Saturday, October 1, 2011

Carving Out A Slice

I can't believe I haven't posted anything in over a week. What in the heck happened to all of my time? Our girls aren't even home yet and I'm already finding it difficult to keep up with the blog. Perhaps it's just that it's the end of the quarter again and this will always be a busy time of the year or, perhaps, it's just the name of the game with our new life.

Sophie, Izzy, and Maddy, if you're reading this, you're probably wondering why I'm making such a big deal out of not having shared your latest triumphs in over a week. You're probably just reading these posts in sequence with no real concept of the amount of time between posts. Well, at this point in your life, in 2011, with all of you still in the NICU and family members and friends clamoring for details, a week without an update seems like an eternity. People are on edge! Especially, your nana. I've had some free time at night between work and sleep, but your mom and I have been spending it with you. In fact, your mom is there ALL of the time. So much in fact that they just let her sleep there when she needs to.



So, everyone else will just have to wait....until now. Now, we have photos of bathtime (Sophia), first feedings (Madelyn), and photos with mom and dad outside of the isolette (Isabelle). There's even a "How-To" bath video starring Sophia. I think the last video was of Sophia, too. This time, dad was giving Maddy a bath and mom was busy holding Isabelle, so there was no one to operate the camera. Hey, I can't do it all! Wait, maybe I can. Don't worry Maddy and Izzy, you'll get your chance at bath stardom.

On to the girls. The one consistent theme with all three of them is how quickly they're putting on weight. Sophia is up to 4 lbs 6 oz, Madelyn is up to 4 lbs 2 oz, and Isabelle is up to 3 lbs.

Miss Isabelle has finally stabilized enough for us to be spending some time with her outside of the isolette.  She's still getting the occasional pain med when she visually appears uncomfortable, but at this point she's going days at a time without them. During the times she's off the pain meds she's alert and awake, which makes spending time with her so much fun!  She's breathing with the cannula and a little higher oxygen than what's in room air, and she's been off of the breathing tube for awhile.  We still need lots of prayers for her, though.

She's doing much better since her surgery.  She's recovering very well and back to her happy, itty-bitty self.  We misunderstood what happened with the perforations in the last surgery, and it turns out that they only cut one of them out.  The other 3 were left in because they were in an important part of the bowel and the doctors wanted to give them a chance to heal to see if they could save that section.  The good news is, as of today, the three remaining perforations have healed.  Yeah!  One small victory for Isabelle!

Although there are so many things going well for her, she's not out of the woods yet.  The doctors have tried trophic feeds with her twice.  These feeds are so small their purpose is to stimulate her digestive system even though there is no caloric value to them.  Unfortunately, Isabelle was not able to tolerate even this small volume of feeding.

Over the last few days the doctors have been doing GI studies to check for obstructions and to try to figure out why her bowel is not processing these tiny feeds.  The good news is they have not found any obstructions.  We're waiting on the results from the second assessment still, but at this point the surgeon feels it will show the same results. Not having obstructions is great news, but it brings us back to asking why she's not tolerating these feeds if there isn't an obstruction. The conclusion seems to be that the bowel does not have motility at this point.  The doctors are hoping that over the next few months, as they try feedings again and again, eventually her bowel will start to work. We need this to happen in order for her to sustain life, so once again we need prayers for her to be strong and make it over this hurdle so she can come home with her sisters.   The hopeful news is that the feedings did eventually move through the bowel.  They just took an extremely long time.  Without eating, her liver is getting damaged also.  All of the damage is reversible if she starts to eat before it progresses too far.

Mom, Dad, and Izzy getting some time out of the incubator



Izzy paying some extra attention to Meg



Miss Madelyn has been making a lot of progress, too. The last time I posted, only Sophia had made her first go with the bottle. At the time of this post, not only has Maddy been working with the bottle, but she's also began breast feeding! It's amazing how tired she gets when she actually has to work for her food. I guess it's pretty easy to just lay their and get more plump through the NG tube. When you actually have to suck for the food, it's apparently pretty darn exhausting.

Maddy at the beginning of her feeding



Maddy at the end of her feeding (with some milk making its escape out of the corner of her mouth)



Maddy is also doing very well outside of her isolette and is thriving in the open air crib. On a more serious note, Maddy had a major "blow out" the other night and we missed it! Apparently, in the middle of her diaper changing, she decided that she wasn't exactly done and decided to make herself more comfortable at her nurse's expense, as well as the cribs' walls.

Maddy and her fuzzy hair after the bath



Last up, is Miss Sophia. She, like her sister, kept her nurse busy (and disgusted) with a room-clearing, crib-changing, bath-inducing poop. Is it unrealistic to think that they'll get this all out of their system before they come home?

She's also doing extremely well with bottle/breast feeding. In fact, just today, she took her entire feeding from the breast (~38 mL). Before she can come home, she has to go five days without an episode from feeding. She also has to be awake during her feeding times and take it completely from the bottle/breast so they can remove the NG tube. She's probably not too far off, but probably still has a couple of weeks to go.

Waaaaaay at the beginning of the post, I mentioned bathtime. Well, she is doing great with her baths, especially with the help of the massive heater over her crib....which we won't have at home. She was a little fussy at times, but she sure looks cute. See for yourselves!







5 comments:

  1. What great updates! So glad to hear so many positive things! Isn't it amazing how their looks can change so quickly? They look more and more like little people than itty bitty preemies already! And my God, they are stinking adorable!! Continued prayers for Isabelle. :)

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  2. Amazing! Your girls are doing so well. They are just getting cuter every day. Praying for Isabelle.

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  3. I can't help but think of the story of the Tortoise and the Hare. Eventually the Tortoise crosses the finish line - first - even if it is very very slow. It is so hard to be patient but I keep reminding myself of the huge mountains Isabelle has had to climb. When I see her look up at Meg I just know in my heart that this child will pull through...in her time and in God's.

    The girls are so pretty and delightful to see. I can't wait until 10/21 when I get to hold them again.

    Love you all, Grandma Jo Anne

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  4. So happy to get the post. I know it was just a week but it seemed like such a long time. I am
    praying hard that Izzy will be able to process her feedings. The pics are great! Love you all, Aunt Mary

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  5. I cant believe how much they have grown! Such great progress :) thanks for the updates...

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