Sunday, July 27, 2008

Food!

Great news!  They turned off Becca's IV fluids yesterday!  She's totally on milk now!  They pulled the PICC line (as it is an infection risk), but she will still have the feeding tube.  She can't take a bottle yet, both because she can't suck, swallow, and breathe at the same time (a skill they usually develop around 34 weeks) and because there's not a bottle nipple small enough for her tiny mouth!  Soon they will fortify her milk with some extra protein, which will hopefully help resolve the edema (which, apparently, is a normal preemie issue that isn't a problem, as long as it doesn't get bad enough to affect her breathing).

Wednesday, July 23, 2008

Quick thoughts

Becca's doing great and seems to have the pooping thing down now!  She's 4 days away from being on full feeds (meaning all milk and no IV's), and she's gaining weight like a champ!  Last night she was 1 pound, 7 ounces, and she's in a trend of gaining just under an ounce a day - wow!  We also moved over to the Children's Hospital NICU (which is the same level of care, just a different location on the Vandy campus), which is awesome (and includes a private room), but more on the new digs later.  

On an entirely less celebratory note, I'd like to ask you to pray for our friends the Berlin family.  They are members of our church in Louisville, and their 2-year-old son, Henry (but better known as "Buddy"), died in an accident last night.  I can't even begin to imagine what Mark, Tammy, and 4-year-old Greta are going through.  You guys have proven to be a community of prayer, so please make sure to lift them up in this horrible time.  As I've said before, we can't get through tough times without the support of our faith community, both far and near - so let's join together in supporting the Berlins.  Henry's service is Friday.  (You may recognize Tammy's name from the blog comments - she's a part of Becca fan club and a great encourager.)

Thanks, all!

Sunday, July 20, 2008

Stat update

Just wanted to check in and let you guys know that Becca is still doing great!  She's up to 1 pound, 4 ounces (WOW!) and is getting 4.4 cc's of milk every 3 hours - meaning that she's eating almost 1.5 ounces every day!  She's tolerating the feedings well, so they keep bumping her up.  Now she just needs to poop on her own again!  (It always comes back to poop, doesn't it?)  So we're hanging in there - but right now I'm going to sleep!  Thanks for all your support!

Tuesday, July 15, 2008

Becca's runway debut

Not much to say today, but I couldn't wait to get these pictures of Becca up so you could see our fancy girl in her favorite purple dress!  In fact, I'm not even waiting for John (the picture guru), so there's no telling whether I'll get these up properly, but it's worth a shot.  This is the dress that Susan Williams gave Becca at her shower, so that Becca can "be the most stylish girl in the NICU."  It's SO stinking cute on her.  As my mom said, "Every girl deserves pretty clothes in her size," so thanks, Susan!   Enjoy the pictures!

(By the way, they restarted Becca's feedings today.  She's again on 1cc of milk every 3 hours.  Let's hope and pray that she tolerates it well and can bump up on her feeds quickly so she can grow like a weed like I know she wants to!  Also by the way, don't worry about the IV in her head in these pictures.  It looks way scarier than it is.  It's just like the IV's that are normally in her arms or legs, but since most of those spots have been used, they've moved to her scalp, where babies' veins are really easy to get to.  She doesn't seen to notice it any more than the other sites, but I hate to see wires practically coming out of her sweet face.  Even though her TPN feedings go in through her PICC line, she still needs IV's for some of her meds and to receive blood when necessary.)



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Sunday, July 13, 2008

Kangaroo Addendum

I forgot to mention one of the coolest things we learned about kangaroo care.  Apparently, it's essentially been done for a long time in countries that don't have the highly developed NICU's we have.  When a preemie is born in a developing country, they often use kangaroo care to keep them warm, and their life depends on it.  Often, the babies will be passed from person to person, including family members and volunteers.  How cool is that?  In this sense, it literally takes a village to raise a preemie!

