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Wednesday, September 22, 2010

A Moment In Time

Just as soon as I proudly express how well Jonah was making progress in the last week...the home nurse had to show up with her scale and burst our cheery little bubble. According to that menacing scale (my nemesis), Jonah did not gain any weight- not even an ounce- from his previous weight taken 5 days earlier. Rob and I (as well as our families) all look at him and each other absolutely baffled. How can this be? He looks as if he is gaining weight...feels as if he is gaining weight...but unfortunately, nothing.

Yesterday also marked one month since Jonah's NG tube had been placed and that meant a new one needed to be put down. Yesterday just so happened to be Rob's birthday and I kept thinking the perfect gift would be to see his son just chugging away on his bottle with no NG tube in sight. However, this gift could not be given...per se. Rob worked from home yesterday and we woke up with big plans. We were going to take the tube out and the magic was going to happen ;-) Well, that wasn't exactly how the day unfolded. I took out Jonah's NG to see his adorable face free of any tape or tube for the first time since he was delivered. We cleaned him up, got him dressed, and set our sights on bottle mania. Jonah, on the other hand, quickly told us he just wasn't ready yet. It's not as if he didn't take to the bottle at all, he just didn't take to it like we had hoped with the tube removed from the back of his nose and throat. He took about an ounce at a time which is exactly what he had excited us with at the end of last week. No more, no less.We had read so many blogs and websites, talked with many other families with stories of children who had that "light bulb" go on as soon as the NG came out. That silly tube can be the source of such irritation...reflux, congestion, swallowing difficulties, etc. We really thought that Jonah might have a better chance at the bottle without this nuisance. At the end of the day, we had to put the NG back down and rev up the pump for more continuous feeds- although, we are doing more bolus feeds again to keep practicing with the bottle:)

Rob did have a great gift though. We both did! It was a wonderful day to celebrate a moment in time without the only evidence that our little baby had anything wrong with him at all. It was so liberating for all of us to walk around the house, to walk around the block without all the "extras". We didn't hear Jonah try to cough the tube out or throw up (of course, he didn't have much in his belly to throw up) and instead we played, took pictures and reflected on how far we have come!! We have received many gifts to celebrate and this moment will soon turn into a loving memory as we delight in  all that is to come.
Happy Birthday to the love of my life!!! 

...Quick question to other mom's of heart babies...have you seen any of these children actually gain weight on breast milk alone? Or is this just a pipe dream of mine?? First, I am a naturalist at heart, breast milk has to be the best, right?. Second, I am afraid to start experimenting with formula after formula and all the aches and pains of testing each...


  1. 1st - Happy Birthday Rob!!! So glad that you and Stacie had the day to enjoy Jonah without the tube as a family.

    As for the breast milk fortified and not fortified post Norwood Olivia gained really well at first on the fortified, but then she had all her tummy issues and we stopped the fortifying. So she gained on her own with just breast milk and then from weeks 12-16 she barely gained anything at all on breast milk alone and then maybe an ounce or two when we fortified right before the Glenn.

    See what kind of info or feedback you get at clinic during your next appointment. Maybe doing some bolus feeds with the pump would be good training to get ready for the bottle?

    You guys know what's best for Jonah, just trust your insticts.


  2. Jonah is adorable! I'm so glad to read that the three of you got to spend some time together without the tubes. As I've said before, you two are amazing parents. There are many of us out here silently keeping tabs on your family and praying for you daily.

  3. love the pictures of the cute little man! he sure looks like his daddy! anika sure loves those beautiful eyes! hoping each day gets better and you get to start seeing some chunk on those legs soon.

    lots of love!
    erica and anika

    ps- emailed you some thoughts on formula from my experiences

  4. Hi Rob and Stacie,
    Happy belated birthday Rob!
    I have enjoyed reading your blog since Jonah's birth. Thank you for taking the time to keep us updated.
    God has blessed Tony and me with healthy children, and both were premature. Rich came 7 weeks early weighing in at 5 pounds 2 ounces, and Anna Grace came 6 weeks early weighing in at 5 pounds 3 ounces.
    When we left the hospital both only weighed about 4 pounds 5 ounces (their legs were SO skinny). I did supplement breastfeeding with formula for a few days for Rich, but then I felt it was o.k. to just breastfeed. I never gave Anna Grace any formula except for when I had a nurse help me feed her after she was born. It did seem to take a very long time for my babies to gain weight, but they did gain slowly. I am hoping this will encourage you both. Of course do what is best for Jonah, but I do think he will gain weight on breastmilk alone--it will just take time. I think it would be hard to gain any weight since he has had tummy problems.
    Jonah is a beautiful baby--we pray for you all, and we will keep on praying.
    Love, Lori Hull

  5. Stacie, unfortunately I don't have the hardware for the breastfeeding info you want. Sadly, I'm a dud.

    I do know that after watching three kids grow over the span of 14 years it's evident every child, big or small, grows at their own pace. They're running on an invisible clock, set by the good Lord. It moves like the wind. We can't see the hands or hear the ticking, but we know it's moving. Jonah will grow, but on his own individually set pace. Custom made for Jonah.

    I deplore reasoning by analogy. It's faulty, but lessons can be learned from it. On beautiful days I sometimes sit at my work desk and watch the clock. I know. I'm a fool. But regardless of how much or how little I watch the time painfully, slowly, halting progress it always get to 4:30. Jonah will get to his 4:30, but it'll probably be when you're not watching the clock.

    He's got everything a growing boy need including a Boxer shaped bean bag chair. So cool. He'll get to 4:30.

    Take care and know we're pulling for all of you. He's beautiful.


    David Chadwick

  6. I’ve tried all sorts of coughing syrups, believe me, but none of them helps. Even though Nin Jiom Pei Pa Koa does not eliminates the cough I like to stick to this chinese syrup I’ve been taking since I was a kid: Nin Jiom Pei Pa Koa. My grandfather is chinese, so I guess my mom got the advice from him. I was really surprised when I found that chinese market selling it here in Belgium. It does have a refreshing, soothing, sweetening effect…as long as it lasts…then back to coughing mode.

  7. Hi! Just thought I'd share that Chase only had fortified breast milk while he was in the hospital for his birth/Norwood. Once we brought him home, he was on straight breast milk and gained wonderfully. We did have to supplement with the standard Enfamil or Similac just because my supply couldn't quite keep up with my hungry little guy, but overall he did WONDERFULLY on straight breast milk. Hope that encourages you as you make decisions for your little Jonah. Definitely go with your instincts... moms always know best (especially heart mamas!!!).

    Heart hugs!

    P.S. Could he BE any cuter?! My goodness!!! :)