We have been busy this week. Lincoln will be home on Friday if all goes as planned. We will room in wed and thurs night. I am really scared, nervous, worried, and overwhelmed. The girls are just getting over a nasty virus, seem to be doing better as they both went to their Soccer games today and only Kennedy could play in hers. I am hoping all the nasty germs will be outta the house by Friday.
This week we finished painting the boys rooms, set the cribs up, decorated the nursery and washed all the clothes and diapers. The amby bed is set up in our room and we got a swing. We are preparing for the homecoming of Lincoln Kent! He will come home on monitors and Oxygen as he has not fully weaned off of it.
Pierce still struggles. We tried Nitric Oxide and that only helped a little but not enough to keep him on it. He is now on his 3rd round of steroids, we are trying to get him on the conventional ventilator. Respiratory wise we arent seeing much improvements. The decadron has helped alot though but he is no where near close to being on CPAP and the drs doubt he will wean off of it any time soon. I really hope he turns around and weans soon. The thought of a trach scares me so much. He is struggling so much more than his brother and it hurts so much. It is typical of TTTS twins that one does better than the other. There was a 10oz difference at birth, now the gap is much bigger. P is 3lbs1oz and L is 6lbs3oz now. Alot of Pierce's growth problem is due to having NEC and still having issues with his belly. He has lost 15cm of intestine, still doesnt digest anything, and has trouble when his feeds go above 2.5cc. I worry that he will be on TPN too long which will cause his liver to fail.
I am having a hard time dealing with one coming home and the other staying in the NICU for what could be months still. The girls have been through major changes and homeschooling isnt working. They have been with one of my good friends in the homeschool group we belong to but the girls arent being challenged and their not learning how I would like them to be. We thought it over and decided that we needed another option for them. We chose Montessori school and they start on Monday. This is a big change for them and both dont want to go but it is the only way it will work. I will be home with Lincoln and it wont be possible for me to teach them
Life is going, one step at a time
2 comments:
Congratulations on the upcoming homecoming for Lincoln, Aimee! So many changes occuring all at once are indeed overwhelming. I was VERY overwhelmed bringing our twins home - way more than when they were in the hospital and Celia in the nicu, but you take it hour by hour, day by day and you get through it. I pray that things flow more smoothly with time. :) Your friend, Jill
Well I hope that all goes as planned for Lincoln and his homecoming! It is VERY scary, especially when coming home on oxygen and a monitor but you will be amazed at how comfortable you will be once you are in your own home with him.
I'm sorry to hear that Pierce isn't doing as well but he has fought for so long I just pray that he continues to do so!
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