Feeding Camp Day 2

A pano of our room until tomorrow.

Alright, a FULL day, literally on the books.  It's been so busy but a good busy and just a good day in general. 

Wyatt interesting way of playing his favorite ipad game.

I'll start with post blogging last night.  We didn't bring our feeding pump from home because we were told we wouldn't need it and we'd use Baylor's.  No biggie.  But once we got here, we realized that they use the Kangaroo pump.  The kangaroo pump isn't very blended diet friendly.  The nurse suggest I just bolus in his night feed with the syringe until James could bring our pump and bags.  In my sleepiness/laziness last night I decided to connect Wyatt's extension tube, plunge in some blend and then just leave the tube connected so that I wouldn't have to mess with him as much while he's sleeping.  Good idea, right?!?  I thought so... until my alarm went off to give him some more blend.  I laid there a minute to "wake up" some and Wyatt wiggled around.  And what do you know, he pulled his tube out.  So our first night at Baylor I pull the biggest tubie mom fail!  I won't make that mistake again!  I promise! 

Our 4am snuggles. A little blurry of course.  That's about how my brain was functioning at the time.  :-)

Wyatt slept great until about 4:30am, woke up and didn't want to lay back down so he got to lay with mommy for a while and then he gladly went back into his pack-n-play and slept until about 6:30.

Wyatt's first feeding therapy session was at 9 this morning.  I was a little concerned with his appointment time but Wyatt did okay.  He didn't get grumpy before hand.  I cannot feed Wyatt any food by tube or mouth when he wakes up.  He can drink water though.  And I can give him 1 oz of blend after a feeding session until his volume goes up in the sessions.  He didn't eat or drink much during his breakfast time.  They were offering small bites (much larger than I usually offer) of a fruit nutri-grain type bar.  Foods like that take Wyatt absolutely forever to chew and swallow.  So, he ate under an ounce but did a lot of work to eat that ounce.

Wyatt in a feeding session.  

We then played outside, walked around and played some more in the room until 11.  Wyatt's feeding therapist did her official evaluation and we got to talk some.  I don't know how much he actually but he definitely ate more than he did at breakfast.

He was refusing a bite so he lost his toy.  He got it back once he took the bite. 

At 11:30 Wyatt has his first session with OT.  His fine motor skills are pretty good for his age.  But he will receive OT to help him with his eating skills.

Wyatt playing.

At noon, Wyatt had his official lunch with ST.  He did good there too.

More playing. 

Wyatt took a nap and poor boy, I had to wake him up to go to his snack at 3.

Right before I had to wake him up for his snack feeding session.

He had another good session.  Dinner was the best of all.  He took in 4.5 ounces of milk and puree by mouth!  Yea1  God Wyatt!  :-)  He did good with the time as well.  That was one of my concerns yesterday.

"Car goes BEEP! BEEP! BEEP!"

As we went through the day and the feeding sessions, I had some concerns.  I also know the therapist have to "figure" Wyatt out.  Test his limits and see what he can do... all the things I already know.  So it hard to sit behind a mirror and not be able to do anything at all.  I do like that they are adjusting already.  The staff has listened to my concerns and I feel very heard.

Wake up, diaper change, find cars to play with and play. :-)

For the time being, Wyatt will no longer receive bites of food.  Just purees and milk.  As much as we want him practicing his bites, we also need him to take in calories and hopefully all by mouth!  The first couple of feeding sessions, his puree wasn't being mixed with oatmeal or oil, both super calorie boosters as well as thickening it to make it better.  I'm also going to have James bring up the spoons we use at home to see what they think.   My only concern now with our schedule is that 3 o'clock feeding.  I don't want to wake him from nap every day.  we'll see how tomorrow goes.

Lots and lots of playing! 

We also change rooms tomorrow and I can really set the place up and make it as comfy and homey as possible.  Not sure if I mentioned this yesterday or not but we'll be in the same room my friend was in and we have half her stuff so it should be good!  :-)

We also ran into Wyatt's pulmonologist, Dr. Sah.  He cares for patients here too.  He seemed happy to see Wyatt and of course asked how he's doing even though he's not officially one his patients while we're here.  :-)  

Good Jeans

Did I says jeans?  I mean GENES!  As in genetics!

