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.