September 17th: Surgery Day

The night before, the surgery got pushed back to an 8am arrival/9:30am start. Surprisingly, I was able to fall asleep and get a solid 4 hours and another few with some tossing and turning.  My exhaustion was greater than my anxiety I guess. Of course, even though 

Little A didn't know what was going on, he woke up at 5:00am. Normally he would take some milk and go back to sleep, but all he was allowed at that point was water or juice. I swear as all the adults got dressed we also took turns using the bathroom due to anxiety. We left the house at 6am because surgery being pushed back meant we were going to hit traffic going to the hospital in the city.  It took us about an hour and a half--but as the anxiety was building it felt even longer. After we signed in, we went to the waiting room that had toys for Little A and shortly after a nurse came to get my husband and I first. We went into an exam room and went over some medical history. Although my stomach was still churning, she was definitely a calming factor. She brought in a mat and let Little A pick what toys he wanted to bring with him when he joined us in the room. The nurse played with Little A in between checking his weight and vitals. While we waited for the anesthesiologist and surgeon, Little A just wandered around the room and the hallway.  All the nurses who passed him commented on how cute he was, and one even gave him a sticker. He was wearing the cutest little hospital gown that was a little too big and toddler sized slipper socks. His cuteness helped lighten the mood. Little A--so innocent, happy and smiling--didn’t even know what was coming his way. The anesthesiologist came into the room and explained things and got consent. Something about his presence and voice was just so calming and I was not feeling as anxious as I had on the way there. Then the surgeon came in, explained the procedure again and said it should be about an hour and then he’ll come talk to us about how it went. Again, I was feeling a little calmer at this point still just because everyone around you at the children’s hospital seemed so comforting and safe.  Thank G-d grandma came with us and stepped up to the plate when neither my husband nor I felt like we could handle bringing Little A to the OR while they put him to sleep (although I think somehow if I had I would have been able to muster up the mommy strength for Little A). I gave Little A a big kiss and said see you soon. When mom came back from the OR, all three of us settled into the waiting room. My father in law made it to the hospital too and joined us in conversation to pass the time. A few candy crush boards later and an hour had passed already. The surgeon came out to talk to us and told us everything went well and about the aftercare. Ten minutes after that we were able to go to the recovery room where Little A was still asleep in a crib. The nurse was amazing and told us to let him sleep.  It is better for them to wake up on their own so they won’t be as cranky. As soon as we heard a peep and he started to stir I was standing right next to the crib so when he opened his eyes he saw me. Little A did not like the leads or blood pressure cuff and was getting upset. The nurse helped me pick him up while they switched out the crib for a big comfy chair for me to hold Little A in. When he was ready he drank some apple juice from his bottle and when that stayed down we switched him to his milk. Then we saw the Little A we know. He was not happy when his blood pressure was taken again and again and he did not like the heart monitor leads or the pulse ox on his foot. He cried and tried to take it all off. We kept telling the nurse, that is his angry cry because he isn’t getting his way, not a cry of pain.  After about an hour in recovery, since he stomach was handling food, we were able to get ready to go. All the wires and stuff were taken off and we got him back into his clothes, but he was still a little weary. He cried/whined all the way to the elevator, which is when he realized that momma and grandma were just as happy to be leaving the hospital. Once we were back at the car and he was buckled into his carseat, you could tell he felt safe and relaxed again; even most of the way home, which this time was only a 45 minute trip. He was cranky at times which was expected, but he was also hungry enough to eat some light snacks. After a nice 2 hour nap, Little A was almost himself and signing to go outside on the swing. Since Little A was such a trooper, we of course brought him outside. Kids are so resilient and by bedtime he seemed to be his goofy self again.  As for mom, grandma and dad, we can let out a sigh of relief that this chapter of Little A’s journey is officially over and behind us. We will have a few more years before we have to worry about visiting an OR again. I still can’t believe sometimes how far he has come in such a short period of time...I am definitely proud of him! Little A will be able to do anything and conquer the world!.

Tubie removal: didn't go as we thought

We thought the whole feeding tube removal process was going to go differently.  When you are first getting ready to remove the tube, you are told it should close up all by itself within 2 weeks.  Key word there is should. We were also told if it doesn't, Little A may need a few stitches. I thought "ok just a couple of stitches on the outside wouldn't be terrible"...clearly not thinking stitches on the inside may be needed. Well 3 weeks go by and there is still some leakage, but you keep telling yourself that it can't be his food or milk because the stomach lining has to have closed up...it's just healing juices.  You start to Google "feeding tube removal sites" and the few images and stories you get don't match your situation, so you think it must be healing. We decided we better go back to the surgeon's office who put it in and have them take a look to ease our minds. A few days before I panicked because while changing the gauze on little A's tummy it is purplish just like the yogurt he ate a few minutes ago. My stomach starts to ache and I think to myself this is not good and my worst case scenario is going to come true.  A few days later we drive all the way to the city to see the nurse practitioner. She looks at Little A's g-tube hole and tells us it looks like it's almost healed up and that some granulated tissue is in the way. I tried to explain to her about the yogurt a few days before, but she still felt it looked fine. She put on some silver nitrate to help with the granulated tissue and 15 minutes later we were on our way...only told to come back if it got worse or didn't improve. We thought this was it and we were worried for nothing.  We went on a family vacation to the beach for a few days which was still a high anxiety situation since the hole was not completely closed. While there we ended up using an antibacterial waterproof bandaid to keep the site somewhat dry on the beach. That band aid really backfired on me because I did not realize it was antibacterial and not to be used on sensitive skin. Little A literally had a square shaped rash around the tubie site and he was leaking. I was so panicked and felt so guilty. Using cortisone cream and then just a skin protectant we were able to clear up the rash from the band aid, but unfortunately the tubie site still wasn't cooperating.  For a few days straight after breakfast, Little A was leaking through his gauze. I couldn't deny it, it looked like the milk he just drank. Only thing was, this doesn't happen every time he eats or drinks and it's not an excessive amount. It only happens in the morning, then the rest of the day the tubie site looks like it is trying to heal and close. This causes us to make excuses, but now it's almost 2 months since the tube has been removed. We either need to buy stock in a company that makes gauze or see the doctor. We do the rational thing and see the nurse practitioner again. All morning and the way there I have in the back of my head that I know what the answer to all of this is going to be, and I try to keep it at the back so I don't make myself crazy. At first she looks at it and thinks the same thing she did last time, that the granulation tissue is keeping it from closing completely, but then we made sure to explain the leakage and how it looks like milk.  In hopes her answer to the problem will be different we also explain how it's weirdly only in the morning. Inevitably her answer is that Little A is going to need stitches that are done in the OR (a nice way of saying surgery to close up the stomach). None of the surgeons are around in the office of course to confirm that, so next week we have to go all the way to the city for another 15 minute appointment with the surgeon in order for him to come to the same conclusion and schedule a date with the OR. The positive note is that she did not feel it was an emergency because although he is leaking a bit it is not enough to cause Little A to be dehydrated or lose weight. In fact, he gained a few ounces in the 3 weeks between appointments with the nurse practitioner. I am trying not to freak out and cause myself too much anxiety every day leading up to a surgery not even scheduled yet, but it is really hard to think about your baby going through that. My mom keeps reminding me, if at 2 weeks old this 5lb something ounces baby was able to make it through surgery to get the tube in the first place without any problems then he is going to be absolutely fine for the next one.  Little A is one strong kid! The hardest part is going to be dealing with a hangry baby that day. I just wish that I could make all of this go away already. 