We got our genetic testing results a few weeks ago and all test came back normal.  No chromosomal abnormalities.  No syndromes.  Just you're good 'ol random birth defect of CDH.  The geneticist said there really aren't any other test that can be done that would give us any answers.  She did say she'd like to do some more research on the computer.  I have a feeling she needs to find some medical "reason" and I don't need one.  I'm pretty sure we'll never hear from or see her again.

Now on to more good news.... IT'S HERE!  TOMORROW!  THE BIG DAY!!!

At 10 tomorrow morning Wyatt will be admitted to Our Children's House Baylor (OCHB) inpatient intensive feeding program.  James has taken the day off and we'll go down with a load of stuff to make our room comfortable and help pass our time while there.  James will then return home and I will stay with Wyatt.  He'll come visit and relieve me some.  How often will depend on his work schedule.  He will have to travel some while we're there.

Wyatt will be inpatient for 30 days.  That's a long time y'all.  Totally worth it but it's still a long time.  He might get a few hours on Father's Day to leave and celebrate dad outside of the hospital.  I'm hoping anyway!

My hope is to do some small updates each day... we'll see how that goes.  haha.

He's doing really great.  He's totally IN LOVE with cars and he tells me many times an hour how they "Go BEEP! BEEP!"  I love it!  :-)  He's learning more and more letters and animals.  He's able to point to some of them on the wall of his playroom.  Makes my teacher heart swoon each and every time!

Some Mommy goodies from my home group girls! 

Bring on feeding camp!!! 

For Everything There is a Season; Turn, Turn, Turn

A Time for Everything

For everything there is a season, and a time for every matter under heaven:

a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a tie to refrain from embracing;
a time to seek, and time to lose;
a time to keep, and a time cast away;
a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace.

The God-Given Task

What gain has the worker from his toil? I have seen the business that God has given to the children of man to be busy with.  He has made everything beautiful in its time.  Also, he has put eternity into man's heart, yet so that he cannot find out what God has done from the beginning to the end.  I perceived that there is nothing better for them than to be joyful and to do good as long as they live;  also that everyone should eat and drink and take pleasure in all his toil- this is God's gift to man.
I perceived that whatever God does endures forever; nothing can be added to it, nor anything taken from it.  God has done it, so that people fear before him.  That which is, already has been; that which is to be, already has been; and God seeks what has been driven away.

From Dust to Dust

Moreover, I saw under the sun that in the place of justice, even there was wickedness, and in the place of righteousness, even there was wickedness.  I said in my heart, God will judge the righteous and the wicked, for there is a time for every matter and for every work.  I said in my heard with regard to the children of man that God is testing them that they may see that they themselves are but beast.  For what happens to the children of man and what happens to the beasts is the same; as one dies, so dies the other.  They all have the same breath, and man has no advantage over the beasts, for all is vanity.  All go to one place.  All are from the dust, and to dust all return.  Who knows whether the spirit of man goes upward and the spirit of the beast goes down into the earth?  So I saw that there is nothing better than that a man should rejoice in his work, for that is his lot.  Who can bring him to see what will be after him?

-- Ecclesiastes 3:1-22

As we walk through life, we walk through seasons.  Not necessarily your traditional Summer, Fall, Winter and Spring but seasons of stuff.  I don't know.  Good, bad, fun, hard, easy, happy, sad, ect... Sometimes we mourn the seasons turning and sometimes we rejoice and are excited for the change and sometimes it's probably a little of both!

Our small little family is turning a to a new season of life!

...No friends, I am not pregnant.  God has not given us the green on that one just yet but we do have some big news... and no, we are not moving.  PTL!

James has accepted a new position with a small business strategy consulting firm called Thought Ensemble.  He's pretty excited about it... as much excitement as James will show anyway.  lol.  It's an opportunity for him to really grow and learn a lot from some really smart people.  And to be honest, I think he misses the consulting part, getting to change things up from time to time.  He'll work from home or travel, on an airplane not around town, to the client.  I'm sure it depends on the client and their needs.  Both working from home and traveling will be an adjustment but one we're welcoming.  This is an answer to prayer for our family.  So, we are quite grateful.

James has one more week at GameStop and then he'll jump right on into his new, exciting roll.  If you're interested, he'll be blogging for work.  It's not personal at all but if you're business minded, you might enjoy his thoughts on different work related matters HERE.  Wyatt and I should get to travel with James some here and there.  I'm sure each new city will peak my interest and we'll go along for the ride!  I hear one of the cities he might venture to is Boston... we've never been there before!

