June 2, 2011

Oh, Boobies

About 90% of my day now revolves around boobies.  My oh my.  Here's more than you probably want to know!

Clara has been nursing well for the past couple of weeks using a nipple shield.  It helps her latch on and she sucks great.  Yesterday, the lactation consultant came and watched her nurse again.  We discovered that while she appears to be nursing really well, she's not actually getting a lot of milk.  This is clearly not due to my supply which is out of control, so it has something to do with the way that she is sucking and swallowing.  She's a smart baby.  She's trying to protect her airway and not choke or aspirate.  She's had a lot of trauma to her neck and throat during her life and she's just being very careful and cautious.  That's probably why she likes the breast so much, but doesn't have any interest in the bottle.  She is able to control the breast better.  So even though she's been seeming to nurse well for the past couple of weeks, she's not getting as much as we thought.  She's careful how she sucks to not get too much milk.  Because I've got such a big supply, she's still getting a good bit - enough to stay hydrated and healthy and happy, but not enough to gain weight and thrive.  Today, we have made a few adjustments. We are trying to nurse for shorter periods of time (20 minutes or so), but more often (every two hours).  We've gotten a different size nipple shield to change the way that she latches on.  And we've added this bizarre contraption called a supplemental nursing feeder.  I put hindmilk that I've pumped into the feeder and we supplement it with milk fortifier and lipids (fats) to give it more calories.  Then, as she's nursing, she's also getting this extra milk.  Sounds like a lot of trouble, doesn't it?  It is.

Since Clara still lost weight last night  (down about 35 grams) they were going to put the NG tube back in today and resume her tube feedings.  I asked at rounds for one more 24 hour extension (I made it through college never once asking for an extension, but I've gotten three this week) to see how she will do with these adjustments.  Honestly, I think it's unlikely that she will gain the weight we need to see, but I want to be sure that we've done everything we can before putting a tube back in.  She is getting better and stronger every day, but may just need more time.  If we do have to put the NG tube back in over the weekend, it will still be just to supplement my breastfeeding.  She might get two ounces from me and then a third ounce through the tube at each feeding.  If we can establish a feeding plan that works, even one with a feeding tube, we'll be able to go home.  After much deliberation and many conversations, Robert and I have decided that if she does require a feeding tube to go home that we will have a G-tube surgically placed in her stomach (instead of the NG tube that goes in her nose).  This is more invasive, but also much safer and more stable.  She will be able to keep it as long as she needs it while she continues to build her energy and confidence with oral feeds.  An NG tube runs a risk of aspiration and is also an intrusion on her throat and airway which we want to keep open and clear. 

There was a time when we thought it would be inevitable that Clara would go home on both oxygen and a feeding tube.  We were very encouraged by her feeding progress and obviously hopeful that we might not have to go home with any tubes at all.  But we are still so thankful that she's breathing well on room air and that she is learning to eat.  If the worst thing that happens is we have to have one more surgery for this G-tube and go home with it for a few weeks or months until she learns and gets stronger, that is not a bad problem to have.

I have some great photos of her smiling the past few days.  She's very happy to be tube-free, too.  But I'll have to upload them later.  I'm just squeezing in this update between feedings.  Nursing every two hours is nearly around the clock (nursing - 25 minutes, burping -10, pumping- 15, one hour off and do it again!).   I'm so thankful that Clara is such a sweet, happy, good natured baby and that she fusses very little.  We're both trying to rest some in that one hour off.

Thank you so much for your continued prayers.  I was so frustrated and disappointed yesterday morning, but feel a peace today about where we're going.  I'm still hopeful that maybe Clara will gain some weight today, but if she doesn't, I'm also okay with the alternative plan.  We just want what is best for her.  We appreciate you praying us through this last step towards home.  I think we'll be there in the next week or so, one way or another.


  1. Remember the saying ... "slow and steady wins the race". You guys ARE winning so relax and take each day as a positive step in the HOME direction.
    Please assure Penelope's parents that many, many prayers are being said for them to get where YOU guys are now.

  2. That is good news, Chrissy. All of it. We continue to pray for Clara and for you. May your whole self find rest and renewal in whatever forms it can come during this intense feeding ritual.
    Melissa W.

  3. Oooohhh boobies! Hope you are getting some rest today in between nursing sessions. I know when I was on my "I'm going to make it work" kick it was exhausting. On the bright side, you're doing EVERYTHING you can to nourish your little baby, and burning calories too. So keep it up, keep us updated when you can and know that we are praying for Clara (and all of you!) and little Penelope too! We love you!!!

  4. You don't know me...I see your blogs through Jeanne Share's facebook page. But I wanted you to know how much I have been thinking of Clara and your family. I have a 4-month-old little girl, and every time I read about Clara, I can't help but hug my little girl closer. It is so good to hear about the remarkable progress she has made. I will continue to keep ya'll in my prayers.

  5. My prayer was if Clara was ready, she would go, and if not, she would stay...God is good ~ thankful the lac. consultant is there and is full of knowledge! Love to you, Robert, and Baby Cara...Mary Ann & Chuck (he keeps saying, "She is a miracle!")

  6. I have been following your story for quite a while, and just added my blog, so now I can comment.

    I think you are making the best choice regarding the g-tube. My preemie got one placed 2 months ago, at 9 months old. The doctors tried to force us to use the NG at home so that they wouldn't have to do the surgery, and once we placed the NG, she almost completely stopped eating orally, even though she had been on the NG for 7 weeks in the NICU when she was born. The g-tube was very scary for me at first, but now it is the easiest thing and gives her the nutrition she needs while we can work on her oral skills without stressing about it, like we did before.

    I think it is such a blessing that you are able to nurse. My Sweet B wouldn't nurse,so I pumped exclusively for 5 months. It was awful! Anyway, I just wanted to commend you on your g-tube decision if that is how she is to come home. We delayed it by months and ended up stressing ourselves out so much. Placing the NG when she would rip it out just about killed us and her, and it was scary.

    Anyway, my prayers are with you, as always.

  7. Ooooh mickey's (what we call pediatric gtubes) are God's gift to parents. It will be hard/tricky at first but then wonderfully easy. Just think how you won't have to battle for the sildenafil every 6 hrs!

  8. Keep up the breast feeding! You're doing a great job! It is hard and complicated but you will conquer this too. What a lucky baby to have such a great mommy!


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