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Monday, November 9, 2015

Post Revision Update, alert semi-gross photos

Well I am GLAD THAT IS OVER!!!! I have had quite a few people curious about how today went, so I thought I'd do a quick update. 

Noah did well all things considered. Last minute my husband decided to accompany me today, and boy am I eternally grateful he did. I hadn't expected to be able to hear my son's blood curdling screams in the waiting room, and it was unbelievably painful to sit there and listen to him so I stepped outside. Luckily the procedure was much quicker than I had expected and we didn't have to endure that torture for very long. He came out bloody and shaken, but stopped crying quickly and calmed down as soon as he got in our arms. Dr. Martinez came out and sat down and chatted with us until all our questions were answered. She. is. amazing!

The rest of our day was of course challenging, but I really think Noah handled it all as well as he could. He is on Tylenol, but still walked around with his fingers in his mouth trying to feel around and told me about every 15 minutes 'momma hurt.' He didn't want to eat or drink anything, but I  managed to get a little bit of Boost in him. The kid has always had a healthy appetite so I'm sure by tomorrow he'll decide he wants to eat something. 

The procedure itself was a little more invasive than what I had originally thought, but that wasn't too surprising since I already knew his language and feeding/swallowing issues were significant. See below for pictures that were as close to his situation as  I could find on the internet. 

This is what Noah's upper lip tie looked like when his teeth came him. He actually fell  and tore it partially a while back, but this is what he was working with until that happened.  This was one of the large reasons why he couldn't nurse. 

This is similar to what he looked like today. Since he had partially torn his like this kid too, his teeth were closer together. But they still had to go in and laser quite a bit. 

As previously stated in the last 3 blogs, the tongue tie was the issue we knew NOTHING about, but by far has been causing the most problems. His tongue tie was not just a quick clip, and then poof everything is better. The picture below is the closest I could find to showing what the bottom of Noah's  mouth looks like, but the diamond shaped wound is significantly larger of course because he is much older than this baby. 

Of course Noah isn't interested in eating... he has a wound under his lip, on the bottom side of his tongue, and on the floor of his mouth. Our next goal is to make sure these wounds don't heal back together, so we are supposed to stretch them on a daily basis. Otherwise we would have to have that awful procedure all over again. The lip I can handle, but the tongue he won't let me get near (or I will start losing fingers - an unfortunate challenge from doing this on an older kid!). So we're relying on our speech path to help us learn how to keep him using his tongue enough throughout the day so it doesn't close up. 

We'll take it easy for the rest of the week, and keep him on a soft, bland diet until he is interested in other foods. In the grand scheme of things, I have full confidence he'll be just fine. As of tonight, it feels like we are finally on the downside of this hill, and once he is healed I'm excited to see "Noah 2.0" as a girlfriend of mine stated haha. I'll update in a couple weeks after we have had some time to see how he is healing. I'm optimistic I will have a lot of good things to share about his speech, and improved chewing/swallowing capabilities (and hopefully expanded food preferences!). Thanks again for all of the support, and encouragement. I hope we have helped someone by sharing our journey and truly appreciate everyone who has reached out to us. I had NO CLUE how many mommas out there were in the same boat! 

Final Note:  I will never even begin to comprehend what is like to be a mother of a chronically ill child, a child with disabilities, or a mother who has lost a child. This journey of ours has opened my eyes a tiny bit to the relentless struggles those mothers face. It has given me a perspective that reminds me that this journey of ours, in the grand scheme of things, really is not that big of a deal. To be honest, it has been more challenging for me then for Noah (until today) because he has never known any different. We have had our moments but in the long run, Noah has always risen above, and I have confidence will be just fine. To those mommies out there who spend days, weeks, months, or YEARS even fighting for their little ones health my heart aches for you... and you are my hero. You have strength like I will never know. I pray the Lord carries you when you feel like you don't have the strength to keep going, and that He gives you supernatural comfort and peace only the Lord can bring. 

Love & Blessings, 
The Veggie Momma 

Sunday, November 8, 2015

Never Say Never: Revision scheduled tomorrow! A Noah Update

So I guess if someone is smart they should never say never.... of course I put my foot down and then had to eat my words last Thursday. I had decided I was never going to see another specialist for Noah's lip or tongue tie ever again since I had finally found someone who seemed to know what they were talking about (Dr. L). This was ignorant for me to proclaim, but honestly I have just been so exhausted by meeting all the WRONG people, I was content with settling for ANYONE who seemed like they even kind of knew what they were talking about in regards to Noah's issues. Go back 2 blogs if you have no clue what I'm talking about, and want to catch up!
To clarify, therapy has been going GREAT, and I have had peace about our decision to wait until closer to 3 to address his revisions... until I recently received the finalized report from the initial speech assessment. The report stated that after 3 months of therapy they would re-evaluate if Noah needed surgical revisions... well, I started doing the math and realized this would be falling RIGHT when our baby girl would make her debut... Yep, perfect timing let me tell you haha. Looking at the time line, I realized that if at that point the therapist thought he did need a revision, then life would be exponentially more complicated.. SO I decided to seek out one. last. specialist. This woman is a pedi dentist I have heard about a number of times, but she is in the Woodlands and I had no clue if she would be worth the drive or not... All the other million specialists I had seen couldn't help us, and my expectations just haven't been very high for anyone.. I guess I've become a little jaded and tired of hearing the same thing over and over again. But alas! This time it was different! 

FINALLY THE RIGHT PERSON!!!!!!!!!!!!!!!! Question: Have you ever been lost, and stopped a million times to ask people for directions, and felt like no one had any clue how to help you get where you going? Then... UREKA!  you finally find the one person who knows exactly where you are and exactly where you need to go... all of a sudden you're on the right road, and you FINALLY get to your destination quickly and swiftly. Dr. Martinez was 100% different than every other specialist I have been to, and was like a light in a dark room. 

A New Approach: She started off the meeting with a 30 minute power point presentation about tongue, lip, and feeding problems from birth through adulthood. She had pictures, definitions, scientific articles to reference, pre-and post-op expectations laid out. She showed exactly what a normal mouth anatomy looked like, and explained every single tongue/lip tie that could possibly exist. She took her time and was VERY thorough, it was obvious to me I had finally found someone who knew what they were talking about... and most of all she knew was was talking about. I feel like I have been speaking a foreign language to people for years, and when I spoke to her it was like she could finish my sentences... brilliant. 

Differing opinions: Dr. L who diagnosed both of Noah's lip and tongue