Monthly Archives: July 2013

Wordless Wednesday: Sweet Laughter

I know the idea behind Wordless Wednesday is to show a picture that “speaks for itself,” but this video of Braxton totally counts too, right?

Braxton is pretty much always wordless, but you can always count on him to make you smile without having to say a single word…

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Filed under Family, Kids and Family, Special Needs Child

Texas Parent to Parent Conference

This weekend I had the great pleasure of attending the 9th Annual Texas Parent to Parent Conference.  The TX P2P conference is attended by families all across Texas to find and share resources.  There are also sessions to help families along the journey.  I met so many families and really enjoyed the sessions I attended.  I was able to attend thanks to U.R. Our Hope.  I volunteered to help man the table in the exhibitor room and also be part of a parent panel during one of the sessions and in return my conference fee was taken care of.  Truly incredible.

Thursday, I signed up to attend training to become a Parent to Parent Support Volunteer.  In the training, I met many other families who came in to this special needs journey quite unexpectedly.  As I listened to everyone share their story, it was obvious that although our children all had very different struggles, there were so many similarities in our paths and we were all connected by the love and courage to fight for our children.  I’m so excited to officially be a parent support volunteer.  I feel as though I have grown so much in the past 2 years and have a wealth of resources available to me and would love to pay it forward and help other parents in any way that I can.  I really look forward to receiving parent matches and becoming a mentor to families along the journey on a more personal level.

Thursday evening, I also attended a meeting with Dr. Bruce Cohen where he spoke about Mitochondrial disorders.  It was very informative and interesting to hear from one of the experts in the field.  Dr. Cohen gave a great overview about what Mitochondrial diseases are and some of the advancements being made in the research to help correctly diagnose so many children.

U.R. Our Hope TableOn Friday, I attended several sessions and also sat on a parent panel in one of the discussions.  First, I went to a session on “Grief and Stages of Adaptation” which is a continuation on the training in becoming a parent support volunteer.  The session gave really great insight to the process we all go through when learn about our child’s diagnosis.  Understanding the research behind the fact that all parents do grieve the loss of the life that might have been while coming to terms and building new dreams in the life that is now before us was so helpful.  As we learned about all the stages and processes in which we all go through, I recognized how true they were for my own journey and I know now that I can recognize these stages in the journey of others which will be essential as I help to mentor parents who are new to this journey.

After lunch, I attended the session given by Dr. Mary Elizabeth Parker, medical liaison for U.R. Our Hope.  In her session, she talked about the diagnostic journey and resources for obtaining a diagnosis.  Myself and one other parent were on her parent panel and told our stories about our children and how we finally came to a proper diagnosis.  We were able to share our experience and answer questions for others who are also on the journey.  Dr. Parker talked about several cases she has personally worked on and how the healthcare system failed some of her patients which ignited her passion to help other families so that they don’t have to go through that.  We had some really great questions and feedback from the families who attended the session, and I’m so proud to have been a part of the discussion.  I hope that these families connect with us or find the resources they need to finally attain the peace of mind that we have.

The final session for Friday, was given by our speech therapist and another therapist in Houston about Augmentative Communication.  We are so fortunate that our own speech therapist is so well versed in using Aug Comm with patients and can’t wait to get started with Braxton.  I was excited to attend to get an overview on what options were available and how to get started with the process.  I did learn a few things that I hadn’t already talked to our speech therapist about and hope other parents who attended did too!

Friday night, a few of our friends of U.R. Our Hope went out for dinner to chat and just hang out at a local restaurant.  It’s always nice to attend these meetings and talk with other parents about their experiences.

Dinner with U.R. Our Hope

Dinner with U.R. Our Hope

 

Saturday was a short day for me.  I helped to cover our table in the Exhibitor room while Dr. Parker held another session about Mitochondrial disease and Autism.  I’m sure it was great!

