Sunday, July 8, 2012

life (post at the bottom)

Rachel loving her baby after surgery, the staff was so sweet to let them come in even though they were not of the permitted age. They knew Gracie needed them more that anything else.

Finally, Apple juice!

The pillow says...My heart was touched by HOPE PSHU (pediatric surgical heart unit-ICU)

Finally home, playing babies!

No, it's not halloween and Yes, Rachel is dressed like a witch.  Madelyn, the budding make-up artist dressed Rachel up for play.

Feeding their babies in the toy room.

Waiting for the parade to start.

These pics are out of order... The big girls trying to keep Gracie busy with sticker books. All the girls were with us during Gracie's 17 days in the hospital...GOD bless the Ronald McDonald House!!

My boy at work...Yes, his eyes are closed. :(

Playing cards in our room at the Ronald McDonald house.

Linzhi catching a movie at the RMH

Ok, back to home and swimming!

At the fair on the ferris wheel.  Linzhi and I are across from them freaking out!  I hate heights!  CJ, Rachel and a couple of our church friends were in another cart. 

Right after her scary tachycardia episode.  Precious baby, trying to smile.

Rachel and Madelyn going stir crazy at the RMH

Miss M swimming.

Rachel Cate

Madelyn Grace

Linzhi Rose

At the fair...best friends!

The other night, the girls were eating dilly bars from the DQ, we have to help Linzhi eat as she cannot hold the stick.  Then I got an idea of cutting a slit in the top of an empty coffee can, I then filled the can with a zip lock bag of sugar to keep it steady... WALLAH!   We're always thinking up new ways of doing things around here!  She can also eat a corn dog this way...well, anything that's on a stick for that matter. :)

Madelyn and Gracie Faith

This was a sweet day, all my babies in the hospital room.  Trevor took care of things at home (an hour away) but twice he was able to come up and help me with the girls at the RMH and visit Grace.

Going to pet therapy at the hospital and not happy about it.  This was her look the entire time we were there. 

Sisters holding hands, Gracie on the left, Linzhi in the middle and Rachel on the right, holding Linzhi's hand steady. I love how they love each other.

Praying over Gracie, my heart was full.
I have tried to blog over the last month and the words just didn't come to my mind.  Since our plane landed from China on April 18th, life for our family has been in fast motion and as grateful as we are that the we are now behind the first surgery, we as a family are so happy for to have some "normal" life this summer.  As life is, in a few weeks we'll be going through another adjustment as my first bird will be leaving the nest.  Trevor is off to Columbia College mid-August.  As happy and excited as I am for him, my heart aches when I think of him not being here everyday, not seeing his big (size 13) shoes at the front door, the sound of his voice in the house or finding he has eaten my leftovers that I had planned to eat for lunch the next day, you know...little things that make him special to our family.  *sigh*  I cannot believe we're here, it's time now for him to spread his wings and start his life.  I am so grateful he's a Godly young man that loves the Lord, it gives CJ and me much peace in knowing that about Trevor...So I will pray for him to keep close to Jesus as I know Jesus will stay close to him.  <3

