A busy life is a normal life....right?

A couple of weeks ago, our pediatrician recommended that we go to a clinic called Austin First Steps.  Its a place where they follow and track your child's development.  They mostly do premie babies, but because Brody is such an AWESOME case, they wanted to follow him as well.  It was a 2 hour apt, and Brody showed them who was boss.  It was so funny to watch him.  One thing that the Dr. did was, pick up a bell and ring it and then she set it down in front of him to see what he would do.  With out hesitation, B grabbed that bell and gave it a nice couple of rings...and looked at the Dr and with his eyes, he silently told her "now what, lady"  and then started banging the bell on the table.  I wish everyone could've been a fly on the wall, because I really am not bragging.  I was just so surprised he was doing all these little tricks and milestones.  So after discussion and play time with the Dr.  his test results came back as NORMAL.  That means, he is doing everything a 9 month old should be doing.  The only thing that was below average, was his speech and gross motor skills.  We knew speech would be, well, because he has a trach and doesn't make noise or eat.  And his gross motor was because after his skull surgery, they put him on "rolling over and tummy time restriction" so he lost most of his arm strength.  Our physical therapist has been working with him, since we got the go-ahead a couple of weeks ago, and he has been slowly regaining his strength.  With all that being said, my heart smiled and a sigh of relief was released.  It takes a huge part out of you knowing that your baby is different, but knowing that he is on track, just fills me with a sort of feeling that is hard to describe.

Another topic of discussion was his feeding and calorie intake.  Bottom line is, this milk factory is slowly but surely drying up, and Im so sad about this. I still pump 5x a day and am trying my hardest to keep it going, but its just not happenin.  They want him to be getting about 260 mls of breast milk 4x a day but I'm only making about 150mls every pump.  So the conclusion was to supplement the missing milk with formula.  While that wasn't my first choice, I am ok with it.  I don't feel the pressure and stress of trying to make enough milk, and I know he is still getting the majority of breast milk.  He has been doing very well with our speech therapist and eating baby food much much better.  All I can ask for is progress and he is doing just that.  He is pushing through and pfighting on.

With all this excitement and progress, we thought it might be time to start introducing him to more kids and more play time.  Besides from the occasional visits from Gabe's niece and nephew, he has had a couple of play dates with his "cousin" Southern and his cousin Gabriel (who are both about a year or so older), while us adults were visiting, but other than that, he has never been around other kids his age.  I thought that maybe taking him to Gymboree play groups would really get him on a whole new level of learning.  I looked into classes and they had a "first class free" pass, so I signed us up and took him yesterday.

My mom drove in from SA to go with us and capture his big moment.  I am not really sure how to explain how he did.  I don't know if he was just extremely tired from therapy and not napping, or if he was just in shock from the different atmosphere.  There were 3 other kids ranging from 7-9 months.  And Brody just had this blank stare on his face like "WHAT IN THE WORLD IS THIS PLACE".  We sang and clapped, and stomped our feet.  Worked on crawling and moving, and playing soccer.  Bubbles were blown and the parachute was flown.  But still the same ole blank stare came from him.  It wasn't until we were finished putting our shoes back on and walking out the door, when his smile came back and he was clapping his hands.  So I guess he was excited to leave.  Little stinker!  The kind teacher offered another free class next week, to try it out again.  Hopefully with a nap before, he will be a little more excited and involved!  We shall see.

Here are a few videos of what we did.

Using the walking cylinder

We got our own bubble to pop

Trying to get him to crawl up the ramp....not happen' mom

(sorry for the quality of the videos, I am trying to work on them)

Also on our exciting agenda of trying to be "normal", is our first family trip to the beach, in July.  We attempted to go to the beach a couple of weeks ago while visiting my aunt and uncle in Galveston, but matter of the fact is, we were total house bums and just enjoyed being on their deck on the bay.  But this time, Gabe's parents and my parents are taking him to the actual beach at South Padre.  We are going for Gabe's cousins wedding, but making it a long weekend of family time before Gabe's busy work travel season ensues.  While I am FREAKING out about the mixture of sun, sand and a trach, I am trying everything to remain positive.  Im sure it will be better than I am imagining, and while I am excited about family time and putting his feet in the sand for the first time,  other things are going through my head.  So I guess its time to start making our supply packing list, and getting things together.  

One of his beach outfits from Grandma

Wish us luck.  

Much love to you all, and hope everyone is having a busy normal summer!!!

Love, 

-S

http://www.gofundme.com/58c7p4

The fear of the "unknown"

There is a lot that goes into being a trach baby Pfamily.  There is equipment, monthly supplies/organizing, daily cleanings, weekly trach changing, nursing care, emergency supplies EVERYWHERE, travel equipment that goes everywhere you go and of course, suctioning secretions as often as needed.  Brody is not one that needs a lot of suctioning.  Think of it as blowing your nose.  Some people do it all day every day. Some, in the morning when they wake up.  Some, only when they are sick.  Well same goes for a trach baby, and suctioning is like "blowing his nose" and Brody falls into the "when you wake up" category.  He usually has really icky secretions in the morning when he wakes up, and thats it.  During the day, we maybe suction him once or twice, and usually NEVER in the middle of the night.



Tuesday during the day, he just wasn't himself.  He was fussy.  My mom was here for her weekly visit, and that usually involves lots of cuddle time.  When I called to check in from work, she said that he had been asleep in her arms for over an hour!! He never takes that long of a nap.  When I got home, about 2 hours later, he was ready for another nap and just cranky.  We chalked it up to teething, because he was also drooling like there was no tomorrow.  Then, later that night, he started spitting up his food.  I knew from there it was going to be a LLLLOOONNGGGGG night.  And sure enough, I got up about 3 or 4 times because I heard him having difficulty breathing through the monitor, and his secretions were horrible, every time.

Needless to say, it has not been a good 2 days.  His secretions are so think and green, his cough is horrible, and for the first time since being born, he is needing the oxygen machine at home to help him breathe.

Then it got me thinking...  What if this is the "trachea sleeve" issue.  Is this what happened to the other 12 kids that had this issue?  Is his trachea going to collapse?  Is it closing?   Is this the "unknown"?  The fear has me so worked up.  Being 1 of 13 in the world with the "trachea sleeve"  means that there is not much literature on what happens.  We have no signs to look for, other than difficulty breathing.

 Im scared.

We took him in to the doctor yesterday and his diagnosis was 1. Ear infection 2. Respiratory infection 3. Tracheitis (inflamation of the trachea).  He is on a pedialite diet, because he cant keep food down, (which means I can build my milk stash up some more...bonus for me) and like I said earlier, he is using the oxygen machine at home to help him breath. He is also getting albuterol treatments every 4 hours. His oxygen stats are ALWAYS 99-100, but they have been in the low to mid 90's, which means he is working extra hard to breathe, aka difficulty breathing!  My heart has been racing for 2 days, and Im trying to keep calm.   But the fear of the unknown is taking over, and now I am getting sick.  I went to bed at 8pm yesterday. And just feel mentally and physically run down.  All I want to do is hold my baby.  Im so sad for him.   And wish I could take his place.

I pray that this will pass quickly and that Im over thinking the situation.  But with out knowing what actually happens, the only thing left for my mind to do is wonder.

I think it may actually be time to go to Cincinnati or Chicago and see the trachea experts and get a second opinion or try to find some kind of answer!   Or, do I want to know what happens?

But for now, all I can do is pray, and give him extra love.  Lots and lots of hugs and kisses.

http://www.gofundme.com/58c7p4

Till next time,
-S