Monday, September 30, 2013

Lily Update - I'm out of here!!

I can not believe it has been 3 weeks since I last posted an update. For everyone who does not follow us on facebook I apologize for the lack of communication. 

 The big news is 


and have been for 2 weeks!!!!!!

(leaving CHOP just one week after surgery)

I had trouble with my lap top in the hospital, and couldn't post to the blog.  Since being home, the days have disappeared! The first week home was full of catching up with life, doctors appointments and keeping up with 5 kids schedules.  As I left when school started, we had, had no time to adjust and find our stride.

(follow up cardiology visit)

The second week home I was sick, I think my body was telling me it was time to slow down and take care of myself!

So here we are 3 weeks post open heart surgery and 2 weeks home.  I still can't hardly believe it.  We had expected to be in the hospital for at least 2 weeks if not much longer.  We had been told because of her lungs and the extent of the surgery there was a good chance Lily would have a long recovery.

Well she showed them - this girl is not only home, but started kindergarten today.

Lily only had one really bad day in the hospital, and that was the third day post surgery.  She vomited the entire day. After that her recovery was consistent and fast.

(daddy saying goodbye)

(the rest of the week was just momma and her girl)

Once we were out of the CICU it was all about getting her up and moving, and monitoring her lungs.  She had two small effusions (fluid in the lungs), one in each lung, but each day they got smaller.  They were there when we were discharged, but gone at our followup 4 days later.

(way to cool for this joint)

Lily loved the view from the cardiac floor at CHOP

Everyone was astounded by Lily's fast recovery.  We know without a doubt that God's hands were on our little girl.  That we witnessed a miracle. We can not thank everyone enough for all the prayers for Lily and us over this time.  Every message, like on FB, text, and email meant so much to us. We have felt loved and supported.  We were so blessed to receive gifts of meal vouchers, for our stay at the hospital, they were a huge help. Because our stay was so much shorter than we expected we actually couldn't use them all, so I gifted them to another family, who was facing cardiac surgery on their 3 day old. What a blessing to help someone else out - some of you were a part of that.  

We can not say enough about the care we received at CHOP, the doctors, nurses, therapists, were all wonderful. I especially enjoyed seeing the always happy, friendly and encouraging housekeeper that came into our room every morning.

What now?

We will followup at CHOP in the next few weeks, they will continue to watch her closely and coordinate things with our local cardiologist.  She will gradually be weaned off her pulmonary hypertension medications, but very slowly. She is now on lasix to prevent fluid in her lungs, this will also be weaned off. 

 Long term - we don't know.  

Ever day is a gift, and we decided a long time ago on Lily's journey to live each day God has given us, pursuing life to it's fullest. To not be worried or concerned about tomorrow. We have always known Lily's condition was not repairable and one day she may need a heart transplant, but right now she is well, her heart is functioning and for that we are more grateful than words can express. 

It almost feels surreal to be on the other side of this.  We have waited 3 years to be here!!  We do not take our situation lightly.  Being a mother of a child with a chronic heart defect and being involved in groups with other families of children with severe heart defects, I see many hard situations. Precious children waiting for heart transplants, beautiful children who's families are being told there is nothing else to be done, children who have lost the fight here, but are now rejoicing in their heavenly Fathers arms. I am honored to be able to stand with these families, to be able to hold one another up through good times and hard times.  To cry together and rejoice together. 

What I do think I can say for certain for all the heart moms I know, is that adopting, loving, and caring for these children, is life changing. Our families are better for having them in our lives. Our perspective on life and priorities are forever changed. 

We are thankful to God every day that we were given the privilege to be Lily's parents, and to be her family.

1 comment:

a portland granny said...

I am enjoying hearing of your famiy and your little Liiy. I've looked around your blog front for your facebook name but can't find it. Do you share it?? I would love to hear updates oftener as you say you put on facebook. Thanks