Saturday, April 28, 2012

8 weeks

We haven't really blogged since Andrew has been home.  Instead we have been doing a lot of adjusting!  He is now 8 weeks old and we've had him home with us since April 5th.  It really is so nice to have him here with the family.  Riley loves her little brother.  She holds his hand in the car, she kisses all over his face whenever she can, she tries to give him pretzels and cheerios, and she also likes to poke his eye from time to time.  I don't know why eyes are so fascinating!

We've already seen about 7 different doctors.  Our first appointment was very overwhelming, but it's gotten better.  My mom is still here, so that has made for an easier transition, plus provided care for Riley. We are so thankful that she is able to stay with us for awhile in this season of life!

So, our pulmonologist ordered a sleep study because he wasn't convinced Andrew was breathing as well as he should be, and he wants to know exactly what is going on when he is breathing.  This will take place on May 4th.  Evidently this will also be beneficial information for his cranial facial doctor as well.  Thursday, Andrew had another ABR since he didn't pass in the NICU.  Sure enough, he needs tubes in his ears to help with the drainage so that he can hear better.... guess it's a pretty common thing for babies with cleft palates.  We are trying to schedule the tube surgery in June and have them put a g button in at the same time so that his milk will go directly into his stomach.  Evidently g buttons are easier to care for and will be kinder to his sweet little nose. :)  These surgeries will take place if orthopedics gives us the ok.  They are going to try to schedule another MRI at Texas Scottish Rite Hospital to take another look at his cervical kyphosis (the crooked place in his spine at the neck.)  They are nervous about Andrew needing anesthesia for surgery because I guess it requires hyper - extending his neck.  Lot's of things for the doctors to consider!  Please continue to pray for healing for Andrew.  Right now we are focusing our prayers on Andrew's spine and palate.

Other news: Andrew went to his first birthday party today!  Our sweet friend Emery Kate turned 3.  She had a princess party.  Riley loved the castle bounce house, and Emery Kate's new playground. Sad we didn't take any pictures!

Also, the Lord answered our prayers to have Andrew home for Easter!  We dedicated Him to the Lord on Easter Sunday with our family and our church family.  We believe he is going to be a mighty warrior in the spiritual realm.  May he intercede for others just as many have interceded for him!  We believe the Lord will continue to display His power in and through Andrew's life!  Many people who have prayed for Andrew have gotten pictures of arrows.  What a great weapon for a warrior! :) It was a really special time!  I don't have a picture, but Christy took some, so I'll post one later. 

Our family also threw us a surprise shower later that afternoon.  We felt SO loved!

The girls also got lots of Easter goodies!

Papa and Mimi built the girls a playhouse!

Andrew and Ragen

Cousin Aiden

Andrew and Uncle Michael

Many of our friends from church also got together and surprised us with a special gift!  A double stroller!  We LOVE it!!!!

Things Andrew looks forward to every day:

dress up with his sister

getting his tube placement checked by his sister

and playing on the mat that the marable's loaned us.

Wednesday, April 4, 2012

April 5th - Andrew's Coming Home!

We are bringing Andrew home tomorrow! Of course we are very excited to have our sweet baby home with us!  We will be able to hold him and see him whenever we want! 
We are also a bit overwhelmed as he is coming home on a feeding tube.  This is not ideal. :) He did worse on his swallow study this week.  Evidently he was so tired he kept falling asleep in the "special chair." He seems to have trouble getting the milk back into his throat, so his swallows aren't timing correctly making the milk not go to the correct places.  (I am sure there is a much more sophisticated way to explain this.) Thankfully, we still get to bring Andrew home, but they don't want us to feed him with a bottle at all.  We have to work with a speech pathologist as well as see the doctor for his cleft palate this coming Tuesday at Children's. Oh, and he didn't pass his hearing screening either, so we also have to go to children's for a diagnostic test ... now the scheduling of appointments begins...we are trusting the Lord will help us find a new routine and rhythm for this season. But we continue to be so THANKFUL that we have a son to bring home!  Thank you Jesus for allowing Andrew to breath well on his own! 

Thank you ALL who have been praying for Andrew!  We hope that you will continue to pray for him in the journey ahead! We are honored that you continue to invest in our lives!

Andrew was tested for a half an hour in his car seat.  They said he loved it.  We got a picture of him today. He fell asleep right when I practiced putting him in.  

Andrew had the two BEST primary nurses! We absolutely loved seeing them love on Andrew.  The days they weren't working it truly felt like something was missing.  Nurse Laurie loved to cuddle with Andrew, and nurse Maggie loved to take his picture and capture memories in his photo album.  Andrew ate up the cuddles and attention, and he always turned his face towards nurse Maggie's scottish accent! They will be missed!

Here are some more of Andrew's visitor's during his stay in the NICU. 
(Aunt Delena and Aunt Janelle's pictures are missing...not sure what happened to them.)
So glad the rest of you will get to meet Andrew without so many tubes!




Grandpa K


Jen and Darren

Uncle Gary and Aunt Kim

Great Granddad

Great Grandmother