U.R. Our Hope

 

 

I had to leave at lunch to help Joseph DJ a wedding out of town. Needless to say, it was a very long couple of days for me! But it was so rewarding! I was able to make a lot of new connections with other resources and other families who are also on the journey.  I definitely plan to make this conference each year! I’m so thankful to have been a part of it this year and look forward to the new opportunities that have arisen from participating.

 

 

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The Early Days (Part I)

Today marks 2 years since Braxton’s discharge from the Neonatal Intensive Care Unit (NICU).  As I mentioned in a previous post, I’ve re-lived those first few days over the past few weeks and although I’ve written about bits and pieces throughout the past year, I finally decided to write everything from the beginning.

Here is Part 1 of The Early Days – All About Braxton’s NICU Stay

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2 years ago, nothing could have prepared me for this journey. I clearly remember leaving our apartment at the crack of dawn, we arrived at the hospital, I got checked in, changed, did all the last minute tests and was hooked up to all the monitors. I waited what seemed like forever for the Dr. to come in and say it was time to go. We were having a scheduled C-Section because my 1st daughter was CS when she stopped responding to contractions (perfectly healthy now by the way) but my Dr. and I decided I should have a repeat CS to avoid any complications.

Nervous, anxious, and excited I walked back to the operating room. My daughter ran up for one last hug, she was terrified that a baby was being cut of me. I never explained in detail (she had just turned 6 at the time), and although I tried to reassure her, she was still scared of mommy being hurt. Reassured her one last time, and off I went.

Everything went well. At 7:58 am Braxton Joseph was born weighing 8 pounds 8 ounces and measured 21 inches long. We had a healthy baby boy and we were beyond excited.

Meeting Braxton for the first time

Meeting Braxton for the first time

 

I was wheeled over the the recovery room and waited for the nurses to finish their preliminary check on Braxton. Finally, they brought him to me to see him and try to feed him. We fell fast in love with our little boy.

Holding Braxton for the first time.

Holding Braxton for the first time.

But slowly, things unraveled.

I couldn’t get Braxton to breastfeed. He was coughing and sputtering everywhere. I thought I was doing it all wrong. I’ve done this before. What’s going on? The nurse came and tried to help and then she took him from me to the nursery. She said they’d bring him to me after while and told me to rest. My doctor brought Aileen in because she was really worried and wanted to make sure I was okay. After a while they wheeled me over to room where my family waited.  We all anxiously awaited the nurse to bring him back.  Dad and some family walked over to the nursery to try and see him.

Dad hanging with Brax in the nursery.

Dad hanging with Brax in the nursery.

A while passed and everyone returned, but I hadn’t seen my son. I called the nursery and asked them to bring Braxton to me. The nurse came and said she would be back to take him to feed. I was devastated. They formula fed my child despite my wishes to breastfeed and they weren’t going to let me try again. His blood sugar had dropped dangerously low and they were unable to bring it up with formula and were going to keep formula feeding him until his blood sugar stabilized. He was asleep when they brought him to me. We cuddled him, gave him lots of kisses, and took a few pictures and then the nurse returned.


I didn’t realize that was the only time I’d have with him that day.

Then, the world seemed to crash down all around me.

Hours later the neonatologist came in and finally explained everything. She began explaining that they had noticed several things “different” about Braxton. His ring and pinky fingers were webbed together, his 2nd and 3rd toes were webbed and crossed, his facial features weren’t “typical;” I was immediately dumbfounded and mad at myself for not noticing. What kind of mother doesn’t check her child’s hands and toes? I didn’t even notice! I was mad at myself. Then I was mad at the Doctor. This couldn’t be true. My pregnancy was PERFECT. I took better care of myself this time than I did the first time around. She also mentioned that Braxton had a severe heart murmur on top of not being able to maintain healthy blood sugar levels.  A million thoughts ran through my mind in that instant and then the Dr. brought what little joy I had left to extreme panic and anxiety. She reported that Braxton was being transported to a NICU at another hospital and I couldn’t go with him. I sobbed. I was mortified. How could they take my child away? I hadn’t even really seen or held him. Neither had any of our family. Everyone waited around and never got to meet him. His sister, oh his sister! She was so overjoyed and she hadn’t even had the chance to see him. I sobbed uncontrollably. Joseph held me and we cried together. We had no clue what was happening, why it was happening or how it would all turn out.

