Kylie at 3 months

Kylie at 3 months

Sunday, September 5, 2010

Here we are again

Here are are again and sorry again for taking so long to post!!!  Life has been hectic around here, but it should be no excuse for our absense here on the blog. 

Kylie is now a whopping 7.2 pounds.  We are slow going, but the doctor figures that Kylie's heart will dictate her growth and will only allow her to get as big as her heart will allow.  It is always hard to hear this, but I guess it's a reality that I have to recognize at times.  It is easy to get lulled into thinking that Kylie is normal, when clearly she isn't, but we are able to do this nonetheless.  Kylie has also been dealing with breathing issues.  Her breathing is very shallow when she sleeps and almost nonexistent if she is very relaxed.  I really do not get any sleep at all because I am monitoring her breathing constantly and the other times, she is not sleeping at all.  We are using oxygen on Kylie more often, but it seems to help her when she is working too hard breathing.  For the past 2 weeks, she has been wanting to party all night long.  John and I tend to play tag team on those nights and let's just say that the nights become a blur. 

On a positive note, we are planning Kylie's 1-year birthday party.  It took us a little while to be okay with planning such a task, but we are full force!!  It is so much fun to plan a big day to celebrate with friends and family the life of our little one.  She is so strong and such an inspiration to me and others, just writing it right now brings tears to my eyes.  She makes us so happy and is such a blessing; no matter how hard our lives are, she is worth every moment.

We still do not have any teeth, but are expecting some soon.  Kylie loves to suck on her mittens (which we still keep on her because of her feeding tube) and is drooling a little more.  Kylie is smiling a lot more and giggling and babbling a little (yes sometimes at midnight--she is truly a girl). 

Thanks for all your prayers!!  They give us much comfort and they do help tons!!! 


  1. Wow Stacy she looks to me like she's really grown and changed a lot. I'm so glad you are planning on a big party....she's worth every bit of it. I think of you all often and check your blog regularly for updates, as well as FF to see if there are any on there as well. You continue to be in my prayers and I pray you all start getting some better sleep!

    Cathy (Oct. 09 FF)

  2. I am praying for Kylie and her family! She is soo beautiful! I look forward to every update. I wanted to share this you tube video of a baby with Trisomy 18. Keep growing strong Kylie!