I’d like to get off this rollercoaster, please!

It has been another week of ups and downs.  At the beginning of last week, Nathan was just starting to do better with his breastfeeding.  Because progress had been slow at that point, the attending physician finally conceded that he probably wouldn’t be home in time for Christmas.  Over the next few days, however, Nathan really proved himself at the breast.  He was gaining weight quite well every night as he worked up on his ratio of breastfeeds to NG.  The doctor said that perhaps Nathan would be home for Christmas after all.  A plan was made for him to come home on the morning of Christmas Eve.  He was doing 3:1 breastfeeds to NG and moved to all breastfeeds as of Sunday evening.  However, over the past several days (since about Friday or Saturday), we have noticed that his temperature is a little low.  This is a little unusual given his weight and gestation.  He should be able to maintain his temperature by this age…and he has been doing well at it until now. 

On Sunday night, he only gained 5 grams, but we chalked that up to his body adjusting to the changes in his diet.  His last fortified feed – and last planned gavage feed – was at 9 pm on Sunday night.  He continued to do well with his breastfeeding until yesterday afternoon, when he was quite sleepy at the breast again.  Since then, it has gotten worse.  He has been waking on his own for his feeds, but for his feed at noon today, he was very, very sleepy.  I eventually woke him up enough to get him on the breast for a few minutes, but he only took about 10 mLs (and his full feed is 46 mLs).  So we decided to put the NG back in and to gavage the rest of the feed.  Such a huge step back after him doing so well for several days!

A big piece of the puzzle, and the underlying cause of it (in my opinion) is this:  yesterday morning, they did bloodwork and discovered that his hemoglobin is quite low again.  He is behaving exactly the same way as he did when his hemoglobin was low last time – suddenly changing his nursing habits and acting very sleepy.  So, while some of the nurses say that Nathan is showing us that he is not ready to breastfeed fully, I truly think that it is just because of his low hemoglobin.  He was doing so well.  He was ready to come home!  That is the most frustrating part of all this.  He was so close!!

They will do bloodwork again tomorrow, and if his red blood cell count is not improving on its own, they will have to do another blood transfusion.  The doctor does not want to give me a specific date, but I have a feeling we will be here at least another few days.  We are going to attempt a bottle again because I do not want to set him back from coming home (he needs to have all oral feeds for 48 hours) over Christmas.  He is back at 3:1 breastfeeds right now, anyway, so I suppose it may be after the weekend regardless… Ugh.  I am so frustrated.  God has been so faithful thus far, and I know that He will continue to provide for us and for Nathan, but I am so tired of this place.  I just want to take my sweet baby home!

Please pray that Nathan improves quickly so that he can come home.  Pray for a speedy return to full breastfeeds.  Pray that he will be able to maintain his body temperature.  Thank you for your prayers and for your encouragement.

8 thoughts on “I’d like to get off this rollercoaster, please!

  1. (((HUGS))) Karen! It would’ve been so nice to be home for Christmas this year!

    Praying that Nathan gets to breastfeeding again soon so you can get off this rollercoaster!

    I was just listening to “When the Tears Fall” by the Newsboys – a fitting song as I read your post. Here are a few of the lyrics to encourage you:

    I’ve had questions, without answers
    I’ve known sorrow, I have known pain
    but there’s one thing, that I’ll cling to
    You are faithful, Jesus You’re true

    when hope is lost, I’ll call You Saviour
    when pain surrounds, I’ll call You healer
    when silence falls, You’ll be the song within my heart

    and I will praise You, I will praise You
    when the tears fall, still I will sing to You
    and I will praise You, Jesus praise You
    through the suffering still I will sing

    oh yes, You are good to me
    You’ve always been good to me
    so trustworthy

  2. Love, We will continue to pray for your family during this time of limbo…
    With tons of love ~ Nicci Little & Chris Ashley

  3. We love you Karen & Rob and we are praying for Nathan always. God IS indeed faithful. By the way… I read those lyrics from Amy and I nearly cried. I love that song…

    love always, Marty & Rach

  4. Kare!

    We are praying everyday for little Nathan. May God strengthen you all as you wait on Him. I pray that you will all soon be off this crazy emotional rollercoaster and that all 5 of you will be under one roof!! Thinking and praying for you daily. Hang in there dear friend. We love you all lots.

    amyxo (col & christianxo)

  5. Rob and Karen,
    Just got back from family to read your latest entry. We were so hoping that you’d be reporting that you’re ALL home, and we understand how frustrated you must feel. We’re praying that it will happen very soon. Stay encouraged. God has you and your little miracle firmly in his grasp and later on – in looking back – the extra time will seem minimal when compared to taking your thriving little guy home. In this week of Christmas celebration, we wish you peace and meaningful times with your family – even if it means not all being under the same roof just quite yet.

    Love from the DeRaafs

  6. Rob and Karen

    It is so hard to imagine your family not being together this time of year, but God is faithful and will carry out His best plan for you guys and Nathan. Know that we feel for you, and are praying for you guys and little Nathan. May you find peace and rest this Christmas. And may God’s love surround you.

    Love the Zietsma’s

  7. Blessed Christmas to you all! Praying Nathan will be home soon!
    Love Aunt Ev and Uncle Al

  8. Merry Christmas Ennema’s!! God’s blessing on your journey with Nathan and the waiting that it still to come. I wish you peace for all the turns in the rollercoaster.
    Love Christine

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