Keeping Us On Our Toes (by Meghan)

What a day!  We finally got through the surgery that has been looming on the horizon for weeks. I feel so relieved to be on the other side and finally have some answers.  Unfortunately, with the answers came more questions.  As you know, nothing with Isabelle is typical, so why should that change now :)

Let’s start with the general update of today’s surgery.  They took her back to surgery at 4:45 pm and she was done by 5:45, which was much quicker than we expected.  The doctors found four perforations close together and removed them.  The first part of the bowel before the resection was brought to the skin and connected to a colostomy bag.  The other section was also brought to the skin.  That part will just hang out and heal as long as the bag is in.  In a few weeks or a month or so, they’ll go back in and reattach the two parts of the bowel so she can start to have more normal bowel functions.  There will, of course, be some issues with feeding and passing stools and getting it back to normal function, but she will slowly get better and better with time.

Here’s the great news:

1. They are confident they found and removed all the problem areas, so she can finally start the healing process.
2. She looks so much better!  I was prepared to start bawling when I saw her, but I was actually overcome with joy.  Her tummy was so stretched out prior to surgery.  It looked very swollen and painful.  Post-surgery it looks much more normal and less painful.  The doctor said she should have the ventilator off in a few days and start eating soon after that.  We’re finally on the road to recovery for her after spending her first 3 weeks of life not knowing what was going on and just waiting and waiting. Being on this side of it feels much better.
3. They are sure it was not NEC.  They found no sign of infection and the perforations have nothing to do with NEC.  Yeah!  One small victory for our Izzy! 

Here is the scary part and the reason Izzy’s still keeping us on our toes and needing lots more prayers: The surgeon feels since it is not NEC, we have to ask ourselves why this happened.   He feels there is a high chance that she could have cystic fibrosis.   The stat he shared is 50/50.  The scariest part of all this and the most hopeful part about it is that CF is a genetic disease that is in your DNA.  Therefore, if Izzy has it, so does Sophie since they are identical twins with identical DNA.  The good news is he thinks Sophie would be showing some signs of being sick, specifically having some bowel issues, and she’s not.  She seems to be as healthy as can be, on full feeds, and having no problems with digestion whatsoever.  It’s so scary to think that our healthy one we have worried about the least could be very sick too, but I’m staying with the positive outlook.  Let’s keep thinking Sophie’s showing us signs that really they are both healthy without CF.  Of course, if they have it we will love them and get them on track for early intervention from the beginning, but we can still have hope of avoiding this issue like we did the NEC.

I asked the doctor if he knew we had TTTS and had fetal surgery, of which he was not aware.  Then I shared that an ultrasound post-surgery showed blood in Isabelle’s bowel.  At that time the doctors and we were so excited to see all babies having heart beats, he told us not to worry about it.  I asked the surgeon if he thought this could be a side effect from that surgery and not related to CF and he said that was a possibility.  He’s still sticking to our 50/50 odds though, so we’ll just have to wait and see.

Here’s the plan of action for the next few weeks:

1. The surgeon and neonatologist will be monitoring her closely to make sure she’s recovering ok from the surgery and to decide when to start taking the next steps forward – starting gavage feedings and taking out the breathing tube.
2. They will test her DNA for a variety of types of CF.  I was tested pre-pregnancy and I am not a carrier so she won’t have the most common type of CF.   The surgeon explained to us that there are a variety of strands that I may not have been tested for that they’ll look at now.  If all of these tests come back negative, there is still a small chance (about 10%) that she would have a rare form of CF that they cannot test for.  The tests will be back in a few weeks, so this is the focus of our new prayers for our girls, sweet Sophie and Isabelle.

Either way, we’ll have a better prognosis in a few weeks.  Of course, we’ll keep you posted as we hear new information from the wonderful doctors at Edward.  Here’s a picture we took of Isabelle right after surgery. 

Thanks everyone for your thoughts and prayers.  I’m still amazed at how FB has become such a large part of our lives as we battle onward.  Each time I see the names in my email of people who are commenting it makes me smile.  You do so much more for us than you know.  It’s so nice to know there are so many people on this journey with us.  We appreciate that more than we can say.  It is so nice to be able to glance at our phones and so frequently have more positive, kind, inspiring thoughts from friends and family.  Thank you so much!

Also this week we need to thank Aunt Mary and Charlie.  They cooked all kinds of food and brought it over to us, the first home cooked meals we’ve had at home since our NICU rollercoaster started.  They also spent all day waiting for the surgery and hung out at the hospital with us while we waited.  It was nice to have someone with whom to talk and hang out.   Thank you!

Also this week, Jeremy’s friends sent us wonderful gifts. I know I need to send all of you thank you cards, but until I get your addresses thank you so much for the amazing gifts all of you sent.  You went way beyond.  Thank you so much for your thoughtfulness.

Kelly, thank you so much for the beautiful birthstone necklace and cooking us dinner at your house.  You’re a much better cook than I am and Steve’s a much better griller than Jeremy is.  It was wonderful to have a home cooked meal with you and your family.  Thank you!