Gracie had her bilateral/bi-directional glen operation done on May 24th.  The surgery was a beautiful success!  As she was healing she hit a few bumps in the road as she experienced two episodes of tachycardia, one being severe.  Poor baby, had a panic attack as her heart rate went to 230 for 1.5 hours.  CJ was with her for the first mild episode and I was with her for the biggie.  CJ was across the street with the girls at the Ronald McDonald house as he waited for my sister to arrive, as soon as she got there, he ran over to us.  By the time he met us, she was back is PSHU (Pediatric surgical heart unit-ICU), before CJ arrived, I laid my hands on her head and went straight to the throne of God, begging to snap her out of this.  I had been praying all the while but all of a sudden, I found strength bursting out of me calling to our heavenly father to save my baby and just like He snapped His mighty fingers, she was out of it and back to a better heart rate.  The attending heart physician looked right at me and said "I think mom just flipped a switch", my reply...I must have through my prayers"... I had kept my cool, until that moment and then everything hit me and tears flooded my eyes as I looked at my angel laying there, exhausted, scared, depressed, most likely needing her China mama, sweaty and shivering from all her little body had just gone through.  I felt total peace knowing Jesus came to the rescue.  After a few days, we were able to move her back down to the telemetry unit, within a day of being there, Gracie's arm swelled three times her normal size, she had an IV in that arm which was not being used so CJ and I asked the nurse to take it out and page the attending to come look at it, which she did.  After an ultrasound, it was discovered miss Grace has a blood clot in a superficial vein.  *sigh*  They immediately started her on heparin (blood thinner) through her other IV, she would remain on this drug for 3 days, then they switched her to an oral drug called cumodin but once we met with the hematologist, he suggested injections of a drug called lovenox which she remains on to this day.  So mama and daddy, give our little one a shot twice a day for the next 2 months after which, she will have another ultrasound to check on the blood clot.  With all of this, the glen operation was a success, she will have her second surgery (fontan) in the spring of 2013.  Basically, before her surgery, Gracie has one common valve (no tricuspid or mitral), so her blood mixed, so the lungs which needs blue blood got a mix of both and her body which needs red blood got a mix which of course is not a good thing.  So the Glen operation that took place in May, Dr. Ilbawi, disconnected her Superior vena cava (she had 2-normal anatomy has 1) from her right atrium, then connected to her pulmonary artery, so now the head and neck flow drains directly to both lungs giving it the blue blood it desperately needs....Clear as mud?  The Fontan, next spring will plug in her lower body in to get the red blood it needs, as of now, it is still getting the mixed blood.  There are a couple of other things that will need to be repaired, like the whole that is present in the center of her heart.  To meet her, you would never know what she has gone through or what still needs to take place.  She is a mighty little warrior and fears NOTHING except a thunderstorm, she's tough as nails!  She is learning about Jesus daily, she loves to play babies with Linzhi, LOVES to swim, ride her bike and new scooter that Grandma and Grandpa bought her and Linzhi from a garage sale, she is loving life, loving her sisters and brother, opening up to her mama and daddy.  She won't call us mama or daddy, she doesn't call us anything yet, although I hear her talking to the girls and she refers to us as mama and daddy behind our backs...too cute!  We'll get there, that is the least of our concern for our baby.  She's so loving to all of us, hugs and kisses and telling all of us she loves us...that's totally enough!  We put her China family pictures in frames which adore her shelves in her bedroom. She will look at them and kiss the frame and then off to play some more.  Her grieving has been minimal, but she's does experience it here and there, she is not afraid to ask Madelyn about her experience leaving her China family, in fact, Madelyn said to me one morning "Gracie came in my room and we talked for hours about China and being adopted".  Madelyn needed it just as much as Gracie.  See how Jesus works?  He always knows what we need and placing these two together was all His design.  All my girls are doing wonderful, Rachel and Madelyn are the leaders of the pack.  They tend to do their own thing together, as much as they pick at each other at times, they are very tight.  Linzhi and Grace as we loving refer to as "the littles" are two peas in a pod!  They love everything baby and play for hours with their baby alive dolls.  it's so precious for us to see Linzhi finally having a partner in life.  Rachel and Madelyn, of course played with Linzhi but the age and maturity differences posed challenges in finding common interests but again, God had a perfect plan for Linzhi and Gracie and now, I have two sets of girls...the bigs and the littles and I love every exhausting, minute of it!  I kid, It's not exhausting but at times, I will sit there and look at them and think to myself...I am totally out numbered!  With adding Grace, CJ and I both decided it's time to start giving the girls more responsibility and they all stepped up to the plate, not everyday they are happy to help but they do it anyway which teaches them, we all have to work together for our family. 
I Can't believe we are already starting the second week of July!  Linzhi, my sister and I are leaving for Delaware on July 22.  On the 23rd, Linzhi Rose is getting fitted for her WREX (robotic arm devices), our prayer and hope is for this to give Linzhi what she needs most, assistance in eating, grooming and day to day help for all the things people with one or two normal working arms take for granted.  She never complains, she even tells us she loves her hands, Rachel, in fact,  ADORES Linzhi's hands/arms and tells her all the time.  We are all so excited to see how this will help our precious girl!  I will be posting from Delaware with videos and pics! 
This coming week, Trevor, his friend and I are heading to Chicago for his orientation at Columbia.  We'll see his apartment and possibly meet his roommates.  It will be a fun day for sure but Please keep me in your prayers...I AM NOT READY FOR THIS!!!!  :(

Have a blessed week!
Amy

5 comments:

Sandy said...

Oh Amy!!!! What a wonderful post...you know how much I have wanted to see pictures and hear about the girls....You do such a great job with both....Again, wish I lived closer so I could come and visit...Give the girls a hug from me.
Love from NC,
Your cuz,
Sandy

Lori Panganiban said...

Loved the update, thanks for sharing! God's blessings to you and your incredible family!

Sarah said...

Thank you, thank you, thank you for the update! It was such a faith builder to hear and see so many answers to prayer. God has good in store for all of you. Thank you for stepping out in faith to bring Gracie home.
I am also really eager to hear about Linzhi's hands in light of Gabriel having the same diagnosis.
Please keep me posted. Email is probably better for me but either way I will be checking back in to see how you all are doing.
Sarah Risley
jhrisley at gmaildotcom

Julie said...

I'm so happy that Gracie's surgery went well. We just passed the two year anniversary of my son's heart surgery. He is doing great! He even has his first job this summer, lifeguarding at our local pool! I love that!

So glad to get the update on your family. May God continue to bless you all.

Jean said...

Hi Amy! It is so good to get caught up on your family! So thankful that Gracie is home and has already had a surgery. Praise the Lord!