At 9:00 pm, Braxton was rolled in to my room in an incubator. I couldn’t even hold him before he left. I stuck my hand through the small opening and held his little hand until the Doctor told me it was time to go. Shortly after, I demanded a nurse come in and help me remove my catheter and get me in my own nightgown from home. 14 hours post C-Section and I was walking around determined to be with my son. Joseph followed the ambulance to the other hospital and did all of the paperwork to get Braxton admitted while I sat in agony 13 miles away desperately waiting for any kind of news. I called my mom, who was already 40 miles away and just 15 miles from being home in San Antonio, and she turned around and drove right back to the hospital. I didn’t even know how to explain everything, but she sat with me until Joseph returned. When he came back I was a wreck. He told me everything the admitting Doctor told him and tried to reassure me that Braxton was okay. He told me the admitting Doctor had a far different story than the Doctor who had him transported. He didn’t hear the murmur the previous doc did and he did his best to calm Joseph down. We learned that Braxton would undergo several different tests that night and in the coming days. Blood tests, genetic tests, brain ultrasound, an EEG and an EKG. My poor baby was going to have to go through all of this without me.

All I could think about was seeing my son. I saw him all of 20 minutes his first day in this world and I will never forget that day. How I felt, what I thought, the fear, the uncertainty, the angst.

I was released from the hospital the next evening; a mere 36 hours post C-Section. It’s amazing what will and determination can get you through. We went home, unpacked my hospital stuff and picked up some other things and drove to the hospital where Braxton was.

That night we met Stacy. I don’t know her last name or if she even still works there, but I owe so much to that wonderful nurse. She sat with us most of the night answering question after question. She relayed all of the test results that were available. I learned that they thought Braxton had a seizure just before he was brought to me to be transported. The Doctor never told me this. But that’s why the EEG was ordered. I was mad at the doctor for not telling me. I knew it was because I was already highly emotional, but still I should have been told. Thankfully, the EEG was read as normal, but this is when I first learned that Braxton had unusually high muscle tone. Just before transport, because of his high tone he was very stiff and rigid and his hands were fisted and turned in, making the doctor think it was a seizure. Maybe it was, but it’s possible it wasn’t. I don’t remember how long we stayed that night, but I remember Stacy. I remember her sincerity, her honesty and her passion for this job and the little lives in her care. She helped me through the wires to hold my son, really hold him, for the first time in over a day since he came in to this world. She talked to us about the nasal gastric tube being used to feed him. She helped Joseph change Braxton’s first diaper. Something I wish I would have caught on camera, but it’s forever embedded in my heart. Joseph was so nervous and afraid of pulling off a lead or the IV. He used about 10 wipes for that first diaper change. Haha, welcome to the dad club. There were tears, there were hugs, there were kisses, and surprisingly there were laughs. Simply put, there was hope in the room that night. Hope from Stacy, hope from Braxton making slow progress, hope in our laughter, hope from the on-call Doctor that they were going to find us answers.

Those first few weeks were such a blur. We split our time between the hospital and being home with my older daughter, trying to find a way to explain it all even though we had no idea ourselves what was going on.

