Happy After Easter

Easter was fabulous.  Kylie got to put on her Easter dress and her ballet shoes and celebrate the resurrection of our Lord.  It was a nice quiet day with family and just relishing in the goodness that is our daughter. 

We also have celebrated, since the last blog, Kylie's 6-month birthday.  It is hard to believe that 6 months ago, John and I were on our way to the hospital and a whole lot of unknown.  We did not know if Kylie would be born alive or dead, we did not know if we would be able to take her home with us, and we did not know how much time we would have.  A lot has changed since then.

We have a beautful little girl who continues to surprise us every day.  Kylie continues to thrive and makes due on her own time.  Kylie has not grown much in the last few months, but we take solace in that she is healthy and alert.  Kylie is still 6 pounds 4 ounces and 20 3/4 inches.  We will take her for weigh-ins every 2 weeks to monitor her progress.  She has started eating carrots, along with her pears and rice cereal. We hope to increase her breast milk feedings to 35 ccs this week too.  I am trying to not be too disappointed in her lack of growth, but am just focusing on her thriving and doing so well. 

The picture to the right is Kylie enjoying a little bit of frosting from her 6-month cupcake.  She really seemed to enjoy it.  Drool and frosting equals much fun. 










This week, we also had the great joy of having Kylie's great Nana Kay down from Fortuna to visit as well as her great Aunt Net and her Cousins Anthony, Steven, and Jonathan.  Everyone took great joy in taking turns holding Kylie and Kylie loved all the attention.  Hearts were heavy when all left because Lanette and her family live in Pleasanton and Kay lives in Fortuna, which makes it very difficult for frequent visits.

Until next time, Kylie says, Thanks for the prayers.

Happy Palm Sunday

So sorry it has been so long since our last post.  Life has been crazy and John was sick with a cold last week and we were in lock down trying to keep Kylie healthy, which seemed to work. 

She is such a strong girl and has been doing great (no blue episodes for about a month now).  Kylie did lose a little weight last month, but we seem to think that it is from missing a feeding at night.  We have Kylie's 6 month doctor's appointment this week and hope that she will be back to 6 pounds 8 ounces or better. 

Kylie does a great job in sleeping through most of the night, most nights.  Some nights, Kylie just does not want to go down, but who can blame her.  Sometimes it is due to not pooping for a while or just her party lifestyle.  Even though those nights keep us fairly frazzled, it is so darn cute to watch.  It usually starts with her sucking on her lower lip (imagine Maggie Simpson from the Simpsons), graduates to fidgeting with her hands (imagine Mr. Burns from the Simpsons), and then goes to turning her head from side-to-side trying to check out what is going on.  Sometimes she will go back to sleep, but if she gears up, watch out.  I think she just misses her late night TV (her favorites being Chelsey Lately and Jimmy Kimmel Live). 

Kylie is turning 6 months this week and I just cannot believe it!!!  We are so proud of her and she is working so hard.  Like I said before, she is sleeping through the night most nights.  Her new big girl feat is eating rice cereal mixed with pears (for their magical pooping properties).  She usually likes the taste, but there are those times when she is not too into it.  I think her new trick is pretending to sleep when it is time for her rice and pears so she doesn't have to eat them.  I think she is just wanting something new.  Kylie is still working on trying to support her head on her own.  She does a little tummy time and can lift her head quite a bit, but still struggles.  Kylie is also enjoying the warmer weather so she can go barefoot and wiggle her toes. 

Thanks for all the love and prayers. 

Kylie and Family

Kylie's Baptism

What a whirlwind the last few weeks have been!!!  A couple weeks ago, Kylie had an issue with pooping; mainly not doing it.  After five days of being really cranky, our girl finally surprised us with some really full pants.  We figure it was due to starting Kylie on rice cereal and just starting her out too fast.  We have learned our lesson and Kylie gets one meal of rice cereal and breast milk right before bed and all is well through the night.

Last weekend, we celebrated Kylie's baptism.  It was a GREAT day of friends and family.

Kylie's godparents came all the down from Santa Maria and so did her cousins Cody and Dana.  Kylie had a fabulous christening gown from my boss Denise and a blanket from her great Nana Kay.

Lastly, we enjoyed a beautiful day at the beach.  Kylie didn't seem to mind the sunshine.

Cardiologist Appointment

Tuesday was Kylie's appointment with the cardiologist for an echocardiogram.  Let's just say Kylie was super patient for the 45 minutes that it took for them to look at her heart.  Kylie got a little restless, but I think I would too. 

Needless to say, Kylie has some pretty serious cardiac problems, usually a side effect of her Trisomy 18.  She has a VSD and PDA (Ventricular Septal Defect and Patent Ductus Arteriosus).  The cardiologist also told us that it would be near impossible to find someone to operate on her (we haven't decided if that is something that we wanted to do any way).  He was amazed by Kylie though.  He indicated that if he would have seen her at birth, he would have only given  her 1-month to live.  Here she is at 4 months and a miracle to everyone.  John and I were wondering about comfort measures for Kylie.  The cardiologist indicated that there are cardiac drugs that could do that for her, but would only prolong the end.  I of course do not understand that!!  Maybe it is just the heart of a mother screaming out what is wrong with my child being comfortable and living a little longer.  What is so wrong with extra time as long as she is happy and comfortable???  John and I have not made the decision on giving her cardiac drugs.  We will weigh options with her pediatrician and hospice.  Side effects from these drugs may also outweigh their benefit too.  The cardiologist will like to hear from us in a month and to let him know how Kylie is doing (I think he was captivated by her too). 

The other funny part of this whole story is dealing with insurance.  Insurance approved us seeing the specialist as long as we left hospice.  Without hospice, we would be lost!!!  They are a constant source of comfort and information.  They are here for us 24/7.  After grieving their denial of Kylie seeing the specialist on hospice, they of course said no again.  Out of this battle though, we did get a benefit.  Kylie was finally approved for her RSV shots (which are $1,000 a pop, but will help keep her safe from further sickness that is out there).  Insurance denied her $1,000 echo, but okayed her $1,000 RSV shots, go figure. 

Kylie has had one blue episode since then.  We thought we would make it a week without one, but we were only one day shy.  We just pray that each day will be a good one and Kylie will continue to amaze us. 

Thought we were out of the woods

We went all day yesterday without a blue spell until after Kylie's 5:00 o'clock feeding.  John had gone to Target and Kylie and I were enjoying some time together and it happened so fast.  She arched her back, let out a cry, and turned purple.  It passed relatively fast, but then happened again about 45 minutes later when John got home.  We were hoping for one day without this happening and thought we had made it through, but I guess we were not so lucky.  Typically, these episodes happen earlier in the day, some times between 10:00 and noon. 

As of this writing, Kylie is doing well.  No episodes yet on this beautiful Sunday and hope it continues. 

Thanks for all your prayers!

Kylie Needs Prayer

Kylie is now 16 weeks old, about 5 pounds 10 ounces and getting to be a cute/big girl. She continues to amaze us everyday, but prayer is needed.

Over the last 48 hours, Kylie has had 4 apnea/turning blue episodes. We think it is possibly due to her heart and have an appointment with a cardiologist this Tuesday for an echocardiogram. We pray that it is nothing too big or damaging to her heart because we do not know how or what they will be able to do to help her. We also ask for prayer for Kylie because we do not even know if she will make it to her appointment.

She is so precious to us and know that her time here with us is limited, but we just want to give her all that we can to thrive for as long as we can. She has constantly surprised us and we pray that she will continue to do so. She is the strongest person that I know.

Kylie's Photoshoot with Carolyn

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