Update: the surgeon had said that more often than not the stomach does not close on it's own and surgery is needed.  It is a routine surgery and Little A will be going home the same day as long as there are no complications. The surgery date is September 17th at 6am.  Little A is a strong little boy and will be fine! This momma can't wait for it all to be over.  

And Little A is off the tube!

It has been exactly 10 weeks since we last pumped any milk through Little A’s tube and it was only about 3 oz.  He has been drinking all of his bottles and eating all kinds of foods (Bamba is his absolute favorite snack). We have increased his food intake to about 4 oz 3x a day and of course snacks along the way and he determines the amount of milk he will drink daily (we try between 18-24 oz).  On June 27th, we went to the Swallow therapist and she was so pleased with him. Little A not only showed her how he can eat strawberries and blueberries, but he showed her how he takes bits of his veggie straws with his front teeth and moves the pieces over (sometimes with the help of his finger) to the side of his mouth for chewing.  She gave us a rubbermaid straw cup to start practicing with him. Well after two tries with the therapist he did not need her help at all to get water to come up the straw. He did exactly what he was supposed to. He continues to work on it with different straws, but if he sees any kind of straw you bet Little A is coming over to try to take a drink.  This weekend Little A also mastered drinking his milk from the sippy cup lid on his bottle, but when he is sleepy he prefers his bottle nipple (and yes he knows the difference just by looking at the bottle)! Today, July 1 we took Little A to see a G.I. in hopes that we could finally get the g-tube that we have not used in 2.5 months taken out. After explaining why Little A had the tube put in in the first place, how we haven’t used it in months and how his swallow therapist gave us her OK, the G.I told us there is no reason to keep it in.  It was taken out and we were told how to take care of it the spot. Think of it as the hole in your ears if you have your ears pierced. If you never wear earrings the hole closes up. The same thing for the spot where the g-tube was. It should heal itself and close up completely within 2 weeks. We just need to use a mixture of butt cream and mylanta on it , so Little A’s skin doesn’t get irritated from any stomach discharge. At this point, changing some gauze for a couple more weeks will be a piece of cake. Fingers crossed it closes by itself, so we don’t have to go back for a couple of stitches. I can’t even begin to describe all of the emotions I felt by the time we got back to the front of the office.  I was excited that this was finally happening; I was in disbelief that we really made it this far in literally 12 months; I was feeling like one proud mama bear for all of the hard work Little A did; and feeling grateful to my husband and mom who helped get Little A here! I had tears of happiness rolling down my cheeks by the time we got to the car and didn’t know who to text first. Thank you to all of our friends and family who showed us so much love and support….It helped us keeping going and keeping pushing ourselves and Little A whenever we were able to celebrate the small stuff with all of you! Only thing left to say is: Little A did it! He is off the G-tube! I am grateful that he was able to get nourishment from the g-tube as long as he needed it, but I am even more grateful that he no longer needs that support!

New Trial: Little A in charge

After the last visit with the swallow therapist my mom and I decided that we would give Little A a few weeks of getting used to his new schedule before a new “trial” idea of just on demand feeding.  As in a previous post Little A was doing well with his new schedule of bottles every 4 hours--giving him some more time to eat a meal, play and longer naps. With traveling down to Little A's other grandparents house for passover, his schedule was off and Little A decided he was going to make the rules.  He let us know when he wanted to drink his bottle and when he wanted to nap. I’ll admit it made me a bit anxious to relinquish all of the control to Little A...but that anxiety eased with every ounce he drank. By the end of the day I was just one excited mama because he drank 27 oz out of a total of 30oz! For the rest of the week, Little A only had 3 or 4 ounces go through his tube during his morning bottle time.  The rest of the day he drank 26 or 27 ounces total by bottle. He took a morning nap of about 2 hours and in the afternoon sometimes he took a 30 minute catnap followed by a 1.5 hour nap later on. We kind of still set a limit on when we wanted each bottle done, just so that we did not get overwhelmed at the end of the day. For example, his “11 o’ clock” bottle had to be done before his 1 o’clock nap. That being said, we didn’t expect Little A to sit down and drink the 7.5 ounces in the bottle before he was allowed to do anything else.  We tried to get him to drink 2-3 ounces before he could go play with his toys for a little while. Sometimes Little A even wanted to eat some purees and puffs before he drank. In just seven days he really proved that he can tell us when he is hungry and when he is tired. There are times of the day that were a little bit of struggle to get him to finish the bottle when all he wanted to do was play with his toys. We are finding ways to get him to calm down and finish first. One way is to go to a dark extra room with less distractions and another if we put his wearable blanket on he thinks he is getting ready for a nap.  These two strategies have been working so far. Also when we are out and about and Little A is bored in the car seat or stroller he does some great bottle drinking! The best part of this one week trial….on the 8th day we decided to give Little A the chance to try not using his tube at all and he did great!! He drank 31 ounces all out of his bottle for the first time ever! There are no words to describe this feeling...and how my dream and goal to have him off of his feeding tube by his first birthday is actually real! It was the greatest feeling in the world to not fight with Little A to sit or stand close to the feeding pump pole.It was the greatest feeling in the world to not think about that tube at all today. It was the greatest feeling in the world for Little A to just eat, drink, nap, and play like every other kid his age! It was the greatest feeling in the world to not worry about his outfit being accessible to his tube! [People take for granted being able to just put their kid in a bodysuit onesie and some pants.  After 11.5 months, I am so used to making sure Little A’s shirts/clothing have snaps or buttons down the front or cutting a hole and making a patch in a body suit...all for easy access to his tube. For the first week in about 11 months I walked into a store and didn’t have to make sure the outfit would work for Little A. Although I realized at this point my brain is so trained in that, that I do it when looking for gifts for other babies too. I put a sleep and play back on the rack because it is a zipper not snaps only to remember not everyone has that problem. The other day in Carters I almost screamed with excitement at my mom because Little A needed a pack of short sleeved bodysuits to wear with some pants he has…”He can wear the same clothes as everyone else!” ] As I have happy tears rolling down my cheeks, it is really hard to put into words how I truly feel. I am so thankful for my mom who helped every step of the way of this drinking and eating journey. Together we have used our common sense, asked some questions, and figured out the next steps.  We would rejoice together when Little A reached the goal we set for him and discuss what to do next and if we thought he was ready. She was the first to say after 7 days of only one tube feeding that Little A is ready to show us what we can do without that tube. When I was feeling a little bit anxious about the amount left in the bottle at the end of the day (and Little A fighting because he was tired), she was the first to say there is no turning back now. She is right...no going back! If he can do it once he can do it everyday...he just might need some encouragement or time but he will do it! I am starting to feel relieved and giddy that the end of this feeding tube is really in sight. I also feel if this little boy can overcome this, he will be able to do anything he puts his mind to in life! He is only going to be a year old, but he has accomplished so much already! He is one strong little guy and there is no stopping him. After his 1 year doctor’s appointment, when we get to tell our favorite Pediatrician how amazing Little A has been doing since we have last seen her, we will reach out to the swallow therapist again to tell her as well and see what the next step is.  We are positive that by the summer, everyone involved will agree that Little A’s tube can be taken out and the physical healing will begin. Until then, we will keep on smiling and celebrating each day that Little A continues to drink all his bottles and not use his tube at all! If you are someone who has a child on a feeding tube...don’t give up or become complacent. With therapy, practice, time and some faith they may be able to get off their tube one day too. Little A is where he is today because we put in the work and time to get him here.