A FISH for Trisomy 13, 18 and 21 found no variances in those chromosomes.  A full chromosomal analysis also came back normal.  I thought we were in the clear, but the doctors were all convinced that something was very wrong. Every syndrome they threw at me had a life expectancy of less than a year. As the test for each syndrome came back normal, I breathed a little easier, but every time, someone was there to tell me not to get my hopes up. But, in those first few weeks, hope was all I had and I held on for dear life. As Braxton began to stabilize his blood sugars and regulate his body temperature he was transitioned to a less urgent level of the NICU. He was tested time and time again with a feeding team because he was still not able to feed properly. I pumped breastmilk fervently and brought with me everyday what he needed. He failed his feeding trials and swallow study several times. Braxton had already regulated his blood sugars, was able to maintain his body temperature on his own, and he was gaining weight. Feeding by mouth was the last piece we needed to go home. At 2 weeks old the doctors decided Braxton would need to go home with a feeding tube. We discussed the options and ultimately decided to proceed with a gastrostomy tube because it was evident that Braxton would need the tube long term.  Admittedly, we thought he’d be without it in no time, but looking back, the doctor knew it wouldn’t be so quick and that’s why the g-tube was decided upon. Braxton had his G-tube placed at 2 weeks old and we spent the next week learning how to care for him and how to use the feeding tube.

I had the opportunity to room-in on his last night. The hospital had rooms set up that were basically like hotel rooms where parents could stay on the last night to have hands-on “practice” to make sure they’d be okay before getting sent home.  Braxton’s crib was wheeled in and I got to hold and play with him. I was able to set up his feed with a nurse on hand just in case I had any questions.  We made it through the night. Finally, we were able to go home.

After 3 long weeks we were discharged with a list of symptoms, a list of doctors and therapists to call, a load of supplies, but no definite answers. Despite everything we went through in that time, the journey had only just begun.

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Reblog: What I Would Tell You

This is so heartbreakingly beautiful that I had to copy it over word for word. One, so I know you actually read it instead of following a link, and two, so that I could come back to it whenever I need some help getting through the hard days.  There are many times that I want to reach out to another special needs mom, but I can never seem to find the right words to say.   I don’t know her story, where she’s been, or where she’s at on this journey. Does she even want to hear from someone else who’s “been there”? I know there was a time I sure didn’t care about anyone else’s story let alone their advice or inspiring stories trying to tell me that it would all be ok.  If you are that mom, know that it WILL be ok.  There is so much that I could tell and I’d love to share, IF you are ready. For now, take the time to read this and find your strength along the journey and find comfort in knowing that you are NOT alone.  There is a sense of “sisterhood” amongst special needs mothers, and any one of us will welcome you with open arms and listen to you or offer our words of wisdom if you want to hear them, but if you just want to sit back and read and take it all in, that’s okay too. We’re here when you are ready.  This life we live is not easy and you don’t have to do it alone. With that, I leave you with this amazing post I came across recently. Enjoy.

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Originally posted at: Whatiwouldtellyou.com by Julie Keon

What I Would Tell You

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon
June 29th 2011

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The Day Braxton Became a Super Tubie

Since Braxton’s 2nd birthday I’ve been reflecting back on the past 2 years and the journey thus far.  Part of me is re-living every single day all over again and the other (larger) part of me is celebrating every day and the wonder that Braxton is. It’s all very bittersweet. I was also asked to write a guest blog post for another site about our story thus far and I thought it would be a great opportunity to write through many of the emotions I’ve been having lately.  However, when I went to submit my piece I found that the limit was 3 paragraphs and I had written well over 6 pages about the last 2 years.  I’ve been thinking about sharing the piece I wrote here instead, but then I thought instead of sharing it in it’s entirety, I will share it in pieces as I go through each of those early days again.   I didn’t start this blog until Braxton was about 13 months old, so there is a lot about his early days that I barely touch on in most of the posts.  While it will be good therapy for me, it will also be a good opportunity for you to see just how far Braxton has come and get to know him even better.

Logically, I’d start from day 1, but today, I’m remembering the day Braxton had his very first surgery at just 2 weeks old.

2 years ago today Braxton had surgery to have his G-Tube inserted.  I vividly remember everything about that experience.