Here are some pictures of our kangaroo care:



 



 

 



 

Captain Kangaroo!

Yep, that's my husband: Captain Kangaroo. 

Yesterday we got to start "kangaroo care" with sweet Becca.  Being the mom and all, I got to go first, but John got his turn today.  Hence, the names:  John is now Captain Kangaroo, and Becca is my sweet little Roo.  John does not yet know about his new name.  I thought I'd go public first so that he can't fight it too much.  So all you who have been known (for reasons unknown to me) to call my husband "Little Johnny Trombone," feel free to add this name to your repertoire. 

Apart from being a children's t.v. star from the late '70's, how does one become Captain Kangaroo, you ask?  Here's an explanation of kangaroo care from the March of Dimes website:



"Kangaroo care is the practice of holding your diapered baby on your bare chest (if you're the father) or between your breasts (if you're the mother), with a blanket draped over your baby's back. This skin-to-skin contact benefits both you and your baby. 

You may be a little nervous about trying kangaroo care. If your baby is very small or sick, you may be afraid you'll hurt him. But you won't. Your baby knows your scent, touch and the rhythms of your speech and breathing, and he will enjoy feeling that closeness with you. Kangaroo care can help your baby:


  • Maintain his body warmth

  • Regulate his heart and breathing rates

  • Gain weight

  • Spend more time in deep sleep

  • Spend more time being quiet and alert and less time crying

  • Have a better chance of successful breastfeeding (kangaroo care can improve the mother's breastmilk production)


Kangaroo care has emotional benefits for you, too. It builds your confidence as you provide intimate care that can improve your baby's health and well being. You are giving something special to your baby that only you can give. By holding your baby skin-to-skin, you will feel the experience of new parenthood and closeness to your baby. Kangaroo care is healing in many ways, for both you and your baby.

Ask your NICU staff about its policy on kangaroo care. Some NICUs postpone kangaroo care until the infant is medically stable, while others use it from birth onward. Kangaroo care is safe and beneficial, even if your baby is connected to machines. Whatever your situation, kangaroo care is a precious way to be close to your baby. You will cherish this time.

Resource
Kangaroo Care: The Best You Can Do to Help Your Preterm Infant, by Susan M. Luddington-Hoe and Susan K. Golant (Bantam Books, 1993). "

Essentially, then, we got to hold Becca for the first time this weekend!  It was so crazy and wonderful and slightly awkward.  Since she can't maintain her own body temperature, we have to be really quick when moving her from her isolette to her "pouch" under the blankets, gown, etc. on our chests.  You basically get her cuddled in there and don't move her.  We each got to hold her like that for a little more than an hour.  She's still got all her machines and leads hooked up to her, so you've got wires hanging everywhere, and it's hard to even see her just beneath your chin, but you could feel her squirming!  John asked what it felt like yesterday, and the best analogy I could come up with is that it felt like holding a hamster in your hand.  And, truth be told, Becca's really not all that much bigger than a hamster.  She's definitely smaller than your average Guinea pig.  But she's as slobbery as a kid with a candy apple!  She left quite the little slobber pile on my chest when she was done.  And she seems to be great keeping her body temperature up.  She appears to take after her sister, Sasha, whose average body temp while sleeping is approximately 650 degrees.  She was a hot little tamale!

She's not as little as she used to be, though!  This week she hit a major milestone - 1 POUND!  Last night she even weighed in at 500 grams (just over 17 ounces).  If you remember from previous entries, 500 grams was the magic number we were hoping and praying she'd get to before she was born.  According to all the experts, she needed to be 500 grams in order to have a chance at living - in order to be "viable."  Of course, these experts had never met Becca or the amazing community that surrounds her.  Starting out at only 370 grams, she proved to be far more than viable!  As I've said before, she's quite the amazing little girl, and she's received care that rivals her amazing-ness (or amazingosity?).  I usually think about what a miracle she is - but today I'm struck with what a miracle it all is.  That is, I firmly believe that it has taken the incredible mix of a baby with the strongest will to live I've ever witnessed, a phenomenal staff of nurses, doctors, and therapists at a cutting-edge facility, and the incredible and expansive support system that can only be called the body of Christ.  I know neither we nor Becca could have made it this far without each other and without you.  So, again, thanks for all your support.  Keep those miraculous thoughts coming! 

