Nothing Short of Miraculous

Nothing Short of Miraculous

I know, I know.....It has been a long time since I have blogged, but boy have we been busy. I have spent the last week trying to get our life back on track - Grocery shopping, bills, organizing, laundry, cleaning, learning our new routine with Kennedy, etc.....

On to more important things - KENNEDY! She is doing amazing! We have been home for exactly two weeks and Kennedy has been "wowing" me in some many ways. We do have some new equipment at home, more precautionary then anything - we were sent home with an at home suction system and oxygen for Kennedy to wear at night while she is sleeping. In addition, we have changed up her feeding regime in order to avoid any possible risk of aspiration due to food intolerance and/or spit up. She is on continuous feeds from 10 pm to 10 am and then has three small feedings throughout the day. This new schedule is working out really nice for the three of us. Kennedy has not spit up once and it gives Brian and I some more flexibility in the day - it makes planning outings way easier.

Kennedy was extubated on Saturday, May 30th and we never looked back. She was placed on nasal cannula for 12 - 14 hours post extubation at 1/4 liter and then was taken off nasal cannula the very next day - SHE DID IT! She is amazing! I feel so honored to call Kennedy my daughter. As usual the doctors came by and were amazed that Kennedy was doing so well. As we all know, everyone was counting her out about a week prior, but not me! I was not about to count Kennedy out until she was out. I stayed positive and up beat, because I am a firm believer that Kennedy can sense your mood and her surrounding atmosphere. From the day she was born I had a "no crying" rule set forth, that stated no one was to cry at Kennedy's bedside. She is fighting a tough battle and does not need to be surrounded with tears and sadness. When we are by her side she needs to feel positivity, happiness, and love! She needs to know that there is a reason why she is fighting. Attitude and positivity are everything - if I walked into Kennedy's hospital room acting exactly how I felt I would never want to step foot through her door, I would want to run away hide in a corner under the covers.

Now that we are home Kennedy is surpassing all my expectations.  She is smiling a couple times a day.  In addition, she is starting to babble (she makes repetitive vowel sounds over and over).  That's right folks - Kennedy is babbling and smiling!!!!  It may sound weird but she is actually doing the best she has ever done.  She is not moving any more but her mind seems more on point.  She is also not looking up anymore.  She is making eye contact (periodically) and will focus and watch the TV.

We have yet to see any of her doctors since we have been discharged, we missed most of our appointments while we were in the PICU, and rescheduling has been oh so fun.  I mean, really, how can they booked out 'til August and why do  I have to sit on hold for over an hour and still have nobody pick up the line???  I am very anxious to see Kennedy's pediatrician - I am dying to find out what he thinks is up with Kennedy's chest.  When we arrived home a couple weeks ago Brian and I noticed that Kennedy's breast bone or sternum was protruding out and off to the left side - it sounds like she has Pigeon Chest??  I have no idea, so I am dying to get my foot into that doctors office and ramble off 20 questions.

I will keep you all updated......PROMISE