Sunday, July 28, 2013

other heart moms; tantrums

I love the weekends.  Spending the day at the hospital with our entire family is much better then doing it alone.  Capri is still doing great we just need her to eat on her own and gain weight.  She is down to 5 pounds 12oz so she has lost a few ounces since she was born.  She is only on .12liters of oxygen which is hardly any.  That is what the cardiologists want to send her home on.  She slept most of the day today, hopefully because she is growing.

As i was laying in bed tonight i got on the intermountain heart Facebook page.  a page dedicated to moms in the salt lake area with heart babies.  I started looking through all of there blogs and found 1 with an ebsteins baby. Ebsteins affects 1 in 10,000 babies so finding other parents going through this is not very common.  Ive spent the last hour reading her blog, from her son being born, to going through his first surgery to living a normal life till he was 1 or 2.  Then they flew him to Minnesota to do a cone procedure.  This is a surgery that we have looked at length into and seems like one of the best options for ebstein babies.  As i was reading her story it felt like i was looking into our future of what was to come.  The fear of bringing her home and sleepless nights wondering if she is going to breath or not.  It is a relief to read other peoples stories and see there babies doing so well.  That means Capri has a chance too.  I have had several people email me there stories of their ebstein baby who made it to 10 or 11 months.  I know that there is a good chance that that can be our reality but we could also be in the 5% group that makes it to adulthood.  She has already defeated so many odds why not a few more.

I wish i knew what to do to help A with all of this.  He is having emotional break downs all day long.  He used to hardly ever cry but is now throwing tantrums 5-6 times a day. It is always over little things like another child is playing with the train, or his sister bumped his arm.  I don't know what to do to help him be okay again.  Im worried that when he starts preschool in a few weeks he is going to continue these tantrums at school.  He wasn't like this before i was admitted into the hospital.  Any advice to help him would be greatly appreciated.