Day 12 - Tristan loves his paci

Trayc's mom took the "night hours" so we were able to get another good night sleep. Tristan had a great night also. Trayc's mom said that when she has Tristan at night she reads her Bible, prays with him, sings Jesus Loves Me and then prays for the rest of the night. I am so thankful for a Godly Christian Mother-In-Law . She has not only been a HUGE help to us since we came home from the hospital but she has been a constant emotional support for me every day with her love, her words of encouragement and her words to me from scripture she is reading, it has meant so much to me. She was supposed to be leaving on Monday but we have been trying to talk her and Grandma into staying longer. We just keep praying for snow on top of the mountain (in Tennessee) so they'll have no choice but to stay - from the weather report it looks as though it is already happening!!!!! So, hopefully we'll have them at least until next Wednesday or Thursday. Trayc worked all day today so his mom and I took turns taking care of Tristan and she taught me how to do all of the feeding tube stuff. It's about a 6-step process so I'm "in training". Trayc learned all of it at the hospital but because I had such a difficult delivery and 5-day hospital stay I was not able to learn and since we got home last Friday, I have not been able to walk up and down the stairs (per doctors orders) all day, just once down at night and back up. The excitement for today was that Tristan took a pacifier (aka "paci" per Tanner and Tayden). We are so proud of him, this is such an accomplishment! We have noticed that he turns his head and sucks on his feeding tube all the time so we mentioned it to the geneticist yesterday and he said that we should try a preemie pacifier and a preemie bottle and see if he'd take it. The bottle feeding started off great, he was sucking the nipple without any problem but then we quickly realized he was not swallowing the formula so we used an aspirator and removed the formula from his mouth, therefore we're obviously going to stick to the feeding tube. We knew from research that most Trisomy 18 babies have the ability to suck but not swallow but it was worth trying. We then tried the pacifier and he loved it! He is so cute just sucking away, actually it sounds like he's smacking (By the way, the little doggie in the picture was given to Tristan by his big brothers, Tanner and Tayden. We bought Tanner one when he was born and then he bought Tayden one when he was born, so they bought Tristan one - it's a family tradition!) Tonight my mom and step-dad came over. My mom held Tristan for 2 hours while my step-dad took Tanner up to the playground, here in our neighborhood, and they played ball and played on the swings and monkey bars. It was great for Tanner to have some time away and able to spend it with his grandpa and just have fun, away from the reality of everything going on here at home - we have to keep reminding ourselves that although he has dealt with all of this so well since August, he is still just an 11 yr. old boy who loves and needs to have fun. Then my parents took Tanner to dinner and shopping. They came back with 2 preemie outfits and 2 "Baby's First Christmas" ornaments (1 for the family tree and 1 for Tristan's tree). Because we didn't know if Tristan would be born alive or come home we had asked, early on, that no one in the family buy him anything because I didn't want to have it at the house and I definitely didn't want to return anything - that would just break my heart, so now that he's made it this long my family is having fun buying a few things for Tristan. Again, as promised to Tanner, we celebrated Christmas by listening to Christmas music while we ate dinner and then we let Tanner spend time downstairs with Trayc's mom and we spent time upstairs in our room holding Tristan and taking pictures. Please continue to pray for Trayc's mom as she takes the "night hours", please pray for Tristan's strength, please pray for snow in the mountains (ha ha) and pray for us as we face another new day tomorrow.

THANK YOU to everyone who commented on our blog (or personally emailed us) re: our appt. with the geneticist yesterday. It was such an encouragement to Trayc as his heart was so broken! Yes, there are great doctors out there, but the Lord Jesus Christ is still and will always be in control. He is the only one who truly knows Tristan's time here with us and although we can appreciate their wisdom we cannot let it become our main focus or we'll miss out on the here-and-now and we cannot do that, we must continue "living in the moment" and enjoying every day He has given us with our miracle baby. The comments and prayers mean so much to us on a daily basis as we continue to travel this uncertain road.