Category Archives: Esophageal Atresia

stares…

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Isaac gets a few stares when we go out, some we notice – I’m sure we miss a lot. Frequently a person looks at him, but they look just a second or two longer than normal… other times it’s blatant. Typically it doesn’t bother me, I always tell him it’s because he is beautiful (we all know he is!).

Tonight Isaac’s grandma and I took him to the mall. We rode the train in the mall, and waved wildly to everyone we passed. After our train ride we stopped to get some food in the food court. Isaac happily chewed on his small piece of chicken nugget, until he had a little choking episode. This resulted in him spitting chicken into mommy’s hand, while shooting mucus from his trach at the same time. The cough is quite loud, and obviously can attact attention. This happens at home a few times a week – we put our hand out and collect the chewed up food, and suction to make sure his trach his clear, then continue with dinner. I realized as I looked at the mortified young ladies at the table next to us, that this is not normal. I’m not sure if they actually finished their meal :) Of course, it would be nice if we could take Isaac away to deal with the madness, but when he is gagging we have to act. Sometimes it’s gross.

Later, we got on the elevator, with two men. One stared at Isaac the entire 45 seconds or so that we spent together. I suppose he actually stared at his trach, but it was pretty hard to miss.
I was a little bit frustrated by the stares, both in the food court and the elevator. I was feeling sorry for Isaac, and I suppose for me. Then I thought about it – Isaac didn’t even notice, he had no idea he had been stared at in any way.

He is such a happy little boy, and he goes about his day in such a positive way. Does staring mean anything? He IS a beautiful child, and he does have a tracheotomy. Does it matter whether they are staring because of his trach or his beauty? There really is no difference. It really doesn’t mean anything, maybe they walk away a little bit more educated and stare a little bit less at the next guy they see with a trach, maybe they don’t.

In the end, we have a happy little boy. A little boy who choked at dinner because he was eating chicken – yes, eating! My little boy, with the broken esophagus sat in the food court and chewed on a piece of chicken for 10 minutes, showing amazing drive to eat – that deserves some stares.

what point is an esophagus….

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if you’re not going to use it?? We’ve been toying with this question for a few years now. As we know, Isaac has a very nice, very expensive esophagus – custom made, just for him. For a while it was simply a conduit for spit, so to speak. Slowly he started to try soft foods – ice cream, pudding and yogurt have all slid down that esophagus.
On occasion Isaac does try to chew – this typically results in him gagging and wretching once the food hits the back of his mouth… and mommy or daddy putting out their hand for that chewed up food!

Remarkably, this week he seemed to finally wonder himself what that esophagus is for – he grabbed two cheerios, chewed them up and swallowed them!! We had fun counting as he chewed up two at a time, telling me each time they were in his belly :)

Since Thursday night we have continuously enjoyed chewing and swallowing cheerios. I never thought I could get so excited about cheerios. Assumption may lead most to believe that Isaac has eats by mouth, and has the ability to eat. We have questioned both of these ideas – we don’t know the functionality of Isaac’s esophagus, because no kids have been as complex as him. We hope it will work like a normal esophagus, but given the fact that it curves funny and has had several leaks we just don’t know. As far as actually eating – imagine never having swallowed food, then being asked to do it after 4 years of having a handy feeding tube? Isaac has a lot to overcome when it comes to the sensation of eating.

This is why that cheerio eating run is so exciting! First of all, for the first time ever Isaac consciously chewed and swallowed something. He not only didn’t panic at the feeling of food entering his throat, but he got it to his belly! This is the first sign we’ve seen that Isaac may actually get the concept of eating, and be able to do it – pretty exciting!

In terms of overall health – Isaac has been improving. His breathing still isn’t great, we’re still throwing allergy meds and nebulizer treatments at him left and right!

For now we enjoy cheerios, and keep on playing!

take that milestones!

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Last weekend Isaac went for a ride on his bike, my little boy who spent his first year in the ICU and who can honestly list a variety of therapists as some of his closest friends did something totally normal for a 4 year old…. he rode his bike! Of course, his stamina is not that of a typical 4 year old, but he totally loved every minute of it.
Watching Isaac do “normal” things will never cease to amaze any of us. We have been blessed with a child who teaches us something new about ourselves regularly, he has lived through some pretty awful stuff – but in the end he is a pretty normal 4 year old. There have been times when we couldn’t imagine normal, and certainly didn’t take time to picture what normal would be like for Isaac – this is why these times amaze us.
Lately, I find myself more and more aggravated with some pretty normal stuff – I get very frustrated when I see someone working towards a goal involving a larger house, a more expensive car, the most high tech television, etc….. I cannot explain to them how NOT important these things really are. Fortunately, most people don’t know how bad things can get, and I am conflicted about that. Maybe sometimes we need to see the bad to appreciate the good. I hate seeing my Isaac hurt, with a passion. I have cried and felt unimaginable guilt while sitting next to him, when ALL I can do is hold his hand and tell him he is the most amazing boy I know. My husband and I have gone without paychecks for months on end, relying on our savings and the kindness of friends and family to pay our bills – because we couldn’t leave Isaac’s side. It sucks.
I decided a long time ago that it doesn’t matter how big my house is, we may very well stay in our 3 bedroom (defintely too small) townhome forever – what matters is that we have a roof over our heads and our baby’s are healthy. My husband and I will never drive a new car – because we know the value of socking away any money we can, just in case…. we have lived just in case. We buy a lot of stuff used, and I love a little thing called “freecycle” because it is FREE :)
I have to remind myself often that my friends haven’t lived our lives. While I am glad they haven’t, in a way I feel sad for them – we have been given a reason to find joy in the very smallest moments, and to find value in things that don’t typically scream “valuable”. Once you have seen a family mourn a child that you loved deeply yourself, or watched your own child lay in a bed with countless tubes and IVs hanging from them, or heard the cries in the hallway of a family that is living through their own version of hell with their child you can’t forget that. In fact, you live to honor it.
In this way, I am lucky – I hate some of the things I have seen and the moments we have lived – but without them I wouldn’t know that my 4 year old riding a bike could bring me to tears because of the sheer normalness of the moment.

what is love?

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We’ve been back from Minnesota for a few days, and while we were there we got Isaac and his girlfriend together for a playdate, and photo shoot :) Not only were our two “I’s” born with the same birth defect, they are also both trached and have had more surgeries than you can count on two hands… a match made in heaven.
If you watch Isaac and Ireland together you will see an amazing connection, it’s very difficult to explain. They have a connection – a very real, very mature connection. They touch like a couple many years in love, they offer each other kisses and soft touches. One often leans in close to the other, and as they sit forehead to forehead it is not hard to imagine the thoughts they are sharing. They somehow KNOW each other on a level that is not typical.
When I ask Isaac who his girlfriend is he shines – and he says Ireland. My son is so lucky to have made a connection with someone who truly “gets” him. She has walked the same road, she has felt the pain and confusion, and she has also come out of it stronger. I know they are only 4, and we are (mostly) joking when we plan their weddings, but at the age of 4 they know love. They show us what love is. You can’t help but smile and ooh and ahh as you watch them.
Because of these two kids we know what love is, and it makes us better. Our connection to the Meyer family is deep, again – we’ve been through so many of the same things. It seems at times like our EA kiddos are leading the way….

anniversaries!

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Last week several important anniversaries took place in Isaac’s world. They are both very important anniversaries……

On March 12th, Isaac’s “trachiversary” passed – this is the day that he received his trach in 2009! Up until that day we had watched his ability to breathe get worse and worse, our baby was exhausted and unable to keep up with the work it required to simply BREATHE. We were told that the trach was a strong possibility, then told it was a definite – but we were still not ready to give in. On March 11th one of Isaac’s nurses called me at work and essentially said enough is enough. She explained to me that it was inevitable and our bigger goal should be to avoid an emergency tracheotomy – which could result in more severe consequences. We were scared, this was the most devestating decision we have had to make for Isaac – it was the one we knew we had to make, but it was so severe and life changing.

When I saw Isaac after his trach surgery I cried, not sad tears this time. I cried because my baby looked more at ease than he had for a long time. I cried because we had known him for 4 months, but never seen his entire face – there was always a tube and tape somewhere, and on this night we were finally seeing ALL of him. I cried because I knew, instantly, that we had made the best decision. Life with a trached 4 year old is not easy – it is a constant source of infection (it’s like a little petri dish!), it can become blocked at anytime (requiring an emergency trach change), and it makes him “different”. However, he is alive – and I think that’s a pretty good trade!

The second anniversary took place on March 17th. One year ago, on St. Patrick’s Day, Isaac was discharged from the hospital after a 6 week stay to repair his broken esophagus and lung. It was at times a scary stay, and with an infant in two it was definitely a long stay. Since that discharge ONE YEAR AGO Isaac has not been hospitalized for any illness – only routine procedures!! In his 4 years this has never happened, he has never gone more than 6 months without a sick hospital stay.

We kept this impending anniversary to ourselves – just so Isaac wouldn’t get any ideas!!

Isaac is in an amazing place, one that we have not ever seen. We have a little boy who talks nonstop, when he runs out of things to talk about he sings, when he runs out of songs to sing he bangs a drum. While doing all of this he dances – and dances, and dances. Could he be feeling the same joy about a normal life that we are??

Tomorrow Isaac, mama and his Goo Goo (grandma) fly to Minnesota for an esophageal dilation. Of course while we are there we will see Isaac’s girlfriend – Ireland. These two have a connection that you don’t often see in kids, they are so affectionate and loving towards each other – again, they both seem to have a deeper understanding of love and affection after all they have been through. We are planning a photoshoot with the wonderful photographer who volunteers his time to the Ronald McDonald House (Jim Bovin) – he takes beautiful pictures and we can’t wait to share our lovebirds pictures with all of you :)

Boy band saves the day??

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I’m pretty sure I’ve said before that the first maternal/fetal specialist to look at Isaac during an ultrasound at 21 weeks suggested that we terminate the pregnancy. He did this after first telling me “this is bad”. We, of course, opted not to terminate (that’s obvious at this point!), but it made that time in our lives that much scarier. If the doctor who specializes in broken babies suggests termination – it must be bad, right?
We spent a few weeks telling ourselves everything would be fine, but I’m not sure how much Greg or I truly believed that. We did research, there were tons of babies that survived with Isaac’s birth defect, and much, much worse. It was just hard not to go back to that original doctor and his very severe prognosis.
Within a few weeks of that appointment I had tickets to see my all time favorite band in concert – New Kid’s on the Block (now the grown up edition – NKOTB). I LOVED this band as a teenager, and I mean love. When we got tickets to the show I was over the moon, but had not been feeling too happy about anything in the weeks leading up to it.
I was about 24 weeks pregnant the night of the concert, I had never felt Isaac kick – a side effect of carrying an EA baby is way too much amniotic fluid, he didn’t swallow any –so he had tons of swimming room, eliminating kicking opportunities. As the show started I felt him – my Isaac was dancing his heart out (okay, he was probably scared to death, but I like to think he was dancing!). He kicked for the first 10 minutes or so of the show – and I couldn’t tell you one thing that happened other than that. I didn’t care that my heartthrobs were on stage, I KNEW my baby was okay and would be okay. It was an amazing, zen moment for me. I don’t know why a kicking baby at a NKOTB concert was the deciding factor me, I just know that it was. I left that night ready to take on anything Isaac brought my way – and bring it he did!
Shortly after this I was placed on bed rest at home. In order to check on Isaac every morning I would put headphones on my belly and play him some NKOTB, and he would kick (maybe running away, that’s up for interpretation). I loved feeling him moving. When we both had enough I would pop in a nice, quiet acoustic CD (of course, performed by a member of NKOTB – Danny Wood) and he would calm down. We did this every day, until he threw me the next challenge :)
Eventually, a bit sooner than planned – Isaac was born. We all know most of the story from there. What’s important to take from this for me is the fact that music now plays such a huge role in Isaac’s life. I’m not sure if there is a connection to our first concert together and all of the in utero music, but I’d like to think so!
Isaac sings and dances with reckless abandon… we catch him dancing with his reflection in the dishwasher, dancing to make his brother laugh, singing when he doesn’t even realize we’re paying attention. I still find it awesome to ride in the car and hear him singing along to the Fresh Beat Band in the backseat – he knows all of the words! The fact that he sings and dances with such a lack of inhibition, after all we have put him through, is remarkable.
My son is awesome – this I’ve always known. His lack of inhibition and love of fun still astound me.
And, in the end – I have to thank my favorite boy banders (NKOTB) for showing me WE would be okay.