So, there exciting news numero uno...

What else is there?  What could be more exciting than that?  Oh you know, nothing much except that Wyatt was evaluated for Baylor's Our Children's House inpatient feeding program this morning.  No big deal, right?  Yeah, right!  It's a huge deal.  We've been praying about this evaluation for a little while now and we haven't been receiving any therapy services since Spring Break (That's early March for you people up north!)  Way too long.  I've been working with him but this is not my background and I'm sure I give in too easily.  We are so happy to continue this process.  He does qualify and should receive feeding, language and occupational therapy while being in house.  They've also requested he be evaluated for physical therapy and to get a swallow study done before our admit date.  We don't have that date just yet though.  They seemed to be very on board with fast tracking his enrollment though, which I totally appreciate and am thankful for.  We have until the end of June before our insurance changes over to a new company and a new deductible and out-of-pocket max!  That and he's ready.  No holding him back now!

Wyatt will be an eater of real food.

So much joy, sweat, blood, tears and vomit in that one sentence.  We've worked hard getting him to a point where we can give him this big push into being a more successful eater.

#futureeater

I don't remember if I shared much about the actual program when I blogged previously.  It's a 30 day program where Wyatt and myself (with the occasional break from James) will be with him day and night.  Wyatt is not allowed to leave the grounds and I can leave to run errands as long as someone is there.  He'll receive feeding therapy 4x/day and OT and maybe PT- not sure of the frequency just yet.  The rooms are hospital rooms with hospital beds.  Some rooms have their own bathrooms, some share with the neighbor (think Jack and Jill) or the dreaded hallway bathroom... I'm hoping for one with one in the room.  We visited our friend Asher and his mom, Robyn last week so I've seen the rooms and walked around the place and it's all totally doable for 30 days!  We'll bring Wyatt's pack-n-play for him to sleep in and we'll bring some other items from home to make it more comfy.  We will also be able to have visitors and from what I hear, they really help the time to go by.  :-)

first Easter egg hunt

Please pray for God's timing, our patience (mine really,James is pretty patient) and just peace with all the change happening at once.  And for Wyatt and his team of therapist and doctors once we are admitted.  Just for knowledge in knowing how to help Wyatt be a successful, lifelong eater.  

On another note, we are coming out of flu/RSV isolation!  Yippie!  We, of course, will still keep our guard up.  I'm not sure if that will ever come down.  Maybe... someday.... We love the warm, spring sunshine.  I even love the unpredictable thunderstorms and the call of the water...swimming!  I can only hope Wyatt shares this love, which I think he will as much as he loves his bath time!

So, as you can see, our season is changing and we are excited and ready for it all.  :-)

...now if we could just get this kid to love nap/bedtime... you'll miss it buddy, I promise!

7 Months, 1 Week and 2 Days... or 224 Days

However you look at it, I am thankful for each and every moment we've had with out handsome son, Wyatt.  God has really been generous to our small family.  I cannot believe it's been as long as it has and at the same time, it's hard to remember what life was like before Wyatt was here.  Well, I do remember what it was like to go to work every day and I don't miss that 5 am alarm one bit.  Haha.  Loved my job and loved and miss the kids but I'm doing what God built me to do, and that's being Wyatt's mom and James' wife and taking care of them both.  

So, how is Wyatt doing?  He is doing great!  Let me update you!  I'm just going to break it down by doctor, seems to be the easiest since we have SO many!  (By the way, if anyone here in the DFW area ever needs a peds doc, let me know, I might be able to recommend one or ten.  :-)  

Pediatrician:  She feels like Wyatt is doing good.  He is gaining weight like he should.  At his 6 month appointment he was on his growth curve, which is good.  He's still in the 3-5% for weight and height and <3% for head circumference with his actual age (from the day he was born).  BUT... with his adjusted age (from his due date) he's in the 5th percentile for weight, 50th for length and still 3rd for head circumference.  These numbers seem disappointing BUT they aren't to me.  Wyatt is on his curve and slowing closing the gap... it's a gigantic gap but it's still on the up and up!  :-)  Think positive right?!?  We go in for a weight check next week!  Yippie!   We are also watching his head shape.  He started to get a flat (and bald) spot on the back and so we've tried to keep him off the back of his head and sleep him on his side and stuff like that!  :-)  

Pulmonalogy:  (lungs)  We saw Dr. Sah in January and he said Wyatt was looking good.  He wouldn't take him off oxygen because it's still winter/flu/rsv season but he did say we could take his cannula off while he's awake as long as he sats good!  And godo news, he's staying above 92!  That's the goal. I usually lay Wyatt down for bed at 7 (sometimes earlier and sometimes a little later- you know how it goes!) and Wyatt does not like me putting that thing in his nose.  If he is awake, James has to help me.  he doesn't throw a fit or cry or anything, he just jerks his head back violently and it's super difficult and I feel like I am scratching his little nose.  :-(  So, I wait until he's sound asleep and then he just kind of flips his head back and forth and I get it in and taped down without him waking up.  :-)  We return to him in April and I fully expect him to take Wyatt off oxygen all together or to as "as needed" basis.  This is what I am praying for, for sweet Wyatt.  :-)  

I also cannot remember if I've ever mentioned this before or not but we visit this office once a month for the RSV shot.  We have ONE more left... that is super exciting because that means RSV season is ALMOST OVER!  Isolation restrictions will be lifted and we will just proceed with great caution! :-)

Cardio:  I don't remember if I've updated since the last time we went to cardio because we have not been since December   She said she didn't need to see Wyatt for four months!  That's always good news in our world.  Just to recap, she felt like his PDA (small hole) is small and maybe even a little smaller.  She didn't feel, at the time, that he needs surgery and just wants to continue to watch to see how it does.  We were good with that.  I am hoping and praying he does not need that surgery.  It's one of a potential 5... I will say, I have noticed that his regular heart rate has slowed down quite a bit since we've come home from the NICU, awake and sleeping.  

Urology:  I haven't talked about this one online at all because I felt like it might not be necessary and wanted to save Wyatt from any potential "embarrassment" in the future but now it's kind of important and we've been transparent thus far, so here it goes... When we had Wyatt, I was in a recovery room (for 5 freaking days... not a normal postpartum room) and a NNP came in and said, "XY, it's a boy!"  James and I didn't say anything at the time but we were like, "Uh, duh! We've known that since 16 weeks..." but she continued to tell his that his testicles had not dropped yet so they ran test just to make sure he in fact was a boy and that nothing else was wrong... thankfully, he is truly a boy.  :-)  Then later on, they still had not dropped and they weren't sure if they had developed so they had some blood work done to see if they were in his little body somewhere, and again, praise God, they were.  Fast forward to now, they still have not dropped.  They can be felt and they are close but not close enough and the urologist says that they would have been in place by now if they were going to move.  So.... this news = surgery.  The doctor made it sound like it's a pretty standard, I can do it in my sleep thing.  I'm hoping that's exactly what it is, in and out and never a problem again.  He did say that it could be one surgery or up to three.  I guess he doesn't know until he gets in there.  He also said that when both testicles fail to descend, something has gone wrong.  He said there is a chance Wyatt could lose one of them.  Please pray this does not happen.  Also, there is a 40% chance for infertility.  Again, please pray this is not the case.  We of course wouldn't know about the possible fertility issues until he (hopefully) gets married and tries to have kiddos with his wife.  Surgery, for the normal kid would be an in and out and recover at home procedure but with Wyatt being Wyatt and having to go on the ventilator  he will most likely have to be watched overnight.  James and I are also hoping that being put back on a ventilator, for any amount of time, doesn't give us any set backs with breathing or eating!  

ENT:  Wyatt had a sleep study done in January.  They goo-ed and taped him up good.  It was so gross but Wyatt, as usual, was a champ and just went with the flow.  Per those results, Wyatt had a nasal scope (I am totally not sure if that is what it is called or not, but that is what they did- stuck a camera scope thing down his nose, while I held him in my lap) and he needs a surgery.  His adenoids are a little large and he has some floppy tissue on his voice box.  She is going to remove both of these things.  The adenoids can be problematic and cause throat and ear infections and the floppy tissue blocks some breathing.  We were concerned with these results and wondering if this was a "neccessary" surgery but anything blocking any breathing, I feel like is important.  I want to give Wyatt every advantage in the lung department I can to help him with growing!  This was also made out to be a "I can do it in my sleep, no big deal" surgery.  It's an hour long and for a normal kid, recovery would happen at home but again, we aren't normal and Wyatt will probably stay over night to be watched.  We have the same prayer request as for urology- that this does not create any backslides in his progress or development.  :-)  