Little A: "I did not use this pump today!"

Little A update: April 2019

Little A is 10 1/2 months old already! Where has the time gone? He has come so incredibly far in these months. Little A does his own variation of crawling because now that he realizes he can stand up and take steps he doesn't want to stay on his knees.  He cruises around the ottoman and takes steps with his baby walker. Little A makes sounds and giggles. He has found his hearing aids and thinks pulling them down is a fun game (I can tell you it's not fun, but the audiologist laughed and said good luck for another year - it's just what they do). Little A has finally gotten teeth! Currently we can see the two front bottom teeth, but we think the top two are on their way. He often holds his own bottles while drinking and lounging on the couch as only a couple of ounces of milk run through his tube.  Little A loves to eat yogurt, baby oatmeal and any of the Gerber purees as long as they have a sweet taste. He loves to eat bananas in a mesh teether-feeder, so we don’t have to worry about him swallowing too big of a bite (we hope to brave letting him try a whole banana piece soon). Little A has started eating Gerber puffs and has even surprised us by picking it up off the tray himself and bringing it to his mouth. We are just so happy and proud of this little boy!

On Thursday, March 28th, Little A, both grandmas and I went to two appointments in the city.  The first was with a nutritionist who was semi-helpful. We thought that a swallow therapist who set up the appointment with the nutritionist for us (after seeing her in January) had passed along information. We were wrong as when she came into the room she asked us what brought us to her.  Basically, we started from the beginning of Little A’s feeding story and ended with we really hope to get him off his tube this summer. So we left that appointment with just the idea to see how it goes with feeding him 7.5oz of milk every four hours and continue our three meals of solids a day in between.  Nothing that we couldn’t have figured out on our own or with the help of our local, amazing pediatrician. My mom (Grandma JoJo) and I decided we will give LIttle A a few weeks on this new schedule to help him better understand his own hunger cues before experimenting on our own. I can tell you though our future idea is to be brave and let go of this schedule.  We will make 30 oz of formula in our Dr. Brown’s pitcher and just make sure it is gone by the end of the day by reading Little A’s cues and just offering him the bottle. He has already shown in smaller opportunities--like when we are out shopping--that he can drink a whole bottle at his own leisure. We will also discuss more of the milk/solids ratio with the pediatrician in May at his 12 month appointment.  The second appointment of the day was with a swallow therapist. She was so happy with how he drank his bottle as well as how well he ate the puree mixed with baby cereal. We also showed her how Little A eats the Gerber puffs and she was pleased for the most part with how he moves it around his mouth so it melts down enough to swallow. She told us we could even try veggie sticks since they also melt. Little A does need to strengthen his chewing a bit, so of course she gave us a tool to help set us up for success.  It is called a chewy stick - they come in different resistances (we got yellow the easiest and red which is a level up). We dip it in his food or crunch the puffs and put the crumbs on it. Then we put it on the side of his mouth and he chews on it (alternating sides to help strengthen both). Little A likes to chew on it--teething probably helps with this aspect. We will make another appointment with the swallow therapist either in May or over the summer to hopefully determine that Little A is ready to have his feeding tube removed.  It literally brings happy tears to my eyes to think about how this little boy went from only getting a taste of milk off of a pacifier to drinking whole bottles (at times) within a year. He is already one amazing dude! I hope this shows other parents who are in similar situations to have hope, set a reasonable goal and practice with your child as much as you can (don’t only rely on the therapists or specialists, but do the homework). When you believe in your child, there is no limiting what they can accomplish!

Little A lounging on the couch while drinking his bottle and his tube is running

mesh teether-feeder (makers: munchkin) 

chewy sticks

             

BAHA: Bone-anchored what?

 I never realized or even really thought about different technologies that are out there these days that are changing people’s lives.  So when Little A was born with tiny ears (microtia) and no opening to his ear canals, I just thought we were going down the road with a child who is deaf and I was ready to learn ASL.  Within hours, though, a member of the hospital’s craniofacial team was using the acronym BAHA and telling us Little A will have a chance to hear within a couple of months. At first I had no idea what they were talking about—what is a BAHA? What do they look like? How do they work? I quickly started to research on google and Pinterest. BAHA stands for bone-anchored hearing aids.  As young children the processor part of the hearing aid snaps onto a special headband. The headband holds the BAHAs tight against the bone. When they are older if BAHAs are their only option to hear it can be implanted onto their head. My simple understanding of how BAHAs work is that they vibrate the sounds against the bones (process of bone conduction) which then sends signals to the inner ear, nerves and ultimately the brain. These days the processors are pretty small rectangles compared to what they have been.  The sound processors and soft bands come in a variety of colors. For girls, I have seen on Pinterest people add flowers or bows to the soft bands and it just looks like a regular headband. For boys, I guess they could wear a hat. The light brown I picked out for Little A without even seeing it first, happens to blend with his hair so well. I have bought a couple of baseball hats and made a winter hat for Little A, but I rarely use the hats to hide his BAHA softband. I don’t want him to think he HAS to cover it up when he’s old enough to make that decision—just want him to know that he has the option. I am not embarrassed and if someone stares or asks, I’d gladly tell them that thanks to these devices sticking out of the side of his head, he can hear! Isn’t technology amazing!?! Another cool thing about technology is these hearing aids come with a wireless microphone.  We use it, especially in crowded places like restaurants, so Little A can hear 1 person clearly over everything else that might just sound like noise. When he is older he won’t need other headphones because his BAHAs will connect to his phone with Bluetooth.

