"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Tuesday, June 15, 2010

June 15, 2010

Overall Benjamin's days have been good since our last post, but what he accomplished this weekend was amazing. Ryan and I walked into his bed space on Saturday and were getting ready to get his lines in order to pick him up and we couldn't find the high flow equipment. Benjamin looked the same to us with the cannula in his nose, but we were puzzled. It dawned on us that he must be on the low flow now. Ryan and I caught one of the nurse's attention and said at the same time "is he on the low flow??!!!" Sure enough he was. I don't know if they've seen two more excited parents at that moment. Not only was he on low flow, but they weaned him from 3 liters (on the high flow) to a quarter of a liter. At one point we were watching him because the prongs had fallen out of his nose and he was essentially breathing entirely on his own without support for almost half an hour. However, yesterday he was really working on his breathing (he was hyperventilating a lot). We were afraid he was going to burn more calories, so last night they had increased him to 3/4 of a liter. He's been on 30% oxygen and doing pretty well ever since.

Sunday morning we got a phone call from his nurse telling us that the surgery team put an order in for him to try 5ml of milk in a bottle 3 times a day. She said she would wait for us to get to the hospital so I could give him the bottle. I was so nervous, but it turned out to be a wonderful experience for both of us. He was hesitant at first, but was able to swallow the 5ml in about 25 minutes without any episodes! Unfortunately since Sunday, the bottle feeds haven't been going as smoothly. This morning we tried and he was having brady after brady and then desatting. I guess for a preemie learning how to suck, swallow and breathe can be challenging. At least he did it the first time so we know he can do it again. It will be such a relief when he stops bradying. He's almost 40 weeks (my due date was 6/20) and they've discontinued the caffeine so he should have stopped bradying and desatting by now...

His weight is down to 4 lbs. 3 ozs. This is a concern for us. Breast milk only contains 20 calories per ounce and because he's got such a small amount of bowel and doesn't absorb the normal amount, they've been adding calories to his milk. He's already up to 30 calories and they really don't like to go any higher. We're hoping between the additional calories and the less labored breathing, he'll start to gain weight.

His eye exam that was scheduled for yesterday got pushed back to tomorrow. Hopefully we'll see improvement.

We can't forget to mention that Benjamin also passed his first hearing test this morning! He'll need additional testing as he gets older because he still may experience hearing loss due to the antibiotics he was on as well as the extended vent support he needed. But we think he's a little rock star. He should be by the time he leaves because he's been listening to some pretty awesome tunes. He has Rockabye Baby (Led Zepplin, Green Day, Guns 'n Roses, the Beatles and the Beach Boys) plus Baby Loves Michael Jackson and Baby Loves the 80's. Combine this with the mohawk and he's one cool dude in the NICU.


  1. Your note about rocking tunes in the NICU brings back memories of feeding and rocking Jill during the few weeks she had to stay there. Our song was "Takin Care of Business" by Bachman Turner Overdrive. If you put it on Benjamin's playlist, I am sure he will enjoy it! :)

    I'm so glad to hear your good news. Way to go, Benjamin! Love to you all.

  2. Jackie, that's overall awesome news!!! It brought tears to my eyes to imagine you feeding him his first bottle! He's come such a long way. You and Ryan and Jadyn and Benjamin are an inspiration to me every day! And I knew his due date was coming up, but I couldn't remember exactly when it was.

  3. I continue to read these journals and agonize with you during the struggles and uncertainties and celebrate the joys and accomplishments. Benjamin and the rest of you are solidly in my prayers.

    Reading your journal brings me back to nearly two years ago when I had was able to give Chloe her first bottle feed. Like Ben, she went to town on the first one and either she (or maybe it was me) struggled with the subsequent feedings. Her little tongue would always go on the top-side of the nipple and she'd look like she was sucking away, but she got nothing!

    Thank you for sharing your journey with me. Your courage and strength is inspiring!

    Steve, Grace, & Chloe

  4. Awesome post #? - keep up the good work. Praying works wonders.