Saturday, September 17, 2011

The Signs Are Trending Up

I feel like I just posted the video of Miss Sophia's "blow-out."  Alas, three days have already passed.  It's amazing how the days seemingly run together and how difficult it's becoming to associate the smaller details with the correct day.  I'm sure it will only get worse with more memories and more days.  It's a good thing we have this blog to keep us straight :)

We began the day early with our minds set on scoring some major finds at one of the many multiples resale events that just happened to all fall on the same day.  Honestly, we were a little disappointed with the lack of interesting selection.  They definitely weren't worth sacrificing our one day to sleep in.  I have to admit, I think we probably missed out on some really good triplet stuff by not going to the "sales preview" on Friday night.  Meg mentioned it to me, but when I didn't see it mentioned on the information post, I thought she was just making stuff up.  I guess I should listen to my wife a little more ;-)  The most exciting part about the whole outing this morning was that we finally got to meet a triplet mom, in person, who we've "known" on facebook for the last several months.  Shelli, if you're reading this, it was great to finally meet you and we definitely plan on taking you up on your offer to visit with your family so we can get a glimpse into our future, especially if we go for a bonus baby!

So, we have some good news to share about the girls!  First, they're all growing like a weed in a bare spot in your yard.  Sophia is now 3 lbs 7 oz, Madelyn weighs 3 lbs 4 oz, and Isabelle weighs 2 lbs 3 oz.  If you recall, Sophia came out weighing 2 lbs 15 oz, Madelyn weighed 2 lbs 8 oz, and Isabelle weighed a mere 1 lb 7 oz.  Those are net gains of 8 oz, 12 oz, and 12 oz, respectively.




Izzy had her breathing tube removed on Friday and is doing extremely well with the nasal cannula.  I'm not sure if the fact that she's still due for at least one more surgery--to re-unite both sides of her intestines--will play a role in their breathing plan for her, but, for now, I can't see why she wouldn't be completely on room air within the week.

Her stomach looked quite red today and is still pretty swollen from the surgery.  My mom reminded me today that, just a week ago, they had her entire intestinal tract outside of her belly so they could check for perforations and that it's probably still a little irritated.  While we were there this afternoon, we also watched Nurse Erin change Izzy's colostomy bag.  When she removed the bag from the skin, you could actually see her intestine sticking through the incision in her belly.  I've never seen anything like it.  My first thought was, "Wow, that looks horrible!"  Then I realized how amazing it was that she was just lying there, looking at me with her eyes wide open, all the while sucking away on her pacifier like she didn't have a care in the world.  What a miracle!

To that point, there probably hasn't been a day that's gone by, since they took their first breaths of air, that I haven't thought about how close we came to losing all three of them.  It was just a little over 14 weeks ago when we were told that all of our precious babies were too sick to save.

Now, I see them growing and thriving in their isolettes and am so thankful that I've been able to spend so much time with them.  Each day, they look bigger and more healthy than the day before.  I can't wait to see what they look like tomorrow!

The last piece of potentially really good news is that we finally met with Dr. Sharma today.  He works at Rush Medical Center in Chicago, which is one of the top three nationally accredited institutions for their work on, and treatment of, Cystic Fibrosis.  The best part of what we heard today was that there is about a 90% chance that we'll never have to visit his office.  After looking at our entire case, and taking into consideration the genetic testing that Meg had done during the IVF process to test for CF, as well as some post-TTTS surgery ultrasound observations, and the fact that Sophia is doing extremely well and isn't showing any signs that a baby her age with CF might show, he told us that he's about 90% sure that Izzy and Sophie don't have CF, without even having the gene testing done (sorry for the run on sentence).  He said he's been proven wrong before, so we'll still need to wait for the results of the test.  We were pretty excited by that news, but with Izzy, she's pretty much made every long-shot bet out there, so we're still going to proceed with the tests.

First, they'll check Sophia's stool to see if an important enzyme is present.  Second, they'll do the blood gene test on Isabelle which should test for 99% of the known CF gene mutations.  Last, when she's about three months old (adjusted), Dr. Sharma will still want her to do the sweat test. 

What also seemed promising is the fact that the most common mutations they test for are the ones that seem to have the greatest impact on one's quality of life.  There are many "mild" mutations that could make someone test positive, yet would have limited or almost no impact on their daily lives.  Again, we're praying a ton, keeping our thoughts positive, and our fingers crossed!

Today's Random Nugget of Interest:  We heard today from another parent in the NICU that the average costs, per child, over a 90-day period in the NICU, was $2.5M.  If you work the numbers, that means our babies are costing $2.5M/mo combined!  Thank you Unit.ed Hea.lthcare.


  1. check out the hair on their heads!

  2. Your girls are doing amazing!! Thanks for sharing your journey with us.

  3. when rachel was born she lost a lot of blood and needed transfusions. that messed up her testing and she had the sweat test done. it's an easy thing...just bring something to do while you wait for the legs to "warm". :)

  4. such encouraging news! I'll keep those prayers going, we have a great prayer group here in FL praying for your precious girls!

  5. Just wanted to drop you a note to say I've been thinking about you and hoping and praying for your girls. You guys have been through so much, but the little ladies are fighters! And also so beautiful. I'm sitting in the hospital at almost 30 weeks with my triplets and it doesn't look like I have much more time. We had a scare with TTTS and one of our identicals has flow issues as well. It helps so much to know others have survived this. So hang in there and you will remain in my thoughts and prayers!