       Little A first received his BAHAs (thanks to the help of E.I) in October when he was 5 months old.  That audiology appointment was exciting and nerve wracking. We couldn’t wait to see his reaction to hearing for the first time.  We were quiet when the audiologist first put them on (after showing and telling us about them). Then with Little A on my lap and my husband’s phone camera ready to record, I said “Hi baby, it’s mama.”  At first, Little A sat quiet, probably not sure about what was happening. I spoke some more and then his eyes welled up and tears came rolling down his cheeks. It was very overwhelming for our little guy.  We finished up with the audiologist and took Little A home, with him listening to his dada narrate the drive home. We gave Little A a break, since it was time for a nap anyway. The 2nd time we put them on he cried as well.  It was a bit heart breaking, but I just kept in mind he will get used to them. One thing that was tough was balancing the amount of time he wore the BAHAs with everything else ( feeding, sleeping, tummy time). Slowly we figured it all out and it helped as he got older.  As Little A was awake e and sitting up more , he wears the BAHAs more. Also, if he is in his high chair or car seat where more feedback is likely, we just center one BAHA processor on his head. One is better than one. Only recently, has Little A tried to pull the soft and off and more out of curiosity.  He also likes to touch the sound processor with his hand or lean it against the side of his high chair—we think he likes the sound of the feedback. At least then we know he isn’t bothered by the sound when we are inter mood for a quick snuggle and can’t help but hold him tight while his BAHAs buzz with feedback.

         In just a few months the BAHAs have made a big difference for Little A. He loves looking at and listening to people talk.  He really loves playing and hearing the instruments he got for Hanukkah or hearing a squeak other toys make. Little A is even starting to make his own sounds and babblings. I am so thankful for this technology and how much it has helped my little boy!

Litte A wearing his BAHAs while standing

The bluetooth mini mircophone. Connects to the BAHAs to amplifly the speech from person wearing it

The BAHA up close.  The little door that is open is where the battery goes.  The tan Circle is that part that vibrates and connects into the softband. 

Failure: what I wish I didn’t feel

Little A has a cold; slight fever; and teething...meaning it was a pretty sleepless night. Now unlucky for me, I am a light sleeper these days and my husband is a very deep sleeper. Like four alarms or a kick from me to get up kind of sleeper.  In other words, I am the night shift for Little A pretty much by myself on the few occasions he is up. We are lucky to currently be living with Little A’s grandparents—so it is grandma to the rescue when I am at my breaking point. In the beginning, I felt a little better about asking for help in the middle of the night as a brand new mom. Today though I am feeling a bit like a failure. Yeah, I get it even though he is 8.5 months old, I am still a new mom learning things along the way. I just can’t shake this feeling today.  I have experience with babies and kids. I am an Aunt to 7; I was a toddler teacher; I am a special education teacher. I guess all of those experiences are during day time hours and I was able to get child-free rest. Still, Little A has been so good and really only has trouble in the night when he doesn’t feel well; I should be able to handle it on my own. At first I went in to just see if he needed the pacifier, but he only got more hysterical. I picked him up and he was feeling warm still, but it was another hour before I could give him more tylenol.  I thought if I held him we could doze a bit and then I could give him tylenol. We got comfortable, all snuggled up and well at least Little A wasn’t crying anymore--as for sleep, that wasn’t happening. I tried to close my eyes for a bit, but he was starting to wiggle. Finally, it was time to give him tylenol--luckily he likes the grape flavor and took it with ease. I rocked him a bit and put him back in the crib and thought “ok, it should start working soon and we’ll be good for the rest of the night.” Boy, was I wrong. He slept for about 30 minutes. I went back in his room and went down the mommy checklist:  cleanish diaper? Check. Medicine? Check. Clean nose? Check. Hungry? Maybe...should I get milk? He rarely wakes up in the middle of the night due to hunger, but yup! He wanted the milk and seemed satisfied after a few ounces. Maybe he also just wanted to snuggle. He cried in the crib, but then he cried when I was holding him too! “Aahh...I am so tired...I’ve tried everything on my mommy checklist.” I can’t wake the hubby--he will just be groggy and confused. I am afraid I am getting closer to hitting my breaking point--I have to call in grandma. Not only was it the edge of my breaking point--It is my point of failure.  It’s ok to let him cry a bit because if the grandparents could hear him then grandma would come to help anyway. If she doesn’t step in, then she isn’t bothered by Little A in the middle of the night and Grandma thinks/believes I have it under control. I feel like a failure because I asked her to step in. I hate doing that, especially in the middle of the night because she does so much for Little A already (caring for him all day while I work). FAILURE because if we lived in our own house I wouldn’t have a “bail out.” FAILURE because I felt I wasn’t helping Little A. FAILURE because I didn’t imagine mommyhood to be so hard at times.  

I know being a mom is going to have its challenges.  I need to start believing in my own ability more. Even though my start to mommyhood wasn’t what I thought it would be and I have some extra challenges, I still strive to be as close to perfect as you can be.  I am hard on myself when things are difficult or I am tired/frustrated. I have to remember its ok to feel knocked down by these challenges, but especially as a mom, I need to get back up quickly. It is even ok, to ask for help back up if you are lucky enough (like me) to have the support.  When I feel like a failure, I need to remember I am not the first mom to be going through challenges, and I won’t be the last. As long as you are loving, caring and trying your best than you are succeeding at this mommy thing!

