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The Sweetest Word

For 6 years I have waited.

I have prayed.

I have dreamed.

In my dreams, I hear your precious voice. I feel the joy in my soul and pride in my heart with every spoken word. But, sadly, I awaken to see you sleeping and I know that it was just a dream. Sometimes, I  wipe the hot tears of sadness from my face as I squeeze you tightly and wish one more time, that one day, I will awaken to the sound of your voice.

Last night was different. As I lay next to you knowingly wide awake, the two of us, I heard it. The first word. It was just 3 little letters in a brief, fleeting moment. It was slow and deliberate. I quickly pulled out my camera and asked you to say it again. You spoke the word, beamed with pride, reached out for a hug, and then slowly drifted off to sleep.

As the video replayed, my heart leapt from my chest and I felt the familiar feeling of hot tears rolling down my face, but this time…this time, they were tears of joy. Never has the word “Mom” sounded so sweet and meant so much. This time, I cried myself to sleep happier than ever.

Lest I think it was a fluke, today, I have asked you time and time again, and every time I hear you say “Mom”, my heart melts.

You have had many sounds for so long, but today was the first time they held meaning. The first time you looked directly in to my eyes and said what I have been longing to hear. The first time they were more than a button on your iPad. As I listened to your baby sister coo and babble, my heart hurt thinking she would reach this milestone before you. You have worked so hard for so long, and today, that hurt was replaced with a renewed hope that soon, we will hear all of the words you have been waiting to speak. All the words we have been waiting to hear.

 

[The following is compilation of videos I have taken from last night and today. The first video is from last night, when Braxton first said “Mom.” The other clips are from throughout the day and include us talking and making other sounds so you can see the differentiation between his sounds and the very deliberate, “Mom.”] ❤

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4th Tubie-versary!

Every year, it is hard to think about Braxton’s birth and how long he was in the hospital. In the grand scheme of things, he wasn’t in there very long, but every year the weeks roll by and I realize how much LIFE has happened in 3 weeks and remember just how long it felt then and still feels now. A lot can happen in 3 weeks. Four years ago today would mark 2 weeks that Braxton was in the hospital and it is also the day he had his first surgery to have his G-tube placed.

Seeing Braxton for the first time after surgery.

Seeing Braxton for the first time after surgery.

The day Braxton became a Super Tubie is seared into my mind and every year I see just how much progress has been made. Braxton’s tube was placed because he was aspirating liquid into his lungs and he had extremely poor muscle control. He also had trouble coordinating the suck-swallow-breathe reflex. Drinking meant he forgot to breathe and breathing meant he didn’t drink, or if he breathed while swallowing the liquid ended up in his lungs instead.

The day the G-tube was placed, we were terrified. I remember feeling helpless. I remember arriving to the NICU early so that I could hold him and tell him he was going to be okay (even if I wasn’t completely sure myself), only to be told that I wasn’t allowed to hold him because the anesthesia process had already begun. They wanted him tired and calm. The nurse told me I couldn’t stroke his head or hand. Only firm touches. We stayed with him until he was rolled away and couldn’t follow. I sat in the waiting room putting on a brave face as the fear and tears built up inside. The doctor came up and told us he did great and we would see him soon. The whole procedure was maybe 30 minutes, but it felt like so much longer. Everything in the beginning felt like forever. We finally went back and saw Braxton swaddled up tight and the crash course began.

Four years later, I wish I could go back to myself and let myself know that everything was truly going to be okay.

Anyone who meets Braxton now, would never know there was ever a time that Braxton wouldn’t or couldn’t eat. He eats about 16-20 ounces in less than 10 minutes! For comparison, it used to take 20 minutes to get him to eat 2-4 ounces. The process was v-e-r-y slow, but we stuck with it and our speech therapist helped us through it. Braxton will pretty much eat anything as long as it is pureed. Scratch that, he will eat any of the pre-packaged baby foods. I’ve offered pureed table food like beans and mashed potatoes and he is NOT a fan!

We are working on food chaining again which is how we got him to eat different baby foods. I am trying to add in a little bit of pureed table foods into his meals so that he is used to new tastes and new textures. He can always tell when there is something different about his food. His body tenses up, he shakes his arm and head, and makes a face like he’s just been betrayed. It’s actually really cute. He will get there eventually, and we will keep on working with him.

