Wednesday, December 1, 2010

Conquering Fears One At A Time

I sit here today looking back over the last 2 years. I know some people believe that dates dont mean anything but to me they mean alot. For me the symbolise fears and acheivements.

As I sit here right now and think were we were 2 years ago. I was sitting with Johm Mills being told my baby was very very sick. She was 3 days old already and I hadnt even held her, she was being kept alive by a breathing machine and her life held on by a thread.

I was able to place Michael's wedding ring over her tiny hands, her very first bangle. Stop for a moment and take a look at your husbands wedding band and then imagine placing it over the wrist of your newborn baby.

I look back to this day and part of me wants to go back, because while yes we had a premature baby and a very sick premature baby, we had a premature baby with all her organs, she would grow and she would fight and we would soon bring her home and life would go on.

But part of me wouldnt go back. I love Sarah with all my heart and have accepted her for who she is, a very special little girl who has touched the hearts of many.

I feel blessed to be the Mum of this little girl who has had to learn to live in our world and I have had to learn to live in her world, and its been a challange.

We had an issue with her Insulin pump yesterday in where it completly malfuctioned, Id been checking her blood sugars all day and they were fine, until the afternoon where they shot up and then I checked her ketones and they were 6.7, which is an incredibly dangerous level. She had been awefully grumpy and no wonder why, but I had no idea her pump had malfuctioned.

I froze. Id never seen Ketones so high. So I called the hospital and I gave her an injection of insulin. I sit here waiting for a replacement pump which should arrive tomorrow, and in the meantime we are giving insulin by injection every 4 hours.

One of the worst things about Sarah is the unknown and nightime is incredibly hard. We do not know why Sarah has seizures but they often come at night.

This morning when Sarah woke she was acting very funny. I immediate thoughts went to low BGL and as I checked that it was HI, so it wasnt a hypo, but just as quick as the episode happened it was over and it registers that it was a seizure.

None of the other children with Pancreatic Agenesis suffer from seizures so we are unsure why Sarah does, and we are very much struggling with our decision to start her on Anti-Seizure medication. We know by starting it we are protecting her brain, but in exchange for that we are sacrificing her Liver.

Last weekend saw Sarah reach her 2nd Bday, it was a quiet day with lots of reflection on how far she has come and this weekend her friends from NICU are joining her for a little party which we are very much looking forward to!

1 comment:

Trine said...

What an incredibly life Sarah has had so far! This precious little girl is obviously meant to be here! Sending love, Trine from (I found you on fb but I couldn't like you from my page for some reason!)