Tuesday, August 21, 2012

Various bits of drama.

Things got interesting after my last blog update.  And by "interesting" I mean Bonnie started throwing up again.  It only lasted a night, but her feeds were stopped (again), and they started her on TPN and lipids for nutrition.  Meanwhile, it got to be really hard to keep an IV in her.  Two nights ago her IV went bad and she ended up missing a dose of morphine because of it.  (She's still on morphine because she's *still* weaning off all her pain meds/sedation from when she was on ECMO.)  Because she's physically dependent on morphine, this did not go well.  Major freak out.  To keep that from happening again, the decision was made to put in a PICC line, which is an IV that goes in further and is more stable than a peripheral IV.  That was yesterday.

Since the second round of vomiting, they've been going up very slowly on her feeds.  Right now she's getting continuous feeds at 17cc/hour.  That's about 2/3 the total volume of milk she was getting before this recent craziness.  We also haven't been able to work on taking a bottle for about a week. Lost time. Super frustrating.

In other news, it has become apparent that Bonnie is having a lot of pain from acid reflux.  She'll be fast asleep and then start crying and get all sad-faced like she's hurting. They checked her gastric (stomach) pH several days ago and ended up increasing her dose of Zantac (which she's been on from day 1).  That may have helped some, but they checked her pH again today because she still seemed to be in pain.  It was around 2 and they like it to be at 5 (lower numbers=higher acidity=ouch), so they added some Prilosec.  Hopefully that'll help.

Also, with all the IV fluids and whatnot, Bonnie has gotten puffy over the last several days.  She's been gaining weight too quickly for it not to be water weight, and her lungs sounded wet.  Soooo to remedy this, she got a dose of Lasix today.  Over the next couple hours, she peed off almost 8 ounces of fluid.  I can't think of a clever analogy to illustrate how much that is, but trust me when I say it's a lot when you only weigh 9 pounds.

Here are some pictures from the past few days.

Henry in a tree.  He was looking at me and doing his "surprised face".

My little monkey.

I love this guy.

Please note the legwarmers.  This is Bonnie's Jane Fonda look.
Hmmm, does something look different?  Something missing, perhaps?
That's right!  No oxygen!

Chillin on an exercise ball with no oxygen.  Occupational therapy is cray-zay.


Zzz...

Please continue to pray for little Bonnie Bee.  She does seem to be feeling better the past couple days, but we really need to get going again on the eating and weaning.  She'll be eleven weeks old in two days.  Time to get on outta here.

7 comments:

  1. No O2! YAY! That is a HUGE step. Go Bonnie! Hopefully the Prilosec helps with the reflux and the vomiting too.

    Henry looks like he has grown sooo much. Can't wait to see him.

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  2. Yay for no oxygen!! Go Bee, go! Sending lots of baby smooches and prayers for a speedy wean and a happy belly. (prevacid is the only thing that worked for Parker, just as an aside)

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  3. Hooray for leg warmers - awesome! Hooray for no oxygen - double-awesome! As for reflux and withdrawal - boooo! Hope you are hanging in there okay, Leslie. I am sure that hanging out with Henry is a spirit-lifter.
    Corinne
    Mama to Samuel, lcdh, Feb1/11
    www.samuelslight.blogspot.com

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  4. First off, those legwarmers are the cutest thing ever! Second, NO O2?!?! That's amazing!!! I'm all teary with happiness for Bonnie and you guys! I'm sorry to hear she's going through a rough patch, but it really sounds like she is in GREAT hands. It seems everyone is very on top of her needs, especially her comfort. That puts a mama's heart at ease. I was wondering if they have her sleeping on a wedge to help with her reflux? Jacob had custom fit ones made by the PT department, and they continued to make them as he grew. Keep up your spirits. Things will get ironed out. :)

    Katy

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  5. Henry is adorable and sometimes our toddlers are what keeps us sane. Yayy for Bonnie to be off oxygen and hopefully she can get her feeding issue resolved. Rooting for you guys to be home soon.

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  6. Love the baby legs (leg warmers). So cute. Henry is getting so big. Hoping and praying that you guys will be home soon. Miss you so much.

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  7. Leslie, your strength is amazing. You always have a smile on your face! I'm so sorry that Bonnie Boo is going through a rough patch. Setbacks are so difficult! We were moved to a different nursery tonight but are still on the 8th floor and will hopefully still run into you. We're also still praying so much for you, Bonnie, and the rest of the family.

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