And we have an answer...

We now have an answer to our question as to why Jack just recently started aspirating.  Jack has a congenital abnormality called a laryngeal cleft, basically he has an extra bit of space around his vocal cords which allows some food to trickle into his trachea.  Basically what it sounds like from an ENT and pulmonology viewpoint is that this cleft has allowed him to aspirate this whole time but just recently his reflux calmed down enough and the inflammation in his esophagus decreased enough for the aspiration amounts to increase.  From what they have told us, is that they will allow him to continue with his NJ feedings, decrease the inflammation from his reflux, and in a couple weeks, repair the cleft and once he is allowed, start bottle feeds again.  Turns out that the trace aspiration he has been having is what has probably kept him on oxygen but we don't know for sure. 

They also found 2 other abnormalities during the procedure today, so they are planning on doing a CT scan tomorrow to check those out and make sure it isn't anything major. 

Hopefully we will be heading home soon, then we'll be back in for another surgery to repair the cleft and then we'll hopefully not run into anything else majorly wrong!

Answers Tomorrow??...

We are now through day 3 in the hospital and hopefully after the scopes tomorrow we will have some answers to this mystery.  The ENT doc came in this evening and based on her assessment of his swallow study, she believes he may have a laryngeal cleft - a small one - the possible reason why this did not show up before - his reflux.  Most of this is speculation until we get a for sure answer tomorrow.  I'm hoping it is something easily answered and found.  We have been through so much and would like to have a good answer on this one!  We do know that he handles his .25L of oxygen very well - satting 100 pretty much the whole time, and it is possible they will give him a go off oxygen again while in here to see how he does! 

Dustin went to get a good night's sleep at home tonight and I was home last night.  Hopefully we will all be home soon!  Here are a couple pics of Jack fighting sleep tonight - he's is exhausted but won't close his little eyes just yet!  What a brave, awesome little boy!  I am so proud of him!!

**Sorry for the quality - I took them on my phone!**

The hospital...

Well...unfortunately Jack has something going on right now and they don't know what - that's the scary thing.  We came into the ER last night after noticing that around his lips were turning blue during his feedings - of course this was after he failed his swallow study by aspirating on all types.  We will hopefully get some answers as to what is going on - though I don't know if we'll have to wait until Monday for something or if they'll do anything over the weekend. Anyways...we are hoping they can figure out why all this started last week and we can get back home! 

Poor Little Jack

Swallow Study...

Well, Jack may either be a lucky guy that I'm a therapist and his aunt is a therapist or he may hate it later in life but right now, it is at least getting some stuff handled quicker than the norm.  Since before our episode in the ER, we noticed some problems with Jack's swallowing - he seemed off, anyways, they thickened his feeds when we left the ER, so I decided to call one of the speech therapists (Aunt Marianne) to ask a few questions - she told me to call one of the peds therapists - I told her about everything that was going on and she said she was going to talk to his pulm office about having a swallow study done to make sure nothing is going on - turns out the dr. would have suggested that after our appt. on Wednesday but Jack is scheduled to have the study done Friday before his Wednesday appt!  His eating still doesn't seem to be the most efficient and he's not eating as much as normal for him, so hopefully we'll get some answers soon - everything just suddenly changed from being fine to falling apart within a couple of days!  I'm just hoping there is nothing major going on...

Here's Hoping, take 2...

Well, I wrote today's earlier post this morning and then, we ended up in the ER, they really couldn't find anything wrong with Jack except he was having some difficulty breathing(slight wheezing) and we've noticed he's been having trouble with his feedings.  They took a chest x-ray and said it looked better than his last one - started us on albuterol and thickened his feeds to help with his spitting up.  We are hoping these things help but so far, he's just wroking harder to eat (I think).  We're going to be keeping a close eye on him and see how this is working.  We are keeping the pulmonologist appointment for March 31 to follow up with this - I was hoping he would come off oxygen then, but I'm not too sure now.  Please keep your fingers crossed that Jack gets better - with whatever is wrong with him!

Here's hoping...

Jack and I are both hoping we are slowing down on his doctors appointments here soon.  We had his eye appointment this morning and Dr. Roberts said his ROP is still resolving and we'll go in again in a month for hopefully his last scary looking exam.  After that we'll have another type of exam which will hopefully be every 3 months rather than every month! 

We set up his PT/OT through First Steps, he'll be getting OT 2x/month to work on feeding efficiency and PT 2x/month to work on gross motor stuff.  We have been working on the things the PT/OT evaluators told us to work on over the weekend and even the OT said he looked better!!  We'll just keep working with him to get him caught up to his actual age! :)

Work...Wal-Mart...Target...

Ugh...I am exhausted!  Work pretty much wore me out today - I can't think of any other way to put it.  I don't know why but my brain was completely fried and all I wanted to do was get the shopping finished and get home but we needed a few things from the store, so I thought I'd stop by Wal-Mart on 86th St. because someone told me they had SwaddleMe's and I wanted to get one.  We needed a few other things, so I thought I'd be able to get everything...yeah right...I already didn't like Wal-Mart - but today made me despise it!  It was ridiculous!  They had the SwaddleMe...but they didn't have anything else - no formula, no coffee...you know, the necessities in this house!  Oh and what really made me aggravated was the SLOW people walking in the middle of the aisle so I can't get around them...

