Tuesday, November 29, 2011

So fast yet so slow

Four days.  In four short days Finn will turn one.  I can't even believe I just typed that.  One.  Where did this year go?  It seems like yesterday that I was laying in bed, hugely pregnant, playing games all night long the night before my c-section.  I remember being nervous about the surgery, after all it was my fourth c-section and it was so close to Teagan's that I was scared that something could go wrong.  I remember worrying about my doctor, this was the first birth I had without my old OB who I trusted immensely and had a fantastic relationship with, and this was going to be in a different hospital as well so I wouldn't know their procedures or how everything would work.  I was also excited.  I couldn't wait to see Finn, hold him in my arms right up next to my heart.  To see his sweet fingers and toes and finally get to see the little person who I had gotten to know through kicks and squirms.  There is something surreal about those nights before a scheduled delivery, staring at a clear cut threshold of moving from pregnant to new mom that makes the night sort of magical.

Here we sit almost a year later.  It feels like just yesterday, but it also feels like we have had Finn so much longer.  It has been tough at times.  He scared the life out of me on my birthday when he had the episode that kicked off all of the testing and examinations.  That day is etched in my mind forever, there is nothing like seeing your little baby unresponsive and so very still.  I am thankful we had a pediatrician who saw us right away and who got the ball moving.  The first stop was cardiology since we knew he had a murmur, and then blood work.  Cardiology revealed a more significant heart defect than we had suspected, the same one I have although his is in a different location on the aorta and is impacting his valve a bit.  Blood work was pretty normal which was a good sign at the time.  Then Finn decided he was over the growing thing and just stopped.  Didn't grow at all, didn't gain an ounce, didn't make any developmental gains and generally he was floppy.  We called him snake boy or rubber boy because he could bend all sorts of strange ways and he never felt solid in our arms, always more like a newborn and not like an infant of nearly 8 months.  It was frustrating since he was eating like mad and not sleeping at all and the pediatrician kept telling us to feed him more even though he easily out ate my bigger kids most days.  Genetics had come up a few times in conversations with cardiology, so we decided it was time and took him to Children's Hospital.  The team there was great and immediately saw that he had some characteristics of an elastin deficiency.  The loose skin, poor muscle tone and hypermobility being key, as well as the heart defect, potentially a hypermetabolism and a few other things keyed them in to a fairly rare disorder.  We began the testing and are still waiting for results to see if we have founded which form of the disorder he may have.  It is hard because the prognosis is unknown and the range is everything from normal to fatal.  He seems healthy, happy and aside from some delays we believe he is doing well.  He is a bit behind in some areas and seems more like a 9 month old than a 12 month old so we have begun the process of early intervention to see if we can get services for physical and/or speech therapy to help him catch up and work on some of the muscle tone issues, and once we are sure of the diagnosis we will see a pulmonalogist to ensure his lungs are doing well.  This part of the year, the medical unknowns and the process we are working through has been hard emotionally, but day in and day out, that is not our focus.

Our sweet Finn is an amazing little boy.  He is bright and determined, strong willed and happy, snuggly and sweet.  He rarely cries or fusses, is quick with a smile and engages anyone he meets.  Our family is better for having Finn.  He has captured our hearts and is loved so deeply by all six of us.  Finn is fought over by the big kids, they love to kiss on him, hold him, play with him and snuggle with our easy going boy.  Teagan is his biggest fan.  She loves him whole heartedly.  She lights up when she sees him, loves to be silly and make him laugh and says at least 10 times a day "My Finny loves me!"  She loves to hug him and help him, so much so that she stole the spoon out of his yogurt today to feed him when Ryan turned away for a moment.  I love that they have each other, I was a bit sad for her when I realized that she would not have anyone close in age, but fate knew better and just 16 months later she had a buddy and a friend.

Four days.  Again so close and so far away. I cannot wait to sing Happy Birthday for my boy and help blow out his candles.  He can have the wish, I will be taking that moment to be so very thankful.

No comments: