Please do us a favor

To our friends and family:

Brett and I are begging you all to visit the Chop link to Brody's airway clinic that I posted previously to learn about what our family and our baby are about to embark on. There are several videos on there outlining what we will encounter in preparation over the course of months or possibly years to come, explanations of how the different procedures are done, what the treacherous recovery is like and success stories of kids like Brody. Please please please visit this link if you truly want to understand the medical complications of our son.



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Cami I'm coming home brotha!

Bruised and battered but I'm going home!!!!



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The Brody Show

Loving Daddy before surgery


The calm after a really rough night

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Brody's condition

If you would like to know more about what the procedure is like please visit the Chop website below to learn more from the team that will be "choreographing" the timeline:

http://www.chop.edu/service/otolaryngology-ear-nose-and-throat/airway-reconstruction-video.html?item=2&keyword=none


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The unexpected

After some Xanax and a lot of crying I am able to fill you all in on the turn that Brody's progress has taken. We were absolutely fall off our seats shocked to learn that Brodys airway is too small to be able to breathe without his Trach. He has subglottic and laryngotracheal stenosis that have most likely been there since traumatic intubations back in the NICU. This most likely has been present for a long time and no one else caught it. This changes the outlook dramatically. Brody will not be getting his Trach out in the spring. There are a lot of things that need to take place prior to the reconstruction. We need to confirm that there is no reflux...which was one of the goals today but Brody freaked out so much that he pulled the probe from his nose and that has been a whole other mess. Next he needs to be cleared by Pulmonology as his lungs will need to be in their best possible shape to support what he is about to go through. Often they wait until kids are between 2-3 but that will all depend on his lung function. Then we embark on a reconstructive process that involves stenting the airway and taking cartilidge from between his ribs to reconstruct it. One or two major major major surgeries requiring 2-4 week ICU stays. Brody won't be able to vocalize at all until then and likely not able to advance his feedings any more. He will have to start to learn sign language to express himself and after work very intensively with speech therapy. When all is said and done the success rate is 90% but to me... I fear the other 10% of kids who are never able to have their trachs removed.

We are terrified. I really was beginning to see the light at the end of the tunnel. I thought that we would get some relief soon and that we could do "normal" activities with our kids and maybe even finally get my dream of the beach with the boys. I don't know when, now if, I will ever feel like me again and my kids will ever be able to socialize and enjoy the simple things they have been unable to participate in. I am paralyzed with fear once again.


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Nerves

Brody has a surgery today and will need to stay at Chop for 24 hours... Nothing compared to what this kid has been through in the past but the older and more aware they get the harder these things become. He will have a bronchoscopy-a camera down his throat to determine the state of his trachea without his Trach in... This will determine when Brody will permanently have his Trach removed. He will have redundant tissue around his Trach removed so that he can begin to wear his speech valve so that he can learn how to verbalized and taste and sense foods better. He will then have GI come in the do an endoscopy-another camera down his esophagos, stomach and intestines. Then he will stay overnight in the ICU with a tube placed from his nose to his belly that will measure acid levels to tell us if he is still refluxing (which could also get in the way of his Trach coming out). During the 24 hour span that the ph probe is placed he will have restraints on his arms to prevent him from pulling it out...makes me so sad. Of course our hope is that the tests will reveal that Brody is ready to begin the process of decannulation and we will have a more defined timeline for when this will happen.
General anesthesia always sucks. Hospital stays always suck. Being away from Cam sucks big time. But hoping that all of our hardwork will pay off and Brody will be tube free in a few months.
Cameron gave Brody one love bite for the road




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A lazy Saturday....special for us to have so much "lazy" time

Mesh twins


-cam playing peekaboo at whole foods


Hopefully Brody will be able to join errands soon!


Mom ripped my jeans... All the range with the 12-18 group... Months that is : )



We're in trouble...


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Discovering

Good thing the lid was closed. Looks like we'll be using those locks soon!

That would be Brody reaching way up high!


Mazel you can run but you can't hide


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Look I have two!


Ready for my big boy car seat but my dumb mommy bought the wrong kind and it wont go rear facing!


Looks like we got some fancy chairs until we're old enough to sit forward


Love my chucks


Holding my vibrating chewy... I never did this before.. Another step in the right direction for feeding therapy... Just don't trick me and put food on it!


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Sunday funday used to mean something very different around here

Brett's joke has been censored


Found it again!


Sunday's finest


Love


Hi five brotha!


Beautiful boy


This is NOT a normal way to sleep! T & A May 2 to get this baby breathing right (tonsils and adenoids)


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A little Brod

Look mom, no Trach! (it's under the bib)





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A whole lotta Cameron

We were pooped!


Cams new swim trunks. Summer here we come!



Jail baby very curious about getting down those stairs


I have found the way to Cameron's heart with chocolate pudding sitting on the floor watching Baby Genius while holding a toy... This is what it takes to eat!


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Facebook

It's been 18 months since I personally have made a post on Facebook. At 3 months when we thought we were "safe" to share the amazing news of twins with everyone I posted an ultrasound picture revealing 2 sacs and 2 heartbeats. Then just a few pics of my growing belly which abruptly stopped when I went on bedrest. Amidst all of the worry of what would happen to me and the boys I thought maybe I shared too much with the world on Facebook. How would I explain a potential 5 month pregnancy loss with people I haven't spoken to since high school or friends of friends or just those acquaintances I know but don't really know?? I made the decision to disconnect from sharing this way to protect the boys and myself from "talking". This has been a very intimate experience that the blog has been a great way for me to express my feelings about as it seemed "safer".

This weekend I finally posted pictures of Brody and Cameron on Facebook and was anxious and unsure until the last click. The response that I got was really nice and I'm glad I did it. Still I ask that more specific or personal questions/comments go through email as I wish to keep the details all to my private site but it feels freeing to finally open up a little to those unfamiliar with what has been going on on our lives.



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Purim or chocolate pudding?

Is that Haman?? Oh no, it's Cameron!


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Cams sensory issues always got in the way of touching weird things... Like play doh... Until today!!!

Brody eating chunky stuff!!! He only did stage 2s before this due to his feeding difficulties... Progress!!!

The child who never sits still... Sitting still in his new chair!!!

Sleepy head baby fell asleep waiting for daddy to get home




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Cams tude


A little sweeter


Baby or big boy??


Mr I don't eat sure likes pickles

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Babies got tats

Bling king


Kiss this...



Arts and crafts



I love u marker


High 5!


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Swinging into spring

Brody's first time in a swing and outside for something other than a doctors appointment!






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What a difference a day makes

No words for the pride we have in this kiddo

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Brotherly love

Stealing each others toys and fighting like brothers already

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Long time, no blog

Brett asked me today if I can ever stop worrying long enough to smell the roses... My very quick answer was no. It's not that I don't want to be positive but I feel like my job as their mother is to worry so that I can best prepare to combat whatever issues arise. I wish that I could enjoy the good stuff more but it's just the protective nature in me that won't sleep until I know my babies are out of discomfort and on the right track.

So, that blurp fills those trying to get a hold of me recently in on why I haven't called back- super busy, super sick this week, without many nursing shifts since we had to fire a bunch of sucky
ones, and just feeling a bit blah. I'm just not feeling much like Melissa anymore... I'm sure once I'm a little more well rested and have my voice back I will bounce right back.

Anyway enough about me... To the boys. Cameron went to visit a new eye doc at Wills Eye. This is the man we should have gone to for his general opthalmology treatment in Philadelphia all along! We loved him! He was super impressed with how Cameron is using his vision and gave us reason to be very optimistic. He confirmed that his nystagmus ( the horizontal movement of his eyes) is worsened when he's tired, stressed or in pain... And when it is triggered his vision is worse than normal at that time. Which brings us to Cams other issues.

We saw the general surgeon today regarding his reflux and we are trying to stay away from it but surgery may still wind up in his future to intervene the pain and discomfort he has been in for a long time and the impact that these symptoms have had on his development and personality. We will wait until we see ENT on Monday to decide which direction we will be going with this.

We will be having a serious discussion with ENT regarding his enlarged tonsils and adenoids and their role in his discomfort as well. He is one sensitive complex boy but I just want him calm, comfortable and eating, sleeping and speaking again!

So Brody- kicking normal ass. He is a big fan of shaking his head no to every question we ask, laughing at his own toots, attacking the cat and dog and pulling their fur and throwing the occasional temper tantrum. its so cute though. He is developing quite the adorable personality.

Brody does a ton better than Cam with feedings but both have major major issues in this department. It's so hard for me as meal time happens quite often throughout the day and every time it's a fight. We are doing everything we can to make it better with therapy, medical intervention and patience but just seem to be standing still in this department. Probably my biggest frustration these days.

Despite those issues they are both in great health and growing beautifully. We are very very fortunate for that.


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