PICU - Day 4

Holding pnut for the first time in 4 days!
Its day 4 in the PICU at Phoenix Children's Hospital. The staff here has been great. Two of our other children were able to come and visit Nicolas for awhile today. Our youngest wasn't allowed in as he is only nine years old and you have to be 12 to visit. Nicolas is doing well. He no longer has the fever that he had immediately after surgery and for about 2 days afterwards. He has gained weight also and that is really good news to us. He weighed 9lbs 3oz before surgery and is now weighing 9lbs 11 oz. They don't want him to gain too much too fast so they will have to adjust his food accordingly. They are giving him 24 calorie formula with added rice to thicken it to help with his reflux. I think it might really be helping as his reflux symptoms have seemed to decrease. He has a swallow study this week and we are consulting with specialists about his spine(kyphosis and scoliosis). It gets so hard to hear the negativity of some doctors. That is one thing I can say about this hospital, we are yet to meet a specialist that gave us the "your kid is probably not going to live" speech. Hopefully that will continue. I mean, we all know that he has campomelic dysplasia and that the odds aren't in his favor. But we also know that there are children living with this condition, not only living, but thriving. They must realize that we didn't relocate our family 1500 miles away to hear negativity, we came here for hope! Well, little sweetie is waking up so I have to go. Please keep praying for us. Prayers that Nicolas wont need surgery for his spine, for protection from infection, for strength and healing for our little guy. Thanks friends! Love, Jenna

Life changes

All of our kiddos at Christmas


I have been meaning to write here, my little corner of the web, and update all of you on peanut but I keep putting it off for a few reasons. We have been told that baby Nicolas needs a trach and will most likely be on a vent for some time afterwards. No one knows how long, only that without it he will not thrive and will likely not survive. But to bring him home from the hospital we would have to live in an area that could support a home "vent" system, our area is not able to provide the service. We also know that Nicolas will need a team of specialists to deal with his other medical needs if, God willing, he makes it to that point. I am still not ready to talk about what happened, to my heart, as I had to decide to move and save my son, even though it meant I would have to leave another son behind with his dad. I wrote this out a few times and went into way too many details and I didn't want my son to read it(now or ever) and feel bad. I will just say that he was all ready to move with us and at the last minute he was "talked into" not moving. He had already felt so torn and then this was done to him. I don't want him to feel bad or be sad or feel he has to make anyone "happy"... that isn't his burden to bear... so I decided that in faith I would move, and pray that one day my other son will decide to change his mind and join our family here. I didn't know how I could stay and let my baby die, and I still don't know how I pulled out of town without one of my babies!


Allie and Nicolas

Tim and Nicolas

OK I cant write about that anymore... please just pray for all of us. P is doing ok, he saw two doctors today... a pulmonologist and an ENT... the pulmonologist said that he thought Nicolas was ready for a trach based on the history he read from seattle, the ENT said maybe not, maybe he won't need it. I am pretty sure, unfortunately, that he will need it but think that a reevaluation of the whole situation won't be a bad thing. I will know more in a few days and will update the blog again.. I just had to get past this post....

My four boys....