Here is Braxton with the NG Tube

Here is Braxton with the NG Tube

Braxton had failed several trials with a feeding team who reported his poor oral tone made him difficult to feed.   A swallow study was also done and the test revealed that Braxton was aspirating everything he was drinking.  Each time he swallowed, the liquid filled his lungs instead of his stomach.  As this was very dangerous to his health, Braxton was being fed through a naso-gastric (NG) tube, which is a tube that goes from his nose straight to his stomach.  This of course made sure his food was going where it was supposed to.  Within his first week Braxton was able to regulate his blood sugars since he was getting his nutrition through the NG Tube. He was also gaining weight since he was actually getting everything he needed, and he was regulating his body temperature on his own as well. Each of these a critical step in Braxton being allowed to go home.

One morning, we walked in to see Braxton and the nurse stopped us almost immediately and told us the doctor needed to speak with us.  She paged him and we visited with Braxton as we waited.  When he arrived, I remember the doctor explaining to us that Braxton had reached 3 key goals that had to be met before his release.  The final piece was feeding.  Due to his failed feeding trials and the aspiration revealed on the swallow study, the doctor sat us down and discussed our options about feeding so that we could finally take our son home. The first option was sending him home with the NG-Tube and bringing Braxton back to work with the feeding team.  He went on to say that he really didn’t think this was ideal because an NG-tube was only meant to be temporary and based on reports from the feeding trials, Braxton was really going to need a lot of work.

The doctor showed us how the button would be placed through the skin to the stomach.

The doctor showed us how the button would be placed through the skin to the stomach.

Then, he told us about the Gastrostomy Tube (G-Tube). He drew a picture to explain it to us and told us this would be the best option so that Braxton could get the nutrition he needed and be released to work on feeding at home.  If the NG-Tube was temporary, in my mind, the G-Tube meant permanent.  I remember the fear we both had thinking Braxton was going to need this forever. It was also the first instance of realizing that Braxton would be different forever.

We went home that day and I researched G-Tubes and tried to wrap my head around it all.  I could not grasp the idea of a feeding tube.  What would it really look like? How exactly would we feed him? I felt it would all be so cumbersome and we’d never be able to go anywhere and if we did, everyone would see his tube.   I was mortified.  Would we look like failed parents? What would people think? What would they say? How would he be treated? I think those thoughts scared me more than the thought of the tube itself.  I could not find a single reason NOT to have the tube placed, and if it was really what would be best for him, it felt like it was the only thing to do.

The next day, we returned to the NICU and spoke to the doctor and had him explain everything again. One of the nurses also called someone to come and give us more of a hands on demonstration.  I remember the nurse bringing in “G-Tube Gina.” It was a doll they put a feeding tube on.  The nurse showed us exactly what the G-button was and the extensions and explained the procedure.  We felt a little more at ease about moving forward with the procedure, but still  we were scared about having to handle it all.  Within a few days, everything was set with the pediatric surgeon to come in and do the surgery.

Monday, July 11, 2011 we arrived at the NICU to see Braxton before his surgery.  We met with the pediatric surgeon and he again took the time to explain the procedure.  He would make a small incision below Braxton’s belly button and insert a small camera to guide him.  He would then have to cut through his belly to his stomach and insert the button.  It was a relatively simple procedure, but to a frightened mom and first time dad they may as well have been cutting off a limb.  I remember sitting with Braxton after he received the anesthesia and not being able to hold him.  The nurse told us he needed to be relaxed and that we could only hold his hand and no soft strokes or gentle touches.  We sat with him until it was time to go. I wasn’t able to go with him.  He was again wheeled off away from me and I just had to sit and wait.

