Hello Again

Hello all, if anyone is still reading. 

I have missed giving my updates of our sweet little Kylie.  She was such an amazing part of our lives and now that she is gone, life is a little lonlier right now.  John and I are doing fine (as well as the dogs and chickens), we just miss our little girl so much.  Since Kylie's passing, we just fill our days with honey do lists, work, eating, and visiting Kylie's grave.  She has a really sweet place at the cemetery (not too far in the sun, she really didn't like the sun too much) and it is very peaceful there.  Kylie has a pet squirrel that visits often. 

I also wanted to take a moment to thank you all for your support through this painful time.  You all held us up in prayer and gave us strength and love and I cannot thank you enough for that.  The cards, gifts, and donations in Kylie's name have been so sweet and heartfelt and thanks does not seem to be enough.  I am still amazed that such a sweet damaged little girl touched so many lives and taught so many how to love a little better, appreciate life a little more, finding strength in relying on god, and teaching me there is always room for hope and to never give up. 

What a sweet memory and love we have in Kylie.

Love and talk soon,
Stacy

Prayers Please

It's official. Kylie has a cold and it is doing what we thought...severely messing with her breathing. Hospice ordered a nebulizer and she seems to like it.


Her eyes got big and gunk came out later. Please pray for a speedy recovery for our little fighter.

Thanks and love.
Posted using BlogPress from my iPhone

Little Fatty

Had a weight check yesterday with our little girl and she is now 7 pounds 14 ounces. She is slowly getting bigger, which is good for her damaged heart.Kylie is even starting to fit into 3 month baby clothes. It will be fun when we get to buy size 1 diapers instead of the newborn. Kylie's breathing is still okay and we use oxygen when she sleeps. We look forward to a great Thanksgiving with family an wish everyone a wonderful holiday.






- Posted using BlogPress from my iPhone

Here we are again

Of course it's been months since I last posted and I am again terribly sorry!! Since the last time that I posted, we've had a birthday, a little weight gain, and some updates.

The week before Kylie's birthday was very scary. Her breathing took a turn for the worst and we were afraid we were going to lose her. Kylie made it to her big day and we celebrated with tons of friends and family.



Kylie has also gained some weight. Our little fatty is now 7 pounds 13 ounces. She has also received her first round of RSV shots and we are praying that the cold and flu stays away this year.



We had a great Halloween and Kylie was our little mermaid. We had fun trick-or-treating with the neighborhood kids and walked a few streets with Kylie while she looked at the lights and listened to the different sounds.






Lastly, we two new additions to our family. We adopted chickens from my friend from work and they are making themselves at home in our backyard.



I have this new app on my phone and hope to be a little more consistent with my posts.

Take care and love!!!

- Posted using BlogPress from my iPhone

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!!! 

Kylie Is Getting Bigger

After another loss of weight (getting down to 6 pounds 6 ounces), Kylie finally jumped to 6 pounds12 ounces.  We are so happy!!!  She still loves eating her veges (especially carrots, green beans, and peas).  We are feeding Kylie an increased concentration of Similac Alimentum coupled with breast milk.  Every other feeding we give her only formula and she seems to be doing very well with it. 

We love to see her growing stronger every single day.  The added benefit of Kylie gaining weight is her being able to sleep a little better through the night, phew!!  We still wake up every three hours to feed her (as she still needs her calories), but she does not wake up hungry or fussy any more.  Our little girl is waking up happy and ready to face the word. 

I also noticed when she was losing weight, she was not wanting to (or could not) lift her head as much.  Now she is back to playing with possibly lifting her head.  We would love to see her a little more independent and I tell Kylie all the time that lifting her head will open a whole new world for her. 

For being 9 months old, she is still so very small and as we are out in the world and people ewww and ahhh over her, it is a reminder of not only how strong she is and a fighter, but how much more we are going to have to face in the future.  Looking at these little pink toes make the worry melt away.

Our Tiny Dancer

Our Little Fatty

Kylie had a great doctor's visit yesterday.  She gained another 2 ounces and is now 6 pounds 8 ounces.  I really hope that we are on the way to some healthy weight gain.  We are so pleased.

Kylie also gave us a scare yesterday.  While practicing some bottle feeding, Kylie asphyxiated on some milk.  She had a really bad time of it, having a difficult time breathing, her coloring being very pale, and just giving us a very bad scare.  Hospice, as usual, was right on it.  They guided the grandparents (as John and I were at work) in what to do and our hospice nurse was hot on the way over to our house.  John and I have never had a longer drive home from work. 

After a very dicey afternoon, Kylie recovered (she is so strong) and is now back to herself.  We were scared for a while of her having fluid in her lungs, but after a day, she did not have any fluid left over.