Thursday, August 4, 2011

"Special Needs Challenged Parents"


Today while I was researching the divorce rate among parents of preemies I came across an interview with Robert A. Naseef who is the author of the book "Special Needs Challenged Parents". Robert A. Naseef has an autistic child and in reading the reviews it looks as if it may be geared a little towards that but will still apply to all parents of special needs children. I have quite a few Swagbucks saved up so I plan on collecting a few more and ordering some more Amazon gift cards and ordering this book. So look forward to a "review" of it in the future. If anyone has read this book and has some input about it please feel free to share in the comments below.

Tuesday, August 2, 2011

Preemie for life

I see it all the time, parents of termies (even I have thought this before I had my preemie) who know the story of your child and say "Well at least he/she is home know and all is well" or "At least the worst is over." Little do they know that the hard part has just begun. Yes my child is home but she brought the entire NICU home with her, at least as far as medical equipment is concerned. You should see our house, where our dining room table used to be now lives oxygen tanks, feeding pump, A/B Monitor and Pulse/ox monitor and now when she needs to see a specialist, well they don't come to her anymore. We have to go to them and they are downtown in a giant building but can never make appointments on the same day so more then likely you loose half your week going back and forth to specialists.

Daily, I have co-workers and friends tell me, this will be done soon and she will be "normal" and it will be fine. I normally just nod my head and say "yeah" even though I know that is most likely not true. Recently, Graham's Foundation posted a Time article to their facebook page titled "How Long Do The Effects of Being Born Premature Last? Until Adulthood" which is a very good read regarding the longest running study in the United States on premature birth. Please take the time to read this and pass it along.

If you would like to learn more about Graham's Foundation please visit there website. They can also be found on Facebook. They offer support to parents of micro preemies.

Wednesday, July 27, 2011

Vivian's days in the NICU

Vivian spent 115 days in the NICU with a slight return after only 24 days home. She was sent home with A&B monitor, 1/4 liter of oxygen and a PEG style G-Tube. She was diagnosed with bilateral Grade IV IVH with progressive hydrocephalus which was treated with a VP Shunt. Vivian has sever BPD and had Stage III ROP in both eyes. Without having to rewrite our whole story you can read our caring bridge page here. This is a place where I wrote up dates for friends and family during our NICU stay. Since our days in the NICU I have learned so much about what I saw and experienced. I learned more about my daughter and her various issues from her discharge paperwork then I ever knew in the NICU. Although I am pretty glad that I did not know half of it.

I took hundreds upon thousands of pictures during our stay and you can view some of them here.