidily sorted out and filed away.

How I want to learn to walk in the low places where Jesus walks, in meekness and denial of self, in extending grace to others.  Well, He wants that for me more than I want it for myself.   Not only can He do that good and necessary and painful work in me, He can give me grace to say “Yes” to it, “Yes” to Him, right at the time when it feels like my heart is in the grain grinder.  “Now no chastening seems to be joyful for the present, but painful; nevertheless, afterward it yields the peaceable fruit of righteousness to those who have been trained by it.”

So He heard my cry, and He answered by giving more grace, and the tumult in my soul has ceased.

Today was a delightful day!  The fellowship met in our home, and Verity and I were able to visit with those who ventured upstairs to our survival zone!  How we do love visitors!

On Tuesday when she goes back to the pediatric cardiologists, we plan to report that she has again been growing more sleepy, taking longer to drink very little from the bottle, sweating more, and having more labored breathing.  We think this is because she has gained weight and needs more Lasix.

We want to ask how we can balance her Down syndrome needs (stimulation/exercise) with her heart defect needs (preserve her energy to help her grow).  She has so little awake time right now, there’s not much we can do, and we’re not sure how much we should be pushing her.  We hate for her to lose all this time and opportunity to learn.

We are also concerned that if we wait too long for surgery, and she grows too used to the bottle and tube, she will not be able to regain her ability to nurse.

We are wondering if it might not be better to just get the repair done so she can move ahead in other areas.  We keep remembering that they said that they can safely do this type of repair in five pound newborns.  And this holding pattern is taking its toll on the rest of the family.

They had explained that they are not waiting for her to reach a certain weight before surgery, they’re waiting for her to be two months old.  That is five weeks away.  Until then, they want to see her growing.  Not holding steady, not losing, but gaining.

Well, she is gaining!  Five days ago, on Tuesday evening, she weighed in at 8 lbs. 6 1/2 oz.  Tonight she was 8 lbs. 14 1/2 oz–a gain of half a pound!

A few more photos, taking advantage of her one wake time of the day~

Our oldest child and youngest child.  Joseph held her for a bit before heading out with Daniel to milk our friends’ cow and feed their animals.  (They’re picking up all sorts of new skills!)

Joseph will help to expose her to a wide vocabulary, and she will help to expand his nurturing skills.  Daddy practice.

A little tummy time.  Big brother Peter is there to coax her to lift up her head.

Big girl, Verity!  We are so proud of you!  You are working so hard!  *rattling toy*

Whew!  Wiped out!  Kissing time.  Myum, myum, myum, soft baby.

How could we possibly love you more than we do?

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20 Responses to “He gives more grace”

  1. Lisa says:

    Could you nurse her for a certain number of minutes and then give her a certain amount of milk through her ng tube?  I’m guessing the doctors want to see nice precise ounces but we know for the long term, breastfeeding is important for her.  If she is gaining, I would see if the doctors would consider at least giving it a try.  Have you made them aware of your determination to breastfeed? 
    She is such a sweetheart.  Her surgery will happen at the perfect time.  And then you will be amazed when her heart is repaired.  She will certainly “make up for lost time” in the skills department when she has the stamina.
    I can’t imagine how exhausted you are my friend.  I think adding a longer night stretch was a great idea.  You are doing a terrific job!

  2. Ashley says:

    She is beautiful. Keeping her in my prayers

  3. brandi says:

    I am with you on this.  I have had several conversations with Christian women who are so grateful they don’t have a child with DS.  I just don’t know how to feel about it. I have a hard time going to church now…I am just so disappointed in the community and have a hard time getting past it.  I also have a hard time with the “made in God’s image” thing.  If Jack is made in God’s image and so is another child without DS…then I guess I wonder how. I dunno…still trying to figure so much out.  I love the passage though about Christ not being esteemed or lovely.  It’s weird that everyone wants to be esteemed and lovely and yet jesus was not.

  4. Robin says:

    I just want to chime in to say that you all are so very loved! I want you to know that, although I don’t comment often because I am trying so hard to get on and off the computer quickly, I check in here at least twice a day and my dh and children ask every evening (with great anticipation) for the update on Verity! You are both on my heart constantly throughout the day. It blesses me so much to see what the Lord is doing in you and your family! My faith feels “watered” every day when I read your post (the ups and the downs!). I know that His faithfulness to you will continue because that is WHO He is. That will never change.
    I would give my wheat grinder to be able to do a night feeding for you! (Although, I hesitate to admit, my motive is not entirely out of compassion for you… I just want so much to hold that sweet baby girl!) I know that this time is hard and I wish so much that I could do something to ease the weight that is on you. I feel somewhat useless but I can pray! I am praying lately for extra resources ($ or things) that I could contribute to help out. I don’t know what the Lord has in mind but if you come up with something specific PLEASE let me know. I would feel so VERY blessed to be helpful in some way!
    I pray that your day will be blessed with rest in some form, joy and peace that surpasses all understanding, the presence of our Lord in every moment, the reassurance that He has it all in His hands, and the ability to lay it all down and let your spirit rejoice in faith!
    With so VERY much love that I am overflowing with joy this morning!- Robin

  5. Melissa says:

    Our cardio told us they really like to get past 2 months of age before they do the surgery.  So many people aim for a certain weight, but we were told the valve tissue changes and thickens around 2 months of age and that makes it much easier to do the repair and has a better chance of a complete repair.  Verity is in my prayers, for her heart to keep up and that the correct dose of Lasix is found for her.