Guest blogger – THE big sister!

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Tonight, what it’s like to have a special needs brother…. from Talia!

Having a little brother that has medical conditions is a wonder in life. It’s the one thing you focus on because you want to learn about it or you want to see it. I’ve seen my little brother in severe and scary times and I know that he is a brave kid. But it’s hard to understand why HE gets the attention. I know that he needs care and 24/7 attention where he needs to be taught something or given meds, but sometimes I want some part of that attention. Somtimes it’s not fair. Sometimes I get lonely. Sometimes I feel deserted. But in the end, even though it doesn’t feel like it, your loved ones will always love you with all their hearts. Maybe sometimes they’ll have a couple of times where they can’t spend some quality time with you, but you have to know that, that kid needs help. Think about it, if your parents or your brothers or your grandparents hadn’t been their for your brother or sister,then you probably wouldn’t even have a brother or sister right now to be there for you. Their always there for you. To call your name like sissy or bro-bro, to help you with situations, or even to make you laugh. You need them or your life wouldn’t be complete. They’re there to be who they are, no matter if they have a restriction or no matter if they’re being stubborn because they’re just being themselves. Even at times when they’re being silly or if they’re making you laugh, they wouldn’t of made you laugh if they weren’t being themselves. You should be glad you have them. So to any child that is about to have a baby brother or baby sister or someone that already has a sibling, always love your loved ones no matter if they might be a little different from all the others. Always spend time with them to make them laugh and always make time for them because laughter and love are the top things that can heal a sick child.
Sincerely, Talia :)

don’t jinx it!

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Like most inner circles, medical mamas and medical professionals it seems have a “rule” This rule is to not ever say something out loud like “he’s been healthy for such a long time” or “we seem to finally be past the worst of it”. The last time I had a coworker ask me how Isaac was, I responded “great, hasn’t been sick all winter”….. oops. Literally 24 hours later we were at the doctor being diagnosed with aspiration pnuemonia. We find ourselves tiptoeing around, and not sharing happy things until they have passed and the fear of jinxing them is gone.
That being said, Isaac was acting sick again Friday – breathing fast, kind of quiet, typical Isaac getting sick. At the very last minute (literally) we went to see Dr. Carroll (thank God her office is 5 minutes from our house – divine intervention??). As we pulled into her parking lot his breathing slowed and his color was normal – seriously. Dr. Carroll came in and he went one step further by taking my phone and typing I-S-A-A-C on the very small screen. She listened to his chest and thought he sounded great (of course!) and after discussing the proper protocal nurses may want to follow with me when I call with an “emergency” at the end of the day (“Kim, have you taken your xanax” will be the new protocal!) we laughed and left. Isaac took it another step by dancing the whole way home.
This weekend his trach secretions have been green, not a color we like. Today he was more tired and his lungs sound junky. Really? We did a trach change, he threw up (another “Oh, Isaac”) and we did a neb. This resulted in a little bit more ick in the lungs and a discussion as to whether or not to start antibiotics (jury is still out on that one). Of course, since then he has been playing and laughing and talking. Oh boy. When do we stop panicking with every sick? How do we know what is normal and what to jump on top of fast? I’m leaning towards him just being sick – for the past week or so. I hear that is “normal” :) Since we are sharing some of the same symptoms I think I may be onto something…. but this is the continuing issue for us – when to panic.
We have had the best winter yet for Isaac. What I didn’t mention earlier is that I told Dr. Carroll that in a few weeks we will be celebrating one year of no hospital stays for being sick – he’s only been in for procedures. This is a HUGE accomplishment for Isaac, as I’m pretty sure before that we never went 4 months! As soon as I said it I wanted to suck it back in – what was I thinking? Even if he got admitted tomorrow, almost a year is pretty big as well. I’m not saying the magic date, that would be a serious jinx.
Even sick for the past few weeks we have been amazed by this kid. He is talking nonstop (be careful what you say around Isaac now), singing is a normal occurance, and dancing is of course a favorite.
This week mama will watch him obsessively for signs of anything worse than a normal sick, and eventually we’ll learn how to know the difference!