As for an update on her physical condition - Becca's holding strong, but her infection does seem to be lingering in her PICC line, so they are thinking about removing it.  Thus far, they've decided not to because removing it (and eventually replacing it in a few days) would be tough on her, so I think they are basically holding out and hoping that it clears up soon.  She's way better than she was a few days ago, so I'm hoping that a few more days of antibiotics will take care of the problem.  Unfortunately, though, they are going to wait to resume feedings until she's finished her antibiotics.  The infection has caused an ilius (which I think is basically a blockage in her intestines, but I'm really unclear on this point) that makes them hesitant to put her back on the milk, but they think it will likely resolve itself as the infection clears up.  But all in all, she's doing great...and so are we, now that we've finally gotten to hold our baby girl!

Tuesday, July 8, 2008

Bump in the road

Hey, guys!  

Again, this will need to be short because I've only got 15 minutes before shift change to see sweet Becca.  (We aren't allowed to  visit during shift change so that the nurses can give report, etc.)  Becca's had a rough day or so.  She started looking really puny last night, and some of her indicators of infection were looking suspicious (including one that they are looking at as a part of a study - one of the advantages of being in a cutting-edge research hospital), so they started her on some antibiotics.  The kicker in making the decision whether or not to give her the meds (because they carry some risks) really seemed to be the fact that she just wasn't acting like Becca - no flailing, no stretching, so funny faces...I swear last night she just laid there and looked at me as if to say, "I don't feel good, Mama."  It was so pitiful.  So it looks like we're dealing with our first complication.  The good news, though, is that she is already looking better, and they were able to avoid putting her back on the ventilator (which they often have to do when they get sick just because it takes so much effort to breathe, and who wants to work like that when they are sick?).  Also good news (in a way) is that they don't think this infection is NEC, which stands for something long and technical, but refers to a dangerous infection related to the feedings.  NEC is really bad news and can lead to a perforation in the bowels, which means immediate surgery.  So we're really glad that if she is going to have an infection, it's not NEC.  It may be something with her PICC line, which would be unfortunate b/c they'd likely have to remove it and replace it after a few days (which is difficult and a bit dangerous), but it may just be something in her blood.  Anyway you slice it, it's a bit scary, but she does seem to be bouncing back already.  They have stopped her feeds indefinitely, again because it's just another activity that takes up energy that she just doesn't have right now.  She needs all that energy for getting better - and for flailing around like the little champ she is!  She'll continue to get her nourishment through her IV's, and once the infection clears up, they'll start her back on tiny amounts of milk again.  Let's just hope that it happens soon!

Thursday, July 3, 2008

Since you asked...

I feel a little funny posting this, but since so many of you have asked what you can do to help, I thought I'd just put this out there.  What we seem to need the most these days are gas cards.  With gas prices the way they are and having a 40-mile commute (each way) to the hospital, John has figured out that it costs us $15 for each trip into town to see sweet Becca.  Of course, she's totally worth it, but it's adding up!  Really, Becca won't need baby clothes, toys, or equipment for quite some time, so if you want to skip those darling pink dresses and send gift cards to Shell, Mapco, or BP, it would help our family a lot.  We'll let you know when she's ready for those ridiculously adorable baby girl clothes (I'm looking forward to those days!), but for now, she's rockin' out in her tiny diaper.  Sorry for the, um, forward nature of this post, but what else do you expect from me?  :)

Wednesday, July 2, 2008

A Few more pictures

John here.  Becca looks much different already from the day she was born.  Here are a few of my favorite pictures:



 



 



 



 



I could teach you - but I'd have to charge!