  6. Jennifer says:

    I just love those pictures with Verity and your boys!
    Praying for wisdom with the next things to come.

  7. Susanna says:

    Oh my, Brandi!  Emailing you!

  8. Sandie says:

    I love the pics of your sons interacting with Verity!!!  What a blessing those boys are!!
    I want to encourage you to not get to caught up on what the books say about infant stimulation and such.  She will not be missing out on anything vital.  The important things for her right now are the same as it is for any baby.  Feeding, sleeping, cuddling, caressing and sweet words, and a dry diaper, all the little things that make them know they are loved.  (Of course you will add lasix into the mix.)  Babies at this age sleep a lot anyway.  (Even if it doesn’t seem like it to us mamas.)

    You are doing an awesome job!!

  9. Kristin says:

    Beautiful pictures Susanna!  Such sweet boys :)
    I agree with Sandie on the stimulation.  There will be plenty of time after the surgery to do that.  Just keep snuggling and loving and growing that baby and don’t stress about the rest.  You are doing a great job and all of those siblings are going to be a great help too :)

  10. Shari~hotfudgecustard says:

    Just wanted to send (((((Hugs))))) to you again.  I don’t have any great words to say about the world’s opinion or especially the opinion of other Christians on accepting a baby with Down syndrome.  God knows and will help, though.

    I would dearly love to hold that sweet baby!!!!!!!!  And just give real hugs to you, too.  If we were close, I’d love to venture upstairs to visit or hold Verity so you could nap or I could fold laundry or…. something.  : )

  11. Shannon says:

    Look how strong she is, and your son, he is going to be a wonderful father someday! 

  12. Joy Horton says:

    Oh, those pics and captions just bring tears to my eyes. SO much love! If love were Lasix – she’d be on overdose!

    I, too, so wish I could come and help you – every day to get a nap for a few hours. I can’t believe how undissheveled your writing is and how clearly you’re thinking on such little sleep. It is so obvious that you are in the Palm of His Hand.

    Continuing to pray for you all . . .

  13. Janelle says:

    Her older siblings provide more than enough stimulation.  The surgery seems more urgent at this time.  We continue to pray.

  14. Shari~hotfudgecustard says:

    Yes, I wonder if the literature stresses early stimulation mainly for families of only one or two kids?  Or to emphasize to a new mom that a baby with Down syndrome CAN learn?

  15. Sandie says:

    From what I’ve seen 1st hand with my own Ds blessing and with my friend, who also has a large family, just being in a large family is plenty of stimulation.  Our babies will never be stuck in an infant seat with no interaction and stimulation.  Their siblings won’t allow it:)
    Just relax and enjoy your sweety, don’t get caught up on what the “experts” say.  We know from reading what the experts say about raising typically developing children that the “experts” don’t know everything, sometimes not much of anything.  You are the expert when it comes to your baby. 

  16. God does give more grace, this is for sure!

  17. Lindsey Binkle says:

    My favorite picture is Big Brother Peter and Verity laying tummy to tummy! How sweet! I also LOVE the photo you put up at the beginning of your last post…she is BEAUTIFUL! And I just can’t get over how Joseph has grown…I can HONESTLY remember when he was Verity’s age! :)

  18. Ruth Einfeld says:

    I totally agree with the other comments – save her energy for eating…she’ll lose just about everything she has learned after surgery for a little while, and as far as strength goes, she’ll be starting at square one after her surgery, so just love on her and use all her energy for loving and eating!  There will be lots of time after she recovers from surgery to work on strengthening and learning…Esther couldn’t even hold her head up while on her tummy until 5 weeks after surgery, but just look at her now!  She learned and got strong so fast once she made it past that first month after her surgery!

  19. Precious pictures!  Verity is so loved!!  I can see the Lord through your writing, such a blessing to read.  I know you must feel so weak, but the Lord is there and shining through.  (((hugs)))

  20. Nancy Palmer says:

    I understand your pain.  We were given a beautiful daughter that was said to have a condition that was incompatible with life.  We researched and found babies and children living with the condition–Alobar HPE.  Even then, some family felt we should terminate her life before she was able to live it.  When she was born in January we gave her every medical chance we could…  Our pastor even remarked that he wouldn’t have done what we did.  (That hurt!)  We enjoyed her sweet spirit for 7 weeks.  49 amazing days of God’s grace.  That was worth the gtube, the trach, and 45 days in the NICU.  We had 4 glorious days as a whole family together–all 10 of us.  God is good!  I am praying that Verity does well with her surgery.  I know sometimes the fear is great and you have to take it minute by minute.  He will carry you when you don’t have the strength yet to walk.  God bless you all!  Verity is a gorgeous gift of His grace.

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