Friday, August 26, 2011

Making Progress Every Day (by Meghan)

Today was a day full of good news! I feel like we've been part of some amazing miracles in the process of bringing these girls into the world.  Every time I see Isabelle struggling and I get sad I think about the fact that at 4 days old she has already skirted death twice. Between the TTTS and the bad doplars at the end of the pregnancy, I feel like we've already had 2 miracles.  What more could we ask for?  But today I felt like the miracles just keep rolling in for these girls. 

First, Sophia and Madelyn started on breast milk yesterday.  For preemies this early and small, digesting can be a difficult task that results in some setbacks, but not for our girls.  They receive 1ml every 6 hours. At this point, they have been given 4 doses of milk. After the 6 hour period passes, the nurses check to make sure the milk was digested.  Each time both girls have been digesting the complete dose.  They're doing so well the doctors are planning to up the frequency and the amount of milk they receive within the next few days.

Isabelle is still on the breathing tube to help keep air out of her perforated bowel.  One positive aspect to this is she doesn't actually need the breathing tube for breathing purposes, which is wonderful.  Also, she is doing much better now than she was before the surgery.  They continue to run labs and x-rays and with each one she seems to be improving.  Today the neonatologist told us he continues to think she just has a spontaneous perforation and not NEC (necretizing entercolitis).   We are keeping our fingers crossed that he's right.   If it is NEC, the worst case scenario would be her bowel would need to be removed and she would need a colostomy bag.  There are many scenarios in between, but the hope is that it is not NEC but actually a spontaneous perforation, which would have no long lasting effects.  The plan is for her to come off of the tube either Tuesday or Wednesday.  They will start the small doses of feeding that Maddy and Sophie are on now and see how it goes.  We won't know if Izzy is in the best case scenario, worst case scenario, or somewhere in between for 1-2 weeks so keep the prayers coming for our itty bitty miracle girl.

Also today, all 3 girls had brain and heart scans done.  The ultrasound on the brain is to check for brain bleeds, very common in preemies, and the heart ultrasound is to see if the ductus closed, which needs to happen in order for them to start oxygenating their own blood.  As I was sitting in the NICU by myself today holding Maddy's hand and talking to her, the neonatologist came up behind me, put his hand on my back, and said, "No brain bleeds."  I started bawling and he hugged me and rubbed my back.  Then we both started laughing about how he told me.  He avoided saying, "So...I received the results from the brain scan..."  He knew in the few seconds it took him to say those words, I would already be crying and worrying and expecting the worse.  Instead the spit it out right away, rapid fire, so all he had to see were tears of joy.  When we went back tonight to hold the girls, he came by to let us know the girls echoes were all normal too.  Each day it feels like magic happens in that NICU!

The neonatologist also took some time to check in with us about the overall progress.  Jeremy told you earlier that he expected the first 24 hours to be a honeymoon period and that the next 72 hours would be critical.  Today he told us we will be at the end of that critical period at 10 am tomorrow - 96 hours post delivery - and he thought all three girls were doing amazingly well.  This doesn't mean we won't have new issues arise or have set backs going forward, but the chances of survival at this point are extremely high.  So, after what I think must have been one of the most complicated pregnancies ever, it is finally safe to say we have 3 beautiful baby girls.  No matter what happens in life now, we are fortunate to have our beautiful miracles thanks to the Lord, great doctors, and lots of prayers and support from friends, family, and our internet followers. :)

Mom and Baby Sophia


Sophia being held tightly by cotton arms


Baby Isabelle recovering from her belly surgery


Uh oh, this kid (Madelyn) is still trying to block me from taking her picture.  Boy, is she in for it!


Our family with Nurse Melissa in the NICU (she's great!)


Proud Mama

5 comments:

  1. i am so happy that they are doing so well!! i am loving all your updates and pictures- the girls are precious!

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  2. Every update brings tears to my eyes. You have such fighters. I love the photos. Thanks for sharing this with us.

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  3. You both are very lucky. Your daughters are beautiful little fighters! Are they... two identical and one fraternal? very nice photos btw, thank you for sharing! (I'm a fellow TTTS mom, I lost both my girls after two laser surgeries :( You can find me on facebook or in all those groups on there.) I look forward to seeing more photos and will pray your girls keep getting better and better!

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  4. Wow, Shannon. I am so sorry to hear about your loss. I know it's a miracle they are here but hearing stories like yours really helps keep in perspective how lucky we really are. Thank you for reminding us. With all the emotions lately I cry just thinking about the what-ifs. Thank you for sharing your story with us. We'll be always connected through our battles with TTTS.

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  5. What beautiful little miracles! It is so great to see them doing so well. I wish you guys an uneventful NICU stay! I am also a fellow TTTS mom, my girls were born at 26wks after 11 amnio reductions (we didn't qualify for surgery).

    Take care!

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