Today has been a boring day and I am so thankful for this. Borings days=good days. Aiden has peed of tons liquid and looks like a perfect normal little baby. He has his blankets in his isolette along with a new bow that is red and says "LOVE" on it. One of our primary nurses, Rachel already has a special bond with Aiden and makes sure he is looking handsome every day. She is great! She has encouraged us to kiss his head when we see him and allows us to cradle his head and hold his hand. We are encouraged to talk to him while doing his mouth care (wiping his lips with sterile water) so that he associates anything oral to be pleasant and not scary. I hope this works. CDH babies have oral aversions and we are hoping Aiden isn't one of them. Aiden also has a special bond with another nurse, Kemmie and she just adores him. She was unable to be with him yesterday but checked on him three different times during her 12 hour shift.
The doctors today have told us that Aiden's bleed is still stable. They will not do another ultrasound again until early Monday morning. They are currently weaning his Dopamine down and increasing his Flolan (medicine for pulmonary hypertension). He is currently at 3 on his Flolan and they will increase it every 12 hours which will take until Monday evening. They are also weaning down on the ECMO support. All of this is being done to prepare for the ECHO (heart scan) that they will do on Tuesday to see if he is ready for another ECMO trial. Aiden went off ECMO the first time because of the bleed. He was not ready for this and was not able to hold his own so we decided that it would be best to go back to ECMO to give him a fighting chance to survive and pray that his bleed would not get worse. We are hoping to have lots of boring days ahead of us.
My dad is bringing Cole to Ann Arbor tomorrow along with my sister and brother. I cannot wait to see Cole. I have not seen him in 8 days. I miss him terribly! I know he is being well taken care of but I know he misses my hugs and kisses as only a mom can give him. Last night, he asked his daddy to hold him. Of course he did but I wished that was me. He has been opening up his envelopes that I made for him each night and he gets super excited. I put little notes inside with candy, stickers and crayons. He then makes me a picture. How do other CDH mothers handle being away from their children for so long? I hope I can be strong with not being with him and that it doesn't affect him and our close relationship.
Please continue to keep Aiden in your prayers. He needs them continously. He is my little scrunchie face and I love him so much. He scrunches his nose and lips and eyes when I talk to him. I am hoping that means he likes when I talk to him or sing to him and that he isn't telling me to be quiet. LOL!
Thank you for all your support and prayers as Aiden is needing them every day and night.
1 comment:
First, thank you for your comment on my blog. It made me cry! I'm so glad you get to see your little guy tomorrow, since we are closer to home the longest I've gone without seeing mine was 4 days and it was awful! More about the faces, I think he's probably just showing you he knows you are there, if he didn't like it, his face would "cry" you know?
I wanted to tell you that I think even though he had to go back on ECMO, I think it's a really good thing he was off of it for so long to begin with. Grace lasted 10 minutes the first time they trialed her and then 40 and then she was able to come off to an oscillator the 3rd time but only because of her bleed. Ana told us the first time they are trialed sometimes they just crash right away. So I am encouraged that he will come off successfully soon. Rachel is a really good nurse and having primaries that you trust is a really important thing. Has Jan managed the circut yet? I loved her. Ok, enough from me, still praying for Aiden and loving that he's boring!!
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