10/10/19

Some months ago, while I was still pregnant, when I had all the time in the world.... I was available to tag along with my friend and her twin baby girls to a regular check-up with their pediatrician.  I asked that doctor at the time what his experience was with babies with trisomy 18... He talked about not having a baby with trisomy 18 in his care, and some of the expected outcomes for her after being born, and then left the room.  He came back in to make sure that I did know though that if things worked out, that he and his office would be happy to take care of my baby.
While in Omaha, our case manager needed us to choose a pediatrician so that she could send over info about Annelise.  I contacted a friend in Long Beach who has a baby girl with Trisomy 13, to find out who she sees, and was happy to choose her recommendation as our pediatrician.  Today, we had our first appointment, and as GPS is leading me to our destination, we parked at the same office as my friend's pediatrician... then got closer and up the elevator to the same doctors office as my friend!.... Then down the hall and into the room right next to the one I had been in with the girls so many months ago... and as you may have guessed, the same pediatrician walks in our room to take a look at his newest patient, Annelise! He remembered our first meeting in detail, and I couldn't be happier to have him on our team.  Such a special connection, reminding me that God has gone before us in this journey, and knew about this moment way back then, when we still had no idea what the outcome of our pregnancy would be. If you know me, you know that this kind of connectedness is so meaningful. And God does know me❤️

An update on our nursing situation:
The night nurse that came to us so easily didn't work out for our family.  As of this afternoon, we heard that we have a new nurse available to start in the day next Tuesday, just for Tuesdays. Then we got another call that they found a night nurse for us for Mon-Fridays, starting tonight!  Praying that this will be a person whom we can trust our most precious girl with.

4 months old!  We ended the 6 weeks of formula today and started again with breast milk!  One positive outcome of the intensity of this journey is that we are more quickly reliant on God's timing, because we have had so many learning opportunities to see Him show up outside my expectations, and then blow my expectations away.  I still have my own agenda... I'd like this night nurse to be an overachieving phenom LVN, and if it were up to me I'd add to the list no trace of chylothorax causing any fluid to build up again around Annelise's lungs due to starting on full fat milk again. Since that's out of my control, and fully within God's control, I'm confident that His way is the best way for us. The best case scenario is that no extra fluid will show up as a result of resuming regular feeding.  Worst case is that she will get another pleural effusion, have to stop eating for a week... Which would probably mean getting admitted to the hospital again.
Clearly you can guess which way we are praying for!

Kevin and I are so lucky to have had so many of our friends jump on a meal train and so generously bless us with healthy meals and snacks and special delivery groceries to the door. It has made our lives so much better to not have to think about our food! We are so grateful. ❤️❤️❤️

I'lleave you with some photos from today!