Anyways, I had to stop by Target also...they had the formula (only 2 cans left, but they had it!) then I realized I left the coupons in the car (crap!).  I went out and got them because I had $5 off for formula!  So, I thought I was finished shopping and went to check out - nope, forgot coffee and deodorant!  I swear I made a list!  Thankfully the cashier was really nice and let me suspend my order, run and get those things and come back to finish the checkout!  Ugh...I don't think I got far enough along in my pregnancy to have the forgetful pregnancy brain, but I've got the mommy just got off work and is exhausted brain going on today! 

Dustin did send me this really cute picture of Jack today which made me smile!  Don't you love the overalls!! 

Therapy...

Jack had his First Steps Eval today - I wasn't sure what they were going to be looking for this morning.  I am an OT but I have worked with adults for the past 2 years, so I really don't know much in regards to the peds world, especially preemies (except for Jack).  Turns out, Dustin and I have been doing some things right and there are still some things we need to work on with Jack.  Here's what they said...

 - Cognitively he is doing great and probably close to his actual age - yay!!  That's a good thing, he's been smiling and making noises and has different types of cries (hunger, mad, etc) and he showed his mad cry and his hunger cry while the therapists were here today. 

- Movement, Jack likes to move, he's a busy boy.  He moves his arms and legs a ton when he's on his back and we always thought this was a good thing...turns out he is working on body awareness when he does that.  They want us to work on continued flexion with him - keeping him swaddled, tummy time with legs and arms underneath him, sidelying while flexed.  We also have to work on bending his elbows and knees - he still likes being in extension and they want him in flexion...we have a bunch to work on, but I think he can do it! 

Any Ideas...

I am open for any good ideas on updating and customizing our blog.  I would love to put more pictures, videos, etc on here and have some fun with the header!  Please help!! 

Getting Bigger...

Most parents look back and wish their child didn't grow up so fast.  I know at some point, I will probably think the same thing but right now, getting bigger is going to help Jack more than anything.  We had to go to the doctor today for a weight check because he hadn't been gaining as much weight as he should when we went 2 weeks ago.  So, we had an appointment today.  I had been guessing what weight he was going to be, I was hoping for 9 pounds.  We started noticing his newborn sized clothes were getting small and he was looking bigger in his swing and bouncy seat.  I wasn't right about his weight, but he was pretty close - 8lbs 13oz!!!  It was so exciting to see that number come up!  They are happy with his weight gain on the increased calories and we'll keep things as is and head back in for his 6 month check-up in April.  For many people, almost 9lbs isn't very big, but for this little man - it's huge - he's over 7lbs bigger than his birthweight!  That's a whole baby bigger!  WOW!

Happy Jack, Mad Jack...

 Jack has many faces, here are two fun ones I was able to catch on camera.  He was such a happy baby this morning...

This is the other face of Jack - he was angry with me for some reason, most likely it was because he wasn't being held!!  Fun times at our house! :)

Sleepy...

We've been working on the sleeping htrough the night thing because Jack is eating enough during the day to cover what he needs, but last night was not good.  Little man must have had a few bad dreams because he was screaming around 1am then went back to sleep after some cuddles (2x) but was up talking a couple hours later - a quick switch of his mobile(love this thing) and he was comfortable!

We tried weighing him while we held him on the scale last night and it said he weighed about 8.5 pounds...hoping that is correct...we might see 9lbs when we go for a weight check next week!!  Keep your fingers crossed!! :)

Spring Cleaning...

So, I'm really hoping that spring if finally here...the snow is almost melted off the ground and I had the sunroof cracked open in the car on my way to Target yesterday!  Since it seems as though spring is almost here, I decided it was time to clean out the closet - besides there is probably a ton of clothes I haven't worn in forever!  What a huge difference - I found clothes that I didn't realize I still had - bunches of casual pants, jeans, and summer clothes!  I need to do this once a season!  

Jack has been working really hard on reaching for objects - he loves his activity gym (Thanks Shelly!!!).  He punches the octopus like it's his job!  We are starting to wonder if he'll be a lefty because he seems to use it more than his right!  I'll post pictures later! 

Hope everyone has a wonderful Monday - especially with all the wonderful sunshine!

Ready for warmer weather...

Finally...the temperature is going to be above freezing for a prolonged period of time!!  Unfortunately it isn't going to be warm enough for Jack and I to get out and take a walk.  I am so ready for it to get outside and have some much needed exercise time!  It's been a long winter! 

Baby Smiles...

Jack spent a wonderful Saturday with Daddy while I went to a course.  Jack has the most wonderful smiles and it is rare for us to have the camera ready to snap a quick shot of them.  Thankfully there are cameras on our phones now (what would we do without cell phones!!) and Dustin caught this great smile!!

Of course, he was showing off this smile in full force yesterday evening when one of his favorite NICU nurses, Sara, stopped by to see him!  What a little ham! :) 

The typically happy baby has been having some wonderful screaming fits - especially when he's VERY hungry or is not being held - some major red-faced screams with large tears.  He enjoys being held and only likes to be put down at night time - except for Sunday night...he forgot that you are supposed to sleep at night and kept us up from around 2am until it was time to start the Monday - talking, screaming, wanting fed.  Thankfully so far that was only a one-night thing!!

Here are some updated pictures of Jack which Dustin recently took.  The kid has a ton of stuffed animals!!  Turk decided to help out and make sure Jack was comfortable!

Jack had professional photos done, please check them out at:  http://jonistreitphotography.blogspot.com/