For now, we only use Braxton’s G-tube for liquids since he still cannot drink on his own. We have been successful in getting him to take a few sips from a straw and an open cup, but he’s not too consistent just yet. He get lots of water and milk via g-tube to keep him hydrated.

Sometimes it is hard for me to look back and sort through the emotions from the early days, but when it comes to his tube I laugh at myself a little because we were so scared for no reason at all. The tube was the absolute best decision we ever made. Braxton has thrived and grown so much. He is doing incredibly well now and hitting milestones left and right. Something that might not have happened if he didn’t have his G-tube.

Another year with the tube, and we aren’t a whole lot closer to having it removed. And we’re okay with that! It’s no longer scary (minus the occasional pulling out of the tube – that is still scary no matter what) or different. We use it in public without shame. We don’t try to hide it anymore. It’s just a normal part of our life. Once he starts drinking on his own and maintaining his weight, we can have that discussion, but for now it will still be a part of him.

I’m so grateful for modern medicine and Braxton’s G-tube! He wears it proudly. 🙂 Happy Tubie-versary, Braxton!!

Braxton, the Super tubie. Strutting his tube proudly. (Photo by Grease Man Photography)

Braxton, the Super tubie. Strutting his tube proudly. (Photo by Grease Man Photography)

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Matters of the Heart

First, if you didn’t happen to catch the update I posted at the end of the last post, I’m sorry for leaving you hanging! All went well with Brax that day and he was back to himself in no time. I’ve also since that day received the results back from all the MRIs he had done.  His spinal MRIs all came back unremarkable, which is GREAT news! They did note scoliosis, which we already knew, but other than that everything looked good. There are no vertebral abnormalities and he does not have a tethered spinal cord. Yay! His Brain MRI showed a few changes, but I’m not quite sure about their significance yet.  The neurologist claims the report is exactly the same as his first, but it’s not.  We see him at the end of the month and I’ll talk to him more about it and see exactly what’s going on.  I don’t think it’s a cause for extreme worry or anything, but just need clarification.

Now that we have that out of the way…

Last week we also saw our cardiologist for Braxton’s 6-month check in.  Braxton has the Bicuspid Aortic Valve and Dilated Aortic Root so he needs to be followed closely to monitor any changes.  Overall, it was a pretty good visit.  Braxton is still stable and for having the abnormality, his heart is functioning exactly as it should. Always nice to get good news!!

Also, for the first time in 2 years, the doctor finally addressed my questions about what might happen long term.  The biggest concern is the aortic root.  That is the base of the largest vein in our body which leads to our heart and Braxton’s is quite enlarged.  Doc explained that his aortic root is just millimeters away from being comparable to the average adult.  The root has been enlarged since birth and it continues to get bigger, but is growing proportionately with him as he gets older so the doctor is not overly concerned just yet.  He wants to continue monitoring it closely because if it gets too enlarged, then we have serious issues.  If not monitored, the root could actually balloon up and burst, and if that happened there is really nothing that can be done.  He explained that even if that happened and the person was on the operating table with a surgeon right there nothing could be done to save the patient!  Pretty scary stuff.  Now I know why he never told me before!!

Now that we have a diagnosis and I’m in a place of acceptance, I think he could see that in my face and decided it was ok to tell me.  Admittedly, my heart skipped a beat as we talked, but I realized we were talking worst case scenario and we were far from that.  This is a situation we wouldn’t necessarily have to worry about until the root was double the size it is now, according to the doctor.  This is also something that would definitely affect his ability to play sports and other things as he gets older depending on the size of it as he grows.  Just further reason that he needs to go in for routine monitoring.

While, it is a little nerve-wracking to sit and listen to all of this, I’m grateful that he took the time to explain everything, and also ensure me that everything is ok right now.  Knowing about things like this now help me to prepare for later.  If something happened later it would be much more of a shock, but now that it’s in the back of mind I won’t be so blindsided.

As always, I remain hopeful.  Braxton is doing so well right now. He is truly thriving and making so much progress. The doctor was very pleased with our results and happy with the progress Braxton has made.  He reassured us that there is absolutely nothing to worry about right now with regard to Braxton’s heart.  I’m thankful for a doctor who is proactive and will continue to closely monitor our little man.  It’s always nice to find a professional who truly has the child’s best interests at heart.  We have been so blessed to have so many wonderful doctors and therapists always going above and beyond our expectations to take care of Braxton.

 

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