The G-button

The G-button

The surgery really didn’t take very long at all.  The doctor came back up and reported that Braxton had done well with the procedure and the team was brining him back up and we’d be able to see him in just a bit.  I remember going back to the NICU room and seeing Braxton just waking up from the anesthesia.  The nurse showed us the button and went over some instructions on how to use it and how to clean and care for the button.  We were handed a folder with pictures, information and instructions.  Braxton’s feeds had been slowed down and with the new placement of the button we had to work our way back up to full feeds.  He was only given a very little amount every couple of hours to make sure he was able to tolerate the food plus the balloon taking up space in his tummy. The recovery time was 2 weeks.  However, instead of keeping Braxton the whole time, they told us they would keep him for the first week and then let us finally take him home.  The first week was critical in the healing of his stoma (the hole in his stomach around the tube) and it was very important the tube did NOT move at all or be wet.  The nurses were able to keep an eye on him and keep him from getting infected and the surgeon was easily able to come over and check him out each day.

Every day we visited they should us how to set up the feeding pump and how surprisingly simple it would be to feed Braxton.  A few days after surgery a representative from a medical supply company came to the hospital to actually give us the equipment we would take home and show us how to use it.  I was so nervous and scared learning about everything.  Joseph had already gone back to work so I really had to pay attention because I was going to have to teach him too! The learning curve was steep, but fortunately I did learn what I needed in that first week to be able to take Braxton home finally.

Looking back as my present self I can’t help but chuckle a little bit.  If I could go back to that time knowing what I know now I would laugh at myself and all the worry and stress that I had during those first couple of weeks.  Yes, it’s very scary when people start throwing terms around that you don’t understand, but it is really all going to be ok.  If I had told myself then that in no time you will be an expert I would have never believed it.

Braxton just hanging out with his tube

Braxton just hanging out with his tube

Braxton’s tube is now such a NORMAL part of our life I don’t even give it a second thought. When I run down the list of medical symptoms and equipment I often forget to mention his feeding tube because his tube is as much a part of him as his arm or his leg.  It’s funny when we see a different doctor at the pediatrician’s office and I have to run down a quick summary for them and then they lift his shirt to listen to his chest and say, “Oh, he has a feeding tube?” And I’m like “Ohhhh yea I forgot to mention that…oops” I forget that it’s different. As worried as I was about Braxton being different forever, I’ve now come to see absolutely no difference it all.   It’s just the way life is.  It’s our normal. His feedings have become second nature to us now and I never would have thought that sitting there in that chair 2 years ago as the doctor told us Braxton needed a G-Tube.

2 years later, we are pretty much experts with using his G-tube, caring for it and troubleshooting when necessary.  We’ve come a long way as parents since then and Braxton…well, Braxton is a completely different child than that little boy I held in the NICU.

Braxton began to really thrive after having his G-tube placed.  He gained weight a little too well and there were lots of adjustments in the beginning trying to find the right amount to feed him.  It was a little different trying to get the right sense of what he needed.  Typical kids will tell you when they are hungry and they eat until they are full.  A tube fed child doesn’t really know what it means to be hungry because they are kept on such a schedule.  There were days we had many appointments and we were an hour or two late with his feed and Braxton was just content.  No crying or fussing from being hungry or anything.

I didn’t realize it then, but his tube saved his life.  Without a feeding tube we would have taken Braxton home and continued trying to bottle feed him without success.  He wouldn’t have gained any weight.  Worse, he probably would have swallowed so much in to his lungs that we would have lost him.  I know now, his tube saved his life then and continues to help him live every day.  We are working very diligently with a speech therapist to get Braxton eat or drink anything by mouth, but having little success.  If he didn’t have his tube he would be completely malnourished and who knows what would happen. The alternative is definitely not something I like to think about.  Instead, I see a happy little boy who is indeed superhero like in every way since his first day in this world.  Braxton is a Super Tubie. A term coined by the Feeding Tube Awareness Foundation for all tubie children surviving and thriving thanks to their feeding tube.

Happy Tubie-versary, little man!

Super Tubie, Braxton

Super Tubie, Braxton

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