No Shame in Early Intervention

As a special education teacher, I know the importance of Early Intervention (E.I.). But now, faced with it as a parent, I understand a lot more.  I now understand it all from the parent perspective. You want to get your child help, but it is hard to admit that something is not typical or they are behind in some way.  Every parent wants their child to be ”perfect” (whatever that even means). We got Little A evaluated for early intervention as soon as we could—well there is a bit more to that story, but it is not necessary to go there.  With the help of a great friend and an email, the OT from the NICU sent a referral to our local E.I. From there, the process was quick in our county at least. A county service coordinator called and set up evaluators to come to the house. They watched Little A drink from a bottle (since feeding was a big concern); looked to see if he responded to sound (I knew he wouldn’t); and looked to see if he tracked objects to just name a few things. The evaluation process gave me very weird, mixed feelings.  On one hand, I was sad because Little A couldn’t check all the boxes, but then on the other hand I was almost rooting for him to “fail” so he would be eligible for the services. The evaluators were so kind and encouraging throughout the process. They kept saying “don’t worry we’ll get him the services he needs” and he doesn’t do it YET, but he’ll get there.” After the evaluators wrote up the report they met with us and the county service coordinator to create goals. At this first IFSP meeting, speech and physical therapy were recommended.  In New York State, feeding issues are addressed by E.I speech therapist. This is not the case in other states, so we were lucky with that. By the end of the month, Little A started physical therapy (PT) and speech. E.I also covers the cost of his audiology visits and hearing aids. Without E.I., Little A wouldn’t be making so much progress and we would have some larger bills to add to our plate. It is nice to have this support during this time. Little A’s 6 month IFSP review is coming up. He has made progress with his hearing—the BAHA’s have made a huge difference.  I love listening to him make sounds verbally or with his toys. Physically, we are told he is meeting the typical milestones and is where he should be. PT will continue 1x a week to make sure he doesn’t fall behind. Speech therapy is going to increase to 2x a week since he is responding well with the BAHAs to get him as much language acquisition as possible. As daunting as an IFSP meeting can be because you don’t want to hear about what your child can’t do, REMEMBER: he just can’t do it YET! He will get there at his own pace. Also, think about his accomplishments and how far he has come  When I focus on that for Little A, I am such a proud mama! Little A is going to be AMAZING!

What does the future hold?

It is hard to believe sometimes that Little A is 8 months old already.  Time seems to be moving fast. He has made so much progress in these past months and that makes me so happy.  I try to stay in the moment with him each day—celebrating even the smallest accomplishments. I can’t help wonder, though, what does his future hold? This time I actually think about it in the same way a parent with a “typical” child may.  I mean, I know his future holds a surgery or two, but beyond that... Little A is currently an easy-going little boy who rarely cries. He seems happy-go-lucky and smiley. Will this all stay the same? Is it just a deep part of who he is? I really hope so.  Little A loves to snuggle with me and is clearly a mama’s boy. Will he always want to hug me or talk to me about anything and everything? I’m sure this will not be forever and teenage A will not think it’s cool, but maybe he will come back to it someday. Little A is interested in all his new toys and new things around him. I hope he is always curious and enjoys learning. I want him to gain as much knowledge and skills that he can.  I want him to find his passion in life and pursue the path he wants. Maybe an accountant like his dad and grandfather or an engineer like his uncle and grandpa or maybe something no one else does in our family. Whatever path he chooses, I just hope he is living his best life!

        As parents of ALL children, we can’t predict what the future holds.  We can, though, instill values and morals in our children. We can take the necessary steps to set them up for success. AND most importantly we guide them through their hopes and dreams….be their biggest fans!

Where to start with bottle feeding a Tubie?

**Disclaimer: we are not medical professionals or therapists.  We did what we were comfortable with as long as we felt he wasn’t in danger.  If you are not comfortable then you should follow what your doctor or therapists advise only**

When we left the hospital with Little A on the g-tube, it was very scary not knowing what the exact steps would be to get him drinking from a bottle.  In the NICU we were not allowed to feed him a bottle, the speech-swallow therapist was the only one. We were allowed to dip his pacifier in the milk and give him tastes.  This is what we left the hospital doing. When Little A appeared to “master” that and seemed to enjoy it, we moved onto the next logical step for ourselves. (Meanwhile we were in the process of setting up Early Intervention, which in NY can provide some help with feeding, but we weren’t going to wait around until this started).  Next we took a bottle nipple and filled it with a few drops of the milk and allowed him to suck. For the most part he did really well. Maybe there were a couple of times that he coughed because it didn’t go down quite right, but we immediately stopped, sat him up and patted his back and he was able to catch his breath (when this happened, we usually stopped for that moment and tried again later in the day).  We gave him as many chances to drink this way as he wanted. It not only gave him the taste of milk so he didn’t get an aversion, but it also gave him the chance to practice his coordination of sucking, swallowing and breathing. When Little A was doing well with drinking about 8 mL from the nipple and seemed to want more, we moved onto our next step. We created our own tiny bottle using the nipple that comes with the sample formula and a 30mL tube that came with my medals breast pump. We did this instead of just using a regular bottle because it allowed us to have control of the flow. We slowly added more milk 10mL, 15mL, etc. until we reached 30mL (1oz) all over a couple of weeks.  Now I was getting excited, he could drink a whole ounce (although it took him 30-45 minutes to do so). Now almost 2 months old, and we had him drinking a small amount from a bottle. When he mastered drinking 1oz, usually meaning he could drink it consistently at every feed for a few days, we would push him to drink a little bit more. We have gotten Little A to drink 5oz from the bottle a handful of times, but usually it’s over an hour. Currently, we are extremely happy with him always drinking 4oz in about 20/25 min while 2oz go through his tube (something his belly couldn’t always handle, but does now).  Since Little A is 8 months old we are working on eating solids. Once he eats more food, the 4oz bottle will be all he needs.  Like stated earlier, we aren’t doctors or specialists….we are just a mom and a grandma using our knowledge, experience and common sense. Just because it worked in our situation doesn’t guarantee it will work in yours.  At the very least it should give you hope and a starting point. Don’t be afraid to try!

The Swallow Study

The first time I heard the words “swallow study,” was back in May when Little A was only a week old.  Swallow studies are done to determine how milk goes down when he drinks and make sure it is the correct pipe.  Little A was brought down to the radiology department of the hospital. They mix some barium into his milk. Then as they feed him the bottle the radiologist takes a series of x-rays.  When they put them in sequence you can actually see the liquid flowing down. Back then, unfortunately, Little A aspirated---meaning he couldn't coordinate sucking, breathing and swallowing so the milk went down his windpipe.  That is why the feeding tube was put in and he started off with tastes of milk from his pacifier.

      Little A has come a long way already at almost 8 months old.  For the past 2 weeks he has been CONSISTENTLY drinking 4 oz of milk from his bottle every time.  He eats baby cereals, fruits and vegetables from a spoon and pouch. He even thinks he is a big boy and tries to feed himself from the pouch. As far as we can tell he doesn't aspirate (or no more than any other baby). On occasion, he coughs like the milk starts to go down the wrong pipe, but only when he is distracted and it is not every time he drinks the bottle (like in the beginning). At the suggestion of his Craniofacial Team, Little A is having another Swallow Study done tomorrow (1/8/19) to ensure he doesn't aspirate while drinking a bottle or eating his solids.  It is being performed by a specialist in NYC. The appointment is unfortunately between his feeds and he can't have any food or bottle for 2 hours prior. Let's just say I am not looking forward to dealing with a hangry baby. I know how far Little A has come so far and I know that he has been doing well with his drinking and eating, but I am still worried about the results. Is he going to cooperate? I keep praying that he stays focused and doesn't have his once in a while coughs or aspirations during it. I just want good results to show all those doctors the hard work my mom and I have done with Little A has paid off with only the guidance of his E.I speech therapist.  Hopefully it doesn't take too long to get the results--i definitely can't deal with that anxiety.

1/8/18 The results are in and Little A is doing Amazing!  After parking and walking a couple of blocks I realized I left the bottles I made in the fridge at home...oh boy!  Good thing there is always formula, a bottle of water and an empty bottle in the diaper bag and the crisis was averted quickly.  When we got to the speech and swallow center, we had to wait of course. Luckily though, since he was a baby fasting for about 2.5 hours at this point, the receptionist made sure the speech therapist didn’t diddle daddle long.  We followed her back just to her room and I was a bit confused at this point. She asked us some questions and then just wanted to see him drink and eat. Little A was bringing his A game. He not only sucked down about 2 ounces of that bottle, but did it without dripping or coughing. He got extra points for showing her that he can even hold the bottle sometimes.  As he drank she listened with the stethoscope to his breathing. She could tell that due to his narrower windpipe he stops to take a few more breaths than maybe a typical baby therefore takes him a little longer to drink. But he is doing great coordinating his sucking, breathing and swallowing with no aspiration! She said he sounded a bit congested, but it sounded nasally and not like liquid in his lungs (all good signs!).  The best news was she didn’t feel it was necessary to do the barium test in radiology at this time and felt it was only necessary when we were ready to take his tube out just to double check everything was fine. Then she watched him eat some banana puree off the spoon and said he sucks off the spoon. She showed us how to put the spoon in, wait for him to close his mouth around it and pull the spoon out so he scrapes the food off.  Other than that, he was moving the food around in his mouth correctly and swallowing without a problem. Little A has accomplished the harder goal of drinking, swallowing and breathing and coordinating eating food and taking breaths is an easier task. The next thing we are working on with Little A is eating more solids. We really feel once he accomplishes this we can be on the road to weaning from the g-tube. In March we are following back up with the speech/swallow therapist and a nutritionist to hopefully make a plan to wean him off the tube ::fingers crossed::

Am I being oversensitive?

When caught up in this roller coaster ride we call life is it possible to be oversensitive? I am not getting political here and am not talking about the current climate in this country. I am specifically talking about my own personal feelings on my specific journey.  Is it ok for me to feel like life isn't fair just because someone around me is going down the “typical”path I did not get to go down? I am told by friends and family that it is normal to feel this way. A few have said they would be more concerned if those thoughts didn't cross my mind at all.  They are all happy that I am comfortable enough to talk to them about it. I just want to know if there is a point where maybe I am going to far and being a little too sensitive. When around people,especially those that don't really understand what a day in the life of Little A is like, is when the feelings become the most confusing.  I am a little envious that some things like feeding, change in schedule and leaving house are a little easier. All things that give me huge anxiety and stress when not in my own environment that I am used to. The stress always gets worse when things are not going exactly what am I used or how I want them to go. I know you're thinking “ok that all makes sense and doesn’t seem like being oversensitive.” The possible over sensitivity comes after the stress and anxiety is at its capacity.  I have no more room for any other emotions...and one more tiny thing is going to make me feel like I am going to cry. Things that can tip the roller coaster down the hill are possibly unintentional comments in passing; not being excited with us about a personal goal Little A has accomplished; seeming like you don't how to interact with him; and only focusing on what he still can’t do. If in a short time span a couple of these things happen, I can usually brush it off and at least for the moment not let it get the best of me.  I try to give people the benefit of the doubt. Maybe they don't realize how that comment could make me feel or they are showing they care because they want to know what else he needs to do. Eventually though all of those little things build up inside me, especially if multiple things happen in one short time, and unfortunately I explode in my safe space with my husband (shout out to him who deals with crazy me on top of what he may be feeling) Some of it is just frustrating because for 7 months Little A has been growing and improving each day.  He really has come so far. Plus it makes it easier to get through each day when we focus on how awesome our little boy is and not what the future still holds. I always say let's live in the moment. I haven't said anything to people right in those moments because I am afraid I am just going to be told I am being too sensitive and over thinking things. I am afraid that I am going too far and do not have the right to feel hurt over the little things. Even if is being over-sensitive they are still true feelings I have. Right now I do not know how to change that...maybe I will just get used to it or numb to the things I can't change.  

Tube feedings + Bottle feedings: There is no right way

Everything about feeding is trial and error. Is it a stamina issue? Does he know what hunger is? What do we do about both of those things. The first thing we did was never let a feed go longer than the hour the feeding pump would run.  We always offered the bottle first and whatever he didn't drink went in the tube. As it is, by the time that ends you feel like you are starting the process all over again for the next feed. Some days it feels like all we do is feed him. When that hour is all through the bottle at least you got some extra snuggle time. Now that he rolls and wiggles a lot..the less milk we run through the tube, the better.  It is getting harder to have him sit while the milk runs through the tube. We are starting to think it is a stamina thing and he needs to also realize his hunger. He has the ability to drink about 2oz pretty quickly when he wants to. At times he seems like he drinks enough by bottle to get that weird feeling in his tummy (hunger) to go away. Then, since we stay on a schedule, he doesn't have a chance to think about that weird feeling again because we are running the rest of the milk through the tube.  We recently tried one day of on-demand feeding to see if he would tell us he was hungry--meaning we will see what he drinks out of the bottle every 3 hours and catch up to the necessary daily intake with a tube feed while he slept. This lasted one feed and then I chickened out, feeling that he isn’t ready and there needs to be another way. I will revisit this “trial” after we have the swallow study done and we know that all the milk and food goes down the correct pipe. Until then, my other strategy is to have all the milk in (via tube and bottle) within 30 minutes. That is the typical time it takes other babies to drink a bottle.  Let’s try getting him to consistently drink 3 oz in 30 minutes for a couple days then we will push him to drink 4 oz and so on. So we put 3 oz in the tube while he drank 3 oz from bottle and all is complete within 30 min. This now creates more time before he needs to eat again with the hope that his tummy feels hunger for the next feed. Maybe he will get the idea soon. It finally did not feel like all we did was feed him. He also had more time to play and roll around--working up an appetite. Below is what the week looked like. I think it may be working. The days that we had some trouble, I will say staying consistent, is largely due to his teething.  He has been showing that he gets the idea of hunger, but the pain of his gums at times causes him to not want to drink.

**Note: Anything he didn't drink out of a 6 oz bottle was fed through his g-tube at the same time**

Day 1: 4 out of 6 bottles he drank 3 oz.

Day 2: 5 out of 6 bottles he drank 3 oz.

Day 3: The first 2 bottles of the day he drank 3 oz. The last 3 bottles we pushed him to drink 4oz

Day 4: All 5 bottles he drank 4 oz.

