What’s Up w/ the Kids Anyway?

Both Girls:

          Sacral Dimple

           Heart Murmurs – (healed up on their own)


        Hemangiomas – These are very common and people usually refer to them as “Stork Bites”. The only reason Evy’s were a concern was because she had SO many of them from head to toe which could indicate that they were on her internal organs as well. If that turns out to be the case and they become problematic, she would have to undergo Chemo to shrink them (even though they are NOT cancerous). They do not seem to be growing much at all, so we are not anticipating a problem.

          VSD – healed on it’s own! Yippie!!


            Bicuspid Heart Valve – Len’s heart is working fine at the moment, but she will be followed closely as she grows as sometimes issues crop up after a growth spurt. The doctors are anticipating that she will need a valve replacement in her 30’s.

             Metopic Craniosyntosis  – This one is new and we are still waiting for our follow up. We will likely have surgery soon.

                      * We have a new site just for Lennon’s Metopic Journey

The New Bean:

          ??? – the doctors are worried because both girls have congenital heart defects (i.e. inherited them from mom and/or dad), and both “almost” had spina bifida. Lennon’s craniosyntosis is also genetic*. What does all of this mean? We have a great shot of having another baby with “issues” and we likely won’t be having anymore after this. The doctors want to run a million tests on the Bean before it’s even born…we shall see.

                    * We have since been told that Lennon’s craniosyntosis is actually NOT likely to be genetic, but situational.

****Updated 07/2010*****

           * Several months before his birth we were told that Nolan had Down’s Syndrome. After everything we had been through with the girls we were devastated, but refused to have an amnio to confirm due to the risk of miscarriage. We waited until 35 weeks. He does NOT have DS.

           * On 11/05/2010 Nolan Xavier was born completely healthy and has been the sweetest, easiest baby ever since. (knock on wood)


2 Responses to “What’s Up w/ the Kids Anyway?”

  1. Brianne May 22, 2009 at 1:13 pm #

    Been reading your blog for awhile now (found initially through Ms J’s blog). I am hoping you can avoid all the issues with the new baby even though the girls’ issues are congenital. You have to be cut a break somewhere, right?
    PS- one of my b/g twins (boy) had a facial hemangioma appear around 4-5 weeks of age.


  1. Empty Uterus Syndrome - July 25, 2010

    […] What’s Up With the Girls Anyway? […]

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