The good news for both these surgeries is that the doctors are coordinating so that they can be done at the same time and Wyatt only has to be put under once and on the ventilator once!  Praise the Lord.  As of right now, surgery is scheduled for Tuesday, March 26th!  :-)  

I also want to add that no matter how "minor" or "easy" or "regular" a doctor says or portrays a surgery- I'm not a doctor and they are all a big deal in my book.  If you've never sent your child, let a lone, you infant back into surgery, you have NO idea how scary it is.  I've watched Wyatt be wheeled away from me at day 5 of life and day 97 of life.  Neither of those times were easy.  It was the exact opposite.  The hardest thing I have ever done in my life and I can't imagine it getting any easier, ever.  Thankfully, we believe in a God that is in control of all things and He gives us strength.  

Ophthalmology: (eye surgeon- not regular eye doc) We, well, mostly James, noticed that Wyatt's eyes often were not centered when looking straight.  I had to go back and look at pictures and then, I too noticed what he was talking about.  Also, a while back when we went to the ER, the doc mentioned we should bring it up at our pediatrician's the next time we go in.  So, we did and she sent a referral.  That doctor just want to watch and see how things develop.  We go back to her in early May.  If it's still a problem she said something about trying out some glasses first for a few months and if that doesn't correct the problem, then it's require surgery.  Hopefully that's an easy one like LASIK or something... I don't know, I didn't ask.  We'll cross the bridge when and if we get there.  

GI:  This was a big appointment.  Lot's happened with the dietitian here.  But first, the fun news!  Wyatt, in a matter of 20 days gained 19.5 ounces, totaling 14 pounds 2.5 ounces!  That's wonderful!  The basic goal for him was an average of half an ounce a day and he doubled that!  So thankful!  :-)  He, at the time measure over 26 inches in length!  This was all at the beginning of the month, so who knows where he is now!!!??!!!  His GI doc is awesome.  We really like her.  She's is realistic and positive and loves Wyatt.  

I got to spend a lot of time with the dietitian, which was needed and we got to really work on his feeds.  Wyatt hadn't had an increase in his daily milk intake since before we left the NICU.  She was actually surprised he had still been gaining like he had.  And she asked how I felt about the way his schedule was set up- always nice to have input and to not just be told.  We left his night intake at 60% of his daily feed and continuous but just upped the rate.  She was aggressive and I like that.  She had us go up 1 mL an hour a night until we got the feed down to 9 hours instead of 11.  We start at 10pm and it ends at 7am now.  That is nice, it's when he wakes up.  So, now instead of trying to keep him still for basically 2 hours so he doesn't throw up, I get to get him ready for the day when he wakes up!  It's really nice.  Makes our start much smoother.  For those of you on a g-tube, our rate is 43 mils an hour, total volume 385 mils.  As for the day time feeds, she wanted to be aggressive too!  I've gone up 1 mL an hour each day instead of every few days or so.  He's done great with it.  One time, I held for a couple of days since there was a small increase in throwing up.  She also wanted to increase the total volume, from 85 mils a feed to 100.  She said to just take it up a little at a time.  We're at 95 mils right now.  Wyatt is up to 62 mils an hour and going up!  :-)  I would like to see him take his entire feed in an hour or less... we'll see if we can get there.  I'm praying.  :-)  

Wyatt is also eating cereal (rice & oatmeal) and purees.  I bought a baby food steamer/processor (thanks for my generous MIL) and made some but decided to wait to continue to make more.  I have bought some of the organic pouch baby foods to try out different flavors.  That way I don't waste time, money and energy if he won't any of the food.  It also saves freezer space.  :-)  I started with veggies but have quickly moved on to more fruits because it's not about "nutrition" right now, it's about him learning to eat and knowing what it's for.  We'll tackle the tasting everything for when he actually begins taking in enough volume to subtract from his milk feed.  We are far, far away from that day- but we will get there!! 

Wyatt is still receiving Speech and OT 2x a week.  His OT isn't sure he'll qualify for services when she reevaluates him... that's a good and bad thing.  Good that his development level gap has closed but I love watching how she works with him.  It tells me what I need to do day to day!  I'm sure we'll have speech for a long time.  :-)  

SIX MONTH PICTURES:

(January 12, 2013)

  

SEVEN MONTH PICTURES:

(February 12, 2013)