Life is crazy these days.

Like most new parents, our days are structured around feedings (and, no, I'm not talking about feeding my dear husband).  Those of you who have kids know that when baby cries their hungry cry, all else has to stop until baby is happily fed.  Our schedule is a little different in that we simply wait for the alarm to go off.  Every three hours.  Without fail.  (During the day, the alarm is often in John's head.)  Every three hours, I get hooked up to the top of the line, hospital-grade, mama jama Medela Symphony pump and, um, meditate for 20 minutes until it's John's turn to take over (by washing the bottles, of course).  Each session takes about 30 minutes.  I'll do the math for you - that means we spend 28 hours a week pumping.  I'm reminded why I'm only going to be working part-time.  Sheesh.  Remember, too, that we live an hour from the hospital (if traffic is kind), so we really have to plan our day around being near a pump at the right time. 

Mind you, I know it's exactly what Becca needs (or, more accurately, what she will need), so I don't mind doing it.  It's just not exactly the intimate, mother-infant bonding experience that I had imagined.  There's that massive billboard on U.S. 60 in Ashland that shows the plump baby falling asleep in her mother's arm, looking cozy - and then there's me (and the other NICU moms), hooked up to the slightly more aesthetically pleasing human version of the cow milking equipment.  Good times. 

But -

The whole pumping experience is starting to take on new meaning now - because BECCA IS FINALLY EATING!  Mind you, we're using the term "eating" here loosely.  What I really mean is that every 6 hours, they give her 1 cc (about 5 drops) of milk through a tube in her mouth that empties directly into her stomach.  That way we're saving her the stress of trying to learn to suck, swallow, and breath all at the same time (which is really complicated, when you think about it!).  She likely won't develop that skill for another several weeks (usually around 34 weeks gestation, I believe - she's now at 29).  By giving her such a small amount ("trophic" is the medical adjective), they are really just testing her digestive system out, seeing if it's ready to take enough food to actually nourish her.  In the meantime, she's getting the majority of her nutrition from her IV feeds.  Hopefully, she'll continue to tolerate the feedings well, and they will be able to increase the amount of milk and decrease her other fluids.  Once she's fully on milk, I'm convinced that she's just going to grow like a weed. 

We really won't know how she's doing with the feedings, though, for a few more days.  By the end of the weekend (or early next week), we should have a decent idea of how she's tolerating them.  They are watching closely for blood in her stool, a large amount of "residuals" (that is, the milk left in her tummy when it's time for her next feeding), or an increase in the size or appearance of her belly.  Her tummy has been measuring 16 cm for the past couple of days, but today it popped up to 17 cm (where she had been most of last week).   The doctors seem to think that she's just got to poop, though, so they aren't too worried.  Now she just needs to poop to prove them right.  To this end, we put her Winnie the Pooh blanket (that Katy and Jeannie got her) underneath her this afternoon.  I hear there is a direct correlation between baby poop and exposure to Winnie the Pooh, so we're checking it out.  This is a research hospital, after all.

So that's our next big hurdle.  I'll spare you the run-down on her stats, but she's doing great on her breathing (sometimes even just breathing room air with a little pressure behind it), and she seems to have grown a little bit, though her weights are always skewed depending on whether or not she received blood products that particular day.  It's so easy to get lost in all her numbers for this and that, and I try not to focus on them too much, but when you are just waiting for her to grow and hoping nothing happens, it's like the numbers are the only thing to give you any traction.  How else do you measure from one day to the next?  (Okay, Rent fans, stop singing.)  But the numbers will also make you crazy, because even in a baby as relatively stable as Becca (isn't that great to read?  She's relatively stable!), they fluctuate like crazy.  So we try to take it a day at a time and look at her overall picture.  And, overall, she's about the most adorable little girl I've ever seen.

I'd love to write more - but it's time to pump.  Again.  Becca needs her supper!  :)

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