Quick Update!

There is so much to say, and not very much time to say it all, so I will make this a quick update and write more later.  We would appreciate your prayers for Andrew on July 2nd.  He is going to Children's at 6:30am for surgery.  He is getting tubes in his ears, and a g-tube.  (Right now he has a tube that goes into his nose to feed, they are going to move it so it goes directly into his stomach.) This is great because we won't have to check placement anymore, and his cheeks can heal, but, it is still far from natural!!! Still hoping to see healing on his palate...
The ear tubes are because he evidently has fluid in his ears, so everything is sounding very muffled.  He didn't pass the ABR, they are thinking this will help greatly improve his hearing. The ear tube part of the surgery is very minor, our biggest concerns are him being put to sleep for a long time, and worrying how well he will be able to breathe after surgery since he is already "labeled" with narrow airways.   Please pray!  


We also met with a neurosurgeon this week.  He wants to have another MRI on Andrew's neck.  He looked at the one form the NICU, then the one that was done 2 months later, and there was improvement, so he wants have another one now that Andrew is 4 months old.  He mentioned possibly having Andrew wear a brace.  This was discouraging.  I can't imagine my sweet boy being confined even more!  (He wouldn't even be able to move his head from side to side if he had to wear a brace!) But, if it comes down to that, it will be worth it to protect his spinal cord.  Lord, please continue to heal Andrew's neck. Did I mention that he wants to have this MRI done on July 2nd while Andrew is already asleep.  Which means he will have to be asleep for an even longer period of time?!!


On a lighter note, we bought a house.  Our very first home.  We also gutted the kitchen, and decided to move a few walls around.  We are scheduled to move on July 7th.  CRAZY!!!  We have experienced an overwhelming amount of support and help with our house first and foremost by our family.  They (Kenten's parents, aunts, and uncles) worked LONG days painting, and cutting branches, and tearing up floors, and clearing shrubs in the nasty Texas heat.  My sweet mom helped watched the kids for a week, and my dad helped Kenten build new walls.  Our neighbor across the street is a contractor, and he has been sacrificially working with Kenten to help him get all this done correctly.  We are so blessed.  These same neighbors have cooked us a meal every Wednesday since Andrew was born!  AMAZING! Thank you Lord for your provisions!


Sweet Riley celebrated her 2nd birthday, and is going to finish up swim lessons this Friday.  


I was suppose to talk with Andrew's pulmonolgist  about Andrew's sleep study today, but when I got there I learned that he was an hour behind schedule, so I told them I'd reschedule for after Andrew's surgery, and asked them to fax the results to Children's for his pre-op charts.


We are very tired, and really taking things one day at a time right now.  Thanks for praying!  It makes all the difference!

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.

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!

Robin

Paola

Jen

Grandpa K

Becky

Jen and Darren

Uncle Gary and Aunt Kim

Great Granddad

Great Grandmother

Theresa

Jason

LeeAnn

Almost Home!

Andrew has been moved to the Continuing Care Nursery. This is the last level of care before he goes home.  He is no longer hooked up to monitors.  All he has is a feeding tube.  We are continuing to work on feedings. Now they are feeding him 3 times a day with a bottle for 15 minutes to help his muscles develop.  We have to hold him in a special position to make sure the milk is going in the right place.  They are going to conduct another swallow study next Wednesday to see if they notice improvement. (The last study showed a bit of aspiration when he was in a cradle position.)  The nurse practitioner who spoke with us today made it sound like we were going to get to take him home by the end of next week with a feeding tube!  We are not going to get our hopes up just yet, but we can tell she is really pushing toward getting him home sooner rather than later - that's great!!!  We would LOVE to have Andrew home for Easter Sunday, which also happens to be baby dedication Sunday at our church!  First and foremost we want Andrew to be doing well with his feedings, so please continue to pray that he with have a strong suck and swallow and that the milk will go exactly where it is suppose to be going!  Pray that they will see improvement, and know which nipple (they are working with 2 different kinds) is best for Andrew when they conduct the next swallow study so that they will have greater confidence in sending him home!

Also, in case you are curious - Andrew got circumcised today. :)  They said he did great during the procedure.

Riley got to spend a lot of time with Papa this weekend while we were at the hospital.  She LOVES his backyard!  He let's her water the flowers and pick and eat berries!

Feedings

The speech therapist did a feeding study on Andrew today to see how he was handling his food when drinking from a bottle.  It showed when she fed him on his back he aspirated a little.  Obviously, we do not want any aspiration at all, so she tried feeding him on his side.  No aspiration this way, but some of the milk went into his nasal cavity.  She is going to work on different positions tomorrow to see what works best for Andrew, then we and the nurses can start feeding him.  We were a bit discouraged, as the process seemed to slow down again, but then we thought about how scary it was when they took the breathing tube out of Andrew...we all thought they was going to have to go back in as they masked him, and he turned white....but the Lord intervened and Andrew made a speedy recovery after that VERY hard day.  Do it again Lord with his feedings!

I dressed him in this cute outfit that I got when I was out shopping yesterday.  Button down onesies are the easies style for him right now.  They are gentle on his neck/spine, and the wires can go though the holes. :)

I changed his diaper, took his temperature, and tucked him in before I left!

Breathing

We are so thrilled to write that Andrew is breathing on his own!  Yesterday he did so well on the nasal cannula that they decided to take it off!  We held Andrew with no tubes in his nose.  It was so sweet to get a better look at his adorable little face!  Thank you Lord!  That was a processes that went by MUCH faster than the doctors expected.  We are now on step 2 - feeding.  The speech therapist came in and evaluated Andrew today.  She began one feed with a pigeon nipple (due to the cleft pallet.) He was able to drink 20 cc's which is about 6 teaspoons from sucking on the nipple.  They thought that was very impressive for his first time.  The goal for getting to take Andrew home though is that he takes all of his feedings by bottle.   That is 8 feedings a day, about  67 cc's a feeding.  Please pray that he will continue to impress/surprise the doctors and get this mastered quickly.  Also pray that he will not aspirate -that he will drink the milk well and it will go down his esophagus into his stomach. We would LOVE to have Andrew come to church with us on Easter Sunday - before would be even better!!! Thank you all for praying - it makes all the difference! We believe the Lord is just getting started revealing HIS POWER in and through Andrew. 

A Great Weekend

This weekend Riley celebrated St. Patrick's day at playgroup by decorating cupcakes, while Andrew got moved into a crib.  We also got to give Andrew a bath and put some clothes on him.  We chose orange for his first outfit since it's the color for breakthrough!

When we went to visit Andrew today they surprised us by switching his c-pap to a nasal cannula!  He is much more comfortable now, and he can sleep on his tummy. We pray that he continues to handle it well, so that we can start working on feeding him without a feeding tube. When we get that down, it sounds like we can bring him home!

We also spent our last day with Nala and Granpa K at the Dallas Arboretum.  It was beautiful!  Riley had a great time running around and walking through the artist houses. Can't wait until we get to bring Andrew with us too!