Friday, December 28, 2012

Memories in the Making

Memories in the making has been my theme this Christmas. It keeps me thankful and reminds me that this whole experience will be a distant memory someday that we will laugh about some, tell both our our children about and always hold dear. Spending Christmas in a hospital might seem dreary and sad, but not in a children's hospital!! I tell you, Cook Children's Hospital does it right. They are so wonderful and thoughtful in all of it and try to make each patient and their family feel at home and loved on. Noah got to make an ornament with his footprint, he got a stocking that has Cook Children NICU 2012 on it and pictures with Santa. (ava still hasn't had a picture made with santa,totally our fault) On top of that the hospital had us pick out some toys and books, etc for each of our children (ava included) and they were sent up to noah's room on Christmas Eve. So sweet. They have had beautiful decorations up all season and Ava likes to say TCHEE at each Christmas tree we come across and they are everywhere! haha. They have beautiful lights up outside with a big tree out front that plays Christmas music. It truly has been a magical time. If you are going to spend time, anytime, especially Christmas, in a hospital, make it a children's one. haha! My family has been here since Friday. A whole week already. Time does fly when you're having fun. It drags when I'm by myself. None the less, they have been here and have been a blessing to have. I have been able to take a break from being at the hospital all day, everyday. I have had lots and lots of Ava time. (she and I both needed that desperately...mainly me) Hubby has been close by the whole time, sister and I have been able to cook, laugh, visit, catch up, etc. Dad and Mom have been able to hide up in Noah's room and hang out with him lots, which they love of course. I'm just thankful. We made cheeseball and had shrimp (two traditional Christmas eve foods at mimi and pawpaw's house) We started a new thing for Christmas day lunch of chicken strips and the works. fun! Staci and I made the whole meal (not all from scratch, but the mashed potatoes for sure) haha. We've been to the mall, played in the Pirate Cove here at the hospital a lot. We've had fun.
Noah has had a good holiday and has made some progress we feel. He is hovering around 1 liter of oxygen right now. His saturations still plummet sometimes when he gets mad, but not as bad as they had been. He is still on pain meds, but just 1 dose a day. We'll see how they lessen the dose on him and maybe he will do better weaning this time. He is doing well on feedings. He is getting around 80 mls in 30 mins every 3 hours. sometimes a bit more. I am so so so so thankful for his gut to be working well and tolerating feeds. I know that we might still go home on a g-tube, but we are still practicing with a bottle and in the mean time he is keeping a regular amount of food down at a normal pace, just not through a bottle. He has speech come in and work with him daily on this right now, so maybe we will make some headway with it. What, the clot. What a weird thing. They did a doppler on the clot and it is still there. It has not gotten bigger. There are two jugular veins in the neck...inner and outer. The inner one has the clot and it is pretty bad, but the outer jugular vein has gotten bigger and has taken on the blood flow of both inner and outer. The clot is being nursed with blood thinners and it still might be able to break up and be gone, but it is a SLOW process for that to happen. The big concern around the clot issue is when they could do surgery #2 which is a very necessary surgery for Noah to continue to improve his cardiac function. So, we wait on the surgeon to get back from vacation (fresh and ready to go, thank you Lord) and see what he wants to do and when. So...I think that is all for now. We feel your prayers. We see God working. Thank you for continuing down this journey with us. We are beginning to feel the length of it now more than ever, but we are holding on and doing our best to keep a functioning schedule and normal pace for Ava, and a consistent support and presence here for Noah.  I am hoping to possibly have another partial week at home in the next month or so, as well as have my wisdom teeth taken out. :( :( My daddy is coming down here to nurse me and hang out with noah up here during that time. My father in law might be able to come down and spend some time with Noah while I go home for a long weekend perhaps. So, hopefully that will happen. We also would just like to get surgery 2 out of the way and decide on the g-tube stuff and get home as well. I mean, to be quite honest... but we take things a day, sometimes just moments at a time.
again, we love you all. thank you for the constant support and love.

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