being a special needs mom

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I noticed a few blogs this week were focused on what NOT to say to a special needs mom, or how you can help your special needs mom friends….. and I thought about it quite a bit. There is really nothing you CAN’T say to me, I am a special needs mom – and while I’m sure the other moms who blogged about it were not saying they would have it any other way, I would definitely not have it any other way! I also know that not everyone knows what it is like to be a special needs mom, or special needs dad, or grandma or grandpa, or aunt, uncle, sister, brother, etc.
So – what is it like to be a special needs mom? It is beautiful, and heartbreaking, and sometimes a little bit exhausting. It is lessons I never thought I needed to learn, and an appreciation that I never expected.
I always thought I was pretty open minded, and that I knew a lot about the world and causes….. being Isaac’s mom has taught me how little I really knew, and how much more open minded I could actually be. I had great friends, and I learned that they will stand by me through anything.
I have made new friends – other special needs moms, some I have never spent time with in person, but we have these amazing phone conversations and we just “get” each other. I can call them in the middle of the night from the ICU and tell them how badly I need a piece of chocolate cake, and they understand why. I have been exposed to other special children, and I have learned oh so much from them.
I have learned compassion, resiliency, love, unconditional relationships….. they have taught me that bad days aren’t always the worst days. These amazing children (including mine) smile with a knowldege of something we don’t understand – it is the knowledge of their survival. How can a smile not mean more when you’ve been through as much as these kids? Nothing that they have been dealt is fair, but they don’t complain.
My Isaac has a compassion that I have never seen in a four year old. He loves to love, he consoles with great understanding. When he speaks it is magical, the fact that he CAN speak is in and of itself a miracle. When he tells me “I love you” I melt. It has such deep, amazing roots. Most parents value their child’s voice and particularly their first words – we live for Isaac’s voice. It is a voice we missed for several years.
So, there really is no right or wrong thing to say to me. Because I have this amazing gift, in the form of a beautiful 4 year old, that I marvel at several times a day. I sometimes put my foot in my mouth or say something I shouldn’t have – that is life. There are no rights and wrongs when it comes to special needs moms – just talk to us. Keep us in your thoughts when we need it, and laugh with us when we need that. Marvel at our children the way we do, and love all of the little quirks of your own children a little bit more because of my Isaac.

the things you can learn in the shower!

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First of all, technically trachs and showers don’t mix, but we’ve always proven to be big time trach rule breakers! Last week Isaac found mama in the shower, and decided he’d like to try one too…. of course now I can’t take a shower by myself! I wouldn’t normally share our shower habits with the public, but there is so much to it that I think is important to share.

Isaac LOVES the shower, and he gets braver and braver with each one he invades. He’s gone from sticking in a two to letting water hit his belly. We are very careful to protect the trach, so I’m not sure how much braver we’ll let him be :)

Tonight he kept begging to stay in longer, and had a few tricks up his sleeve to convince me. He started by WRITING I-S-A-A-C on the door of the shower!! Okay, so his A was a little off, but it was absolutely amazing to see. When mama started trying to end the shower again he spun around and pointed to the tile on the wall and said “mama, square – 4 sides”! Holy cow, who taught this kid how to talk! Before the end of the shower he had grabbed each of my hands and planted a kiss on them :)

He eventually ran out of tricks, and we got him dried off and dressed. I watched his face tonight during his special shower, between his big eyes and beautiful smile I knew the benefits way outweighed the risks. My son’s smile can speak a million words…. Even with no words, he speaks. His eyes and smiles speak volumes, he clearly has already achieved a lifetime of experience in just his first 4 years and when you least expect it you can see it in even the briefest glance.

Isaac’s light seems to just shine brighter and brighter. This weekend he danced, he talked (and talked and talked), he gave a million and 5 kisses and he loved us all up. A year ago we were parked in the hospital, watching his leaking esophagus and holey lung with baited breathe…. life is so very good right now!