Friday, October 16, 2009
This looks like a smile to me!! He is so much cuter than his pictures but I thought this one was cute!I cant believe that our little Nicolas has lived for 2 months! We feel so blessed to have had this time with him.. We of course pray that we will have a lot more time with him! It's an interesting thing having a child that isn't expected to live. From the time he was born I wanted to hold him every second as we were told he would most likely live for only an hour. I never wanted to put him down. The first few nights I just held him all night. When we realized he wasn't going to die immediately I started realizing I would have to sleep at some point and would put him down for a few hours at night so I could sleep. I am still in that mode, I put him down at night because I have to sleep. Other than that I hold him almost constantly. It is obvious by how messy the house is getting and how empty our fridge is! I can't take him out because we don't want him exposed to anything that might harm him( swine flu, colds, etc.) We do have to take him to the nicu twice a week for weight checks. I don't go by myself because it is a lot to haul, him in his carbed, the oxygen, the oximeter, the diaper bag... so I usually wait until Nick is off work and we go together. Lately our little peanut has been quite crabby. We think it is due to reflux. It's sad because he gets all congested and starts having a hard time catching his breath. He arches his back and screams! Right now our nine year old is holding the baby... thanks Oliver.. it gives me the time to get on here and do a quick post! I better go, thanks to those of you that have commented, I want to write back to you but have not had the time. Take care all... Lots of love....Jenna
Thursday, October 15, 2009
Thursday, October 8, 2009
Just wanted to post an update on Nicolas. He is home from Seattle and we are loving having him at home. The flight home was scary because his o2 sats dropped way into the 70's and we had to get oxygen from the flight attendants. Luckily that brought his levels back up but ever since we have been home he has needed the oxygen. We think maybe he misses being at sea level in seattle! He has times where he seems comfortable and content and other times he has crying fits and his 02 levels drop, he gets to where he can't breathe, and just when we think we should call 911 he quits and slowly becomes himself again. The doctors are thinking part of it may be his reflux. We have been told that he will most likely get a cold this winter or the flu and he will most likely not make it through that. Living everyday scared that this episode could be the one that is too much for his body to handle, is tough on all of us. We are all just trying to love little Nicolas as much as we can and hope that God will give us strength if he doesn't make it. I am so comforted to know that if he doesn't make it he will be in heaven and he will be in perfect healthy peace! He has a cousin in heaven who would be 21 today! We still pray that God will heal him and carry him through so we can watch him grow up. Please pray for him. Pray for lung capacity and that his airway would be open and strong. He keeps me super busy but I will try and post some pics when I get the time. Oh and yes, he smiled at me today and I was so happy that I started crying and i think i scared him cause a few seconds later he started to cry! oops!