Day 5: He took a short nap and after a little playing was actually screaming for the bottle. He drank 4.75oz in only 30 mins.  The other 4 bottles he drank 4 oz.

Day 6: The first 2 bottles of the day he drank 4 oz and then we were on the go for 2 more where he still accomplished 4oz both times.

Day 7: Drank all 6oz of the first bottle of the day, but it took about 45/50 minutes.  The second bottle he drank 4 oz. He woke up screaming after a very short nap (he is teething badly), so he was very sleepy during the 3rd bottle feed and only drank 3 oz.   Drank 4 oz for last 2 bottles

Day 8: He drank 4.5oz for all 5 bottles.

Day 9: He drank 4.5oz for all 5 bottles.

Day 10: 1st bottle he drank 4.5oz. The 10am bottle he drank 3 oz in 10 minutes and a total of 5 oz.  (He also had about 1 hr 10 min nap that he woke up from himself. Then about 20min to play). 1pm bottle he only drank 3.5oz after his physical therapy session because he was so tired from not napping (we have to adjust his schedule a bit for Wednesdays at least). Woke himself up after a 2 hour nap and drank 4.5oz at 4pm. Didn't nap again and only drank 4 oz.

Day 11: The first bottle of the day he drank 4.5 oz. He struggled a bit for the 10 am bottle and only drank 3 oz. For the 1pm and 4pm bottles he drank 4 oz. He drank 4 oz of the bottle at 7pm.

***Note: We will continue to do this as long as it seems to be working and push him a little bit more every few days. Little A has a swallow study coming up, so we will check back in after that if we change anything up and start a new “trial”.***

Little A's G-tube Emergency Kit

Little A's G-tube Emergency Kit

I keep Little A’s G-tube Emergency kit in his diaper bag.  It is important to have this with you at all times. Just incase I can’t get the new tube in or for some reason the kit was taken out of the diaper bag, I also keep gauze and extra tape. Should something happen to the tube that is in the child, our doctor told us we could always keep that tube in, put gauze over and tape it down….Then we must head straight to the ER.  Thank g-d and knock on wood, we have not actually had any emergencies. I have only the changed the g-tube on my own terms and I would like to keep it that way.

The kit includes:

• 2 syringes:  1 to take the water out of the old tube’s balloon and 1 to fill with 4 ml of water for the new g-tube balloon (I like to have it ready)
• Little bottle of distilled water to inflate balloon
• KY jelly: to lubricate the new g-tube button, so it slides in easier. IMPORTANT it must be water-based and not oil-based
• Mic-Key button
• Gauze: to keep a sterile environment and place the syringes on and new gauze for around the tube
• Medicine cup: I find it easier to pour water in there to suck it up by the syringe
• Bolus feeding tube extension:  To attach to the new button once it is secured in the stomach to make sure the tube was placed into the stomach correctly.  If it was stomach content will come up the tube extension.

Tubie Time 101

Feeding tubes are sometimes a necessity in order for a baby to survive! It doesn’t mean the child will be on it forever. It doesn’t mean you are a failure as a parent. It doesn’t mean that your child is lazy.  It means, for a variety of reasons, your child needs help getting nutrition. It can be scary and stressful at times, but you will find as a parent you do what is necessary for your child.

When we were told the only way to bring our child home sooner rather than later was to have a feeding tube put in, my emotions were all over the place.  Excited for the light at the end of the NICU tunnel, but worried and terrified for what that all truly meant. Before we knew it he was having surgery at two weeks old to insert his feeding tube.  Now, surgery on an infant is the scariest and most nerve-wracking thing to experience as a parent. Once it was finally his turn (at like 3 p.m.--so the poor guy didn’t have any food all day), the actual surgery only took an hour.  They originally told us they would come out and give us updates, but since it went so well and quick they didn’t. My mom and I were starting to panic that we hadn’t heard anything and we were about to talk to the liaison nurse, when the surgeon came out and told us everything went well.  Now I thought the waiting period was going to be the worst part, but they decided to leave him intubated overnight because of his smaller windpipe and seeing him on a ventilator was very difficult. It took all my power not to cry...I quickly kissed his little feet goodnight and rushed to the waiting room until my husband was ready to leave. Little A’s first g-tube was the long tube (the tube part stayed in the whole time and there was a plastic ring at the base on top of the skin) because our surgeon felt that was more stable.  The next day, the nurse showed me how to clean under it and care for the site. She also started to show me how to use the feeding bags and feeding pump. To jump ahead a week to the day before Little A was finally getting discharged from the NICU, I met with the representative from the feeding home therapy company (we were lucky to use CVS Coram at this point). Our representative brought a pump, the backpack, and a g-tube and walked me through each step to make sure I was comfortable using it. During this time I just thought about how thankful I was that the nurse had shown me step by step for a couple of days now too for extra practice.  The Coram Rep gave me her card, and told me in a few hours the local to home branch would be reaching out to me, so that 5 days worth of supplies would be delivered that night and then in a couple of days the rest of the supplies for the month. Everyone at Coram was nice and easy to deal with (not just on this first day, but throughout our time using them). That night, I watched a few youtube videos about the Kangaroo Joey Feeding Pump features and how to use it as well as about caring for the site of a g-tube. I wanted to make sure that I had all the information I needed. The next day I packed the feeding pump into its little backpack and was ready to go to the hospital to take home my baby.  Of course it was time for a feed when we were finally discharged. I even impressed the nurse with my easiness of using the pump and its backpack already. I was really in the mindset of I am going to do whatever it takes to bring my child home. It took about a week for my mom and husband to learn the ins and outs of the feeding pump and now we are all pros. I practically did it in my sleep for months.

I am unfortunately the only one who, besides changing the gauze around it each day, really cares for the g-tube.  I think my husband is too nervous about it. His anxiety of the g-tube became worse the day Little A got the g-tube button (which my mom describes as an air mattress valve). Let me step back a bit...in a follow up visit with the surgeon, we found out that he doesn’t have the g-tube buttons in his office like we thought he did.  He wrote us a script, sent it to Coram for us and told us to make an appointment when we have it. Well before I ever made it out of the city, I found out that the insurance doesn’t cover the cost of the button, so we found a cheaper medical supply company online to get it from instead. About a month later, we were ready to get Little A the g-tube Mic-Key button and not have the tube part always hanging out.  Little did I know walking into the doctor’s office that day, that I would be the one who has to put the g-tube in. Now it makes complete sense why they had me do it, so I would be able to change it in the future without having to go to them, but it was so scary. At this moment, I was so happy that I read the directions booklet that came with the g-tube just out of curiosity because it really helped me better understand the directions the doctor gave me.  She told me what to do, prepared the new g-tube button and took out the old one. My stomach was in knots, hands shaking, but I did it! Little A cried a bit, but we were assured that it didn’t hurt--well actually he screamed literally until we put him back in his carseat where he knew that nothing else was going to happen to him. We quickly got used to putting in and taking out the extension tubes. Not having the tube hanging out all the time made tummy time easier and the worry of it getting caught and yanked out subsided for me. My husband is still nervous that something will happen with the button and I constantly explain that it would have to be pulled really hard to come out.  

