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.

Saturday, September 7, 2013

Surgery Recap and Day One

I know most of you followed our updates on Lily yesterday via facebook, so sorry if this is repetitive, but I want to post here for those who only check our blog and for our own personal journal.
We arrived in Philly on Thursday so Lily could get blood work drawn in preparation for surgery. She did great at the hospital, cooperated, and showed no signs of stress.  She has come so far from the girl that would start crying as soon as we took the hospital exit off of the highway, and not stop until we left!!

We were very excited to get a room at the Ronald Mcdonald House - what a blessing and amazing charity.  Not only can we stay there for very little cost, but they provide a meal every night, you can do laundry, and also meet some amazing families taking care of their sick children.  One ladies baby has been in the hospital for a year - I can not imagine!!
Lily got a good night sleep and woke up ready to go for the big day.  She walked into CHOP, smiling and laughing!!
She did great during the preop, held her arm out for the IV and didn't even cry.
They gave her some "happy meds" before wheeling her to the operating room - she was hilarious, she almost immediately started laughing, she laughed all the way to the elevator, where we had to say goodbye.
This was the hardest part for me, watching them take her away, but only a few moments for tears and it was off to talk to the cardiac surgeon, Dr Spray.  He explained what they were going to do.  We discussed the two procedures, the Glenn and Fontan.  He told us that he would probably only do the Glenn and would wait to do the Fontan, once we new how her lungs were responding.  We discussed the pros and cons, and the plan was that he would decide once he was in the OR and could reevaluate
the pressures in her lungs.
After about an hour our nurse came and told us he had just started, within 20 mins he was back to say the Glenn was done and he had started the Fontan.  Wow this was fast, which made us very happy as the less time she was on bypass and her heart was stopped the better.  Within another 20mins we were told he was done.  They then had to rewarm her body, place some monitoring lines into her heart and lungs, place a chest tube to drain fluid, restart her heart and close up her chest.
After about an hour we met the surgeon, who was able to tell us the news we had been waiting to hear all day, well actually for 3 years!!
Her surgery was done, she was doing great and so far there were no complications!!!
Seeing our girl for the first time was such a relief, it was like letting out a breath you had been holding all morning.
She was already extubated and breathing on her own!!
She was hooked up to many IV pumps and lines
She woke a few times during the day and night, drank some juice and even ate a yogurt, but mostly was sleeping with sedation and pain medications.
I made the very hard decision to go and sleep at the the RMH, last night.  I hated leaving, but the fact that she was looking so good, and was sedated, and with the promise from our nurse to call me for anything, I decided to go.  It is only 3 mins away, and I was so exhausted.  I am very grateful today that I made that decision.  I came back early and she was sound asleep.  She had, had a great night, and I felt so much better, and have been able to be here today when she has needed me.
Chris and I are in shock at how fast things are moving and how well she is doing. 
Today she has had her Fontan line removed, 2 internal lines removed, her foley removed, IV fluids stopped.  She has been taken off all her IV cardiac and sedation drips.  She has drank juice and had 2 yogurts.  She is still on nitrate through the cannula in her nose, which they are slowly weaning, but not rushing because of her pulmonary hypertension.  They are hoping to have it off by morning.
She even had about a 30 min period where she was smiling and almost laughing, you can only imagine how good this made us feel.
These were the big steps forward she made today - amazing
We have also had a few steps backwards.  She started vomiting this afternoon and did 6 times.  She is now refusing to drink and has had no urine out since her foley was removed, so they have restarted some IV fluids.  She is grinding her teeth, something she used to do when we first adopted her.  It is something she did when she was stressed, she hasn't done it in 2 years.  It seems she is doing it when she is in pain, so at least it is helping us tell when she needs meds.
She finally made it out of the bed today for about 10 mins and I got to hold my precious girl, no words!!
Chris and I want to thank you all for the amazing love and support we have felt from everyone.  Your prayers and love carried us through yesterday.
We are so grateful to our heavenly father for taking such good care of our girl, we are in awe that we are on the other side of this day, a day that we were told may never come.  We can not tell you enough how at peace we felt yesterday and how we see His hand in so many of the details. We truly feel we have seen a miracle unfold over the last 3 years.
Here is Lily's gotcha day video - I love to watch it and see how far she has come.

Wednesday, September 4, 2013

Here We Go Again

We leave tomorrow for Philadelphia for Lily's heart surgery, which is scheduled for Friday

Although it was hard when it was postponed 2 weeks ago, you can read about it here  (as well as details on the surgery),we are now very grateful for the extra days we have had together as a family

To enjoy moments like this

and to be blessed to be here for Cole's first day of kindergarten.  When you adopt an older child, you miss SO many of their firsts, grateful I didn't miss this one (thanks Jen for the reminder)

Sometimes things don't happen according to our plan, and in the moment it is hard to see the reasons, but we have seen many reasons over these two weeks. What was such a hard situation has turned out to be such a blessing. Continually reminded to trust in our heavenly Father, who knows and sees way more than I do. 

Please pray for our precious girl, handing her over to the surgeons on Friday will be one of the hardest things we have ever done.  Our peace and comfort comes from knowing, that ultimately she is in God's hands.

We will update regularly on facebook and here, we don't have a time for surgery yet.

Tuesday, September 3, 2013

Back to School 2013

Benjamin is starting high school

Ethan is in 7th grade

Mia is in second grade

Cole is starting Kindergarten

It was a big decision to decide to send Cole to school this year. We were originally not going to, but he is doing so well, was in Kindergarten in China last year, wants to do whatever Mia does and is used to the structure. Also with me leaving with Lily for surgery on Thursday, we felt it may be the best thing. We are honestly not certain, but decided to try, if it is not the right decision we will take him out.  He was very excited this morning though.  Holding my breath today, and just managing to keep my emotions under control, can not wait until 4pm!! Praying for Him today and all my babies.

Lily would have started Kindergarten today, but we are waiting until after her heart surgery!