Tuesday, April 8, 2014

tube free baby

Look who is a tube free baby! Just picture a "normal" 5 month old baby  and Capri would fit in just about right :)  At the rate she is going though we will be caught up to "normal baby" status by her first birthday. 

We took her to see a GI doctor today because over the last week she has had a lot of blood in her stools.  (sorry TMI)  I was worried about NEC.. which is where portions of your bowel undergo necrosis or tissue death.  It normally happens in premie babies but is one of the side effects of  the thickening agent she is on to let her drink from a bottle.  Fortunatly her xrays looked normal so hopefully we will hear back in the next few days about the blood cultures to figure out why she has having the gi issues.

Tommorow is a big day for my family.  My sister is going in for surgery to fix her herniated belly button.  I wish we could be there to help her recover but we will be heading to Wyoming in 2 weeks so making a trip right now wasn't feasible.  I am going in for a spinal MRI first thing in the morning to see if I have any permanent damage on a nerve.  I had a pinched nerve 7 months ago that I kept meaning to go to the doctor for but life happened and Capris doctor visits came first and it just never happened.  Well over the last couple months my arm has lost some feeling to it and  feels like I  have a permanent sunburn so we are ruling out any permanent damage.  Hopefully they will tell me I need to take some steroids and just send me on my way.

With any luck at all Capris tests will come back all clear, my tests will come back clear, my sisters surgery will be successful and we can all just forget about hospitals for awhile!

Wednesday, April 2, 2014

we are still here

I cant believe its already been a month since we have been home.  This month has gone by so fast, a whirlwind of trying to get back into a normal routine and follow ups with about a million doctors.  I have enjoyed so much being away from computers and just spending time with my family that i apologize to everyone for not being better at updating on Capri.

She has been dong so great!  She is slowly gaining weight and working on feeding.  She continues to fail her swallow studies but is able to drink from a bottle as long as the milk is the consistency of honey.  Her goal is to drink 24 ounces in a day and right now she is getting about 15 of those through a bottle.  We are so close to getting rid of that feeding tube!

We are also losing her portable oxygen tanks on friday.  I expressed my concerns to her cardiologist about wanting to keep one in my car just incase she went into SVT.  His response was "kendra, its been 3 months since shes had any SVT.. its time to let go of the tanks.. she is better now".  Well its going to be his fault when he sees me in a month and all of my hair has turned grey :)

We are working with occupational therapists and physical therapists 3 times a week to get Capri back on track with normal "baby things".  She is tolerating being on her stomach for almost a minute at a time.  She isnt sitting yet but she did finally laugh for the first time which was the most beautiful sound  i have ever heard.

This whole experience has changed me as a  person. I have watched other families go through experiences like ours and have thought to myself "i am so lucky to have my family"  "im going to hold my kids just a little bit closer tonight"  but then tomorrow comes and life gets back to normal and i forget about that moment.  Capri has changed that in me.  Every moment i have with the kids i have the thought burned into my head "what if this is our last moment together"  Every time i kiss my husband goodnight the first thought in my head is "what if we don't wake up tomorrow?"  This living in constant fear is both a blessing and a curse.  I dont take moments for granted anymore yet i dont know how to get off of this emergency roller coaster.  I hope that in time things will get easier and i wont be such a ball of stress.  That i will remember to cherish every moment but with enjoyment vs fear.  In time im sure I will.  Someday this will all be a distant memory of Capris crazy first year of life.