A picture is worth a thousand words they say.... The following pictures (taken by my wonderful friend and photographer Laura Luongo) show Rosalie's first minutes, hours and days.  It's hard to believe that days have turned into weeks and weeks into a month.... She was diagnosed with Trisomy 18 and wasn't supposed to survive birth, but so far she has proved everyone wrong!

Laura Luongo Photography

Change of Plans again...

It's been a little over a month, I gave birth on November 28th and contrary to everything I prepared for, Rosalie Anne was born alive and is doing well as we start the year 2012. She was 3 lbs 5 oz and 16 inches long. She is still the same size... She is very little but oh so very strong. I'm grateful that I get to spend time with her, to get to know her and be a mom. I remember when I got the news all I asked for was a minute so I could meet her, I just wanted enough time to say hello and good-bye... BUT she had different plans and was released with hospice care the day after she was born.

A nurse comes every other day to our house to check her heart, oxygen level and lungs but so far she is doing well with no interference. Julie is our hospice nurse and she is just amazing, I wasn't sure how I would feel about a nurse coming over to check on the baby... but she is so caring, answers all our questions and makes us feel at ease, I actually look forward to her coming. She comes with a social worker Kenny, who is so sweet and compassionate. It's an awesome team and we are grateful to have them in our lives. It's overwhelming at times and it is nice to have that help and support.

For now I'm busy being a new mom, she is just like any other baby... wakes up every few hours to eat, get changed and back to sleep. So far she is doing well, that is the most important thing. She is comfortable and she is not suffering. 

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I get more and more nervous as the due date gets closer. It's finally sinking in what I have yet to face. I'm trying not to think about it, but I need to prepare. I have a meeting with Tracy the social worker tomorrow at 10:30am at the hospital. She coordinated a meeting with the head L&D nurse, palliative care and a pediatrician. It will be good for me so I know what to expect and what options I have but I feel it is going to be very hard and a bit of a reality check.

I'm trying to stay busy with other things, trying to make plans to replace what I thought I would be doing. It's hard since I don't know what to expect. I don't know what plans my baby has, docs tell me her diagnosis is fatal but I read about cases about babies with Trisomy 18 surviving for hours, weeks, months, years.. so I just don't know. I don't know...

For now, I managed to finish my master's degree with three As, I'm not sure how I managed that since I got the news right around finals, but I pulled myself together and finished strong. It's good therapy for me to work towards a goal, I can't sit here and think of what could be.... it will drive me crazy.

Labor & Delivery Tour today

Today we are going to the hospital to meet Kris a nurse that is going to give us a private tour of Labor and Delivery. It was very nice of her, every Tuesday CMH offers a tour of the Labor and Delivery department for expecting moms and their families but when we pulled her aside to explain our case she offered to give us a private tour instead. I really appreciate it because it is very hard for me right now to deal with these things. I looked around at all the expecting moms waiting for the tour and couldn't help but be a little jealous that they were all excited, delivering healthy babies. I have to keep reminding myself not to ask why... why did this happen, why me.... I need to remember that we didn't do anything that could have caused this and we can't do anything to fix it. It is important to focus not on why but what now...

Where to begin....

It has been 3 weeks since I found out the news that my baby girl, Rosalie Anne, has Trisomy 18. Although I have been able to wrap my head around the news, I'm still stunned.

Trisomy 18 is a chromosomal abnormality, instead of the normal 2 number 18 chromosomes there are three, which causes severe medical complications. It is not hereditary and it happens about 1 in every 3000 births. I learned a lot about this condition at www.trisomy18.org, and there is a section called Legacy Pages under Get Support that was very helpful to me.

I'm scared about delivery, there is so much uncertainty. Thankfully I have a good support system, and on Monday I'm going to meet Tracy a social worker at the hospital who is going to help us through this. I'm due November 28th, so we are just waiting and enjoying Rosalie Anne all we can, while we can.

I want to focus on the good things that have happened so far. It is interesting how things happen, I had missed a screening that could have caught this early enough that I could have terminated the pregnancy instead I found out at my 8 month check up. Looking back (and although I'm very scared about what is up ahead) I'm glad that it happened this way. I have enjoyed my pregnancy from day 1, I've never felt better. I have enjoyed decorating the nursery and shopping for baby stuff. I enjoy feeling her move and bonding with her every day. I just hope I'm feeling this strong when I deliver.