I have only had to change out the g-tube button once at home.  I hope it is the one and only time and that we can wean Little A off the tube completely before it has to be done again.  His first g-tube button lasted 4 months. They usually last about 4-6 months, which makes sense since we have lots of acid and juices in our stomachs.  When I realized I had to change it out, without the doctor’s supervision, I quickly became very anxious. I just knew that it wasn’t sitting on his stomach right anymore and there was a lot more blood and discharge than there had been. I put his changing pad on the kitchen table because it had the best lighting and then gathered everything I needed that I keep in his emergency kit.  I laid out some gauze, tested the balloon on the new g-tube to make sure there were no problems with it, then lubricated it and filled a syringe with 4 mL of water. With a shaky hand, I inserted an empty syringe and extracted the water in his current g-tube. I tried to pull it out, but was having trouble and this made me very nervous. I started to freak out and thought “why is it not coming out?” and then I quickly went to Google. I read it could be difficult and to just twist around and use a little bit more force. I took a deep breathe, thought about the first time I did this with the doctor’s help, and then it came out.  All of a sudden, I was just doing every step like it is my everyday job. I inserted the new g-tube, filled its balloon with water and put some new gauze around it. I did it and Little A was ready to be fed! So far we have survived 7 months of Little A’s life and 3 g-tubes.

Background Post: Where our TCS Journey Began...

On May 14th at 5:53 a.m. Little A was born 3 weeks early and after 30 hours of labor. There were no words to describe the intense love we already had for this little human. Right away we were  getting many texts and emails full of love from friends and family just wanting to know all about him. But,I personally was struggling with what to tell people and most of the time just said "thank you, He's well or fine". They would ask for pictures and I didn't know what to send because I didn't want people to know what was going on. I wasn't ready to say out loud and make it real...that it has been nothing that I thought and less than a week old it's already been a tough road. Unfortunately looking forward it won't get easier. We wouldn't have made it this far without the love and support of our families. The grandparents are not only in love with their new grandchild but ready to help us and support us in any way to make the path less scary. Right after he was born I got to hold him immediately before they took him to find out his stats. That is when we found out his ears were very tiny...one has a very narrow canal and the other canal is all closed up. Ok I thought hearing can be fixable...or as my brother said we will all learn sign language. He's still our boy! He was given back to me and we snuggled and the nurses helped try to feed...and said all newborns take time. It was all going pretty well...we got moved to our new room. A nurse took him to get a bath just down the hall and would be back in 20 min. I closed my eyes and next thing I new I jumped awake realizing it's been longer. I was about to go see what was happening when a doctor from the nicu came into my room. Little A had aspirated as they were starting his bath and had some trouble coming back from it so they brought him to nicu for observation. Well what we thought would just be an overnight observation in the nicu turned out to be more. Little A was able to breathe on his own perfectly fine but he had trouble when it came to feeding. He forgot to take breaths while eating and continued to work with feeding specialists. We kept praying he would figure this out sooner rather than later, but in order to bring him home we opted for the feeding tube. Three weeks later, I was excited to bring home my baby finally, but it was very scary as well.  When they decided he could be discharged, I had just 24 hours to learn how to care for his g-tube (feeding tube) and how to use the feeding pump. With all my adrenaline running and the desire to just have my baby home I no longer had time to feel scared or worry about anything….I just needed to learn and do whatever it would take to bring him home. Discharge day still sticks out in my mind…my mom came with us to the hospital. We were finally those people carrying the empty car seat through the lobby knowing it was going to have a baby on the way out. Little A had to have a car seat test before his discharge was official and so he sat in his car seat on the NICU floor still hooked up to the monitors for 90 minutes….he passed! Best feeling in the world, no matter what the journey ahead was going to look like, was walking out of those hospital doors with our baby in his car seat. We wouldn’t have to have that guilty feeling anymore as we left the hospital because he was with us. Since leaving the hospital in June, there have been quite a few doctor visits. After some genetic tests and talking with the Doctors at the NYC hospital, it has been determined that Little A has Treacher Collins Syndrome (TCS). At the time all I knew of TCS was the book Wonder and the movie from a year ago.  (Side note: As a Teacher, that book had become my favorite book because of the great message of showing kindness before my son was ever diagnosed.   It is still my favorite book and I will continue to use it in my classroom every year to spread the message.) We are learning so much more about TCS including how it is a spectrum.  There are some cases that are really severe and others that are so mild that they don’t even know they have it. Little A falls to the mild-moderate part of the scale. His outer ears are like little nubs with one canal completely closed and the other canal is very narrow.  We know that some sound gets through. His swallowing and bottle feeding issues were partly due to his jaw being set back a bit therefore causing his tongue to be too far back. His airway and esophagus are also on the narrow side. We are thankful that he did not have a cleft palate or lip.  On the more severe end of the TCS spectrum, cheek bones, eyelids and all of the bones in the face can be affected. TCS is the mutation in certain genes that affect the growth of the facial bones during pregnancy. Unless it is very severe and you know to look for it, it is not easily detected in ultrasound. TCS should not affect his intelligence--just appearance and hearing. We are lucky that just looking at Little A it is not so easy to see that he has something going on, since we have found that ears is not something most people notice.  It is more obvious when he has his BAHA’s (Bone Anchored Hearing Aids) on or we are feeding him through his tube. But I have decided it is not something I am going to be embarrassed about. This is my normal and I’d rather spread awareness and educate the world than hide. Little A will have some surgeries in his future to create ears and hopefully provide him hearing with the BAHAs.. Although he has made really great progress so far with his feeding/swallowing...he still has a bit more to go in order to get off of his feeding tube.  We do have a goal for ourselves and great hope that he will get there.When we first brought him home he was just getting tastes of milk off of his pacifier. Now at 7 months old, he has drank 5 ounces from the bottle a few times. We just keep hope and keep trying everyday.  Whenever we get frustrated we just try to remember where he started not too long ago.  As new parents this may not have been the road we expected to take, but we will do anything in our power and control to make sure that Little A feels all the love and happiness his family and the world has to offer him. We wouldn't trade him for anything! We are so thankful that our families and friends have shown us so much love and support.  That is has energized us for this journey ahead. We decided to share our story and journey in hopes that it will help someone else who just found out they will be on this ride as well or someone who has been on it, but felt alone. Supporting each other and spreading kindness will help make the world a better place for Little A.