Kylie at 3 months

Kylie at 3 months

Sunday, January 31, 2010

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. 

Sunday, January 24, 2010

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!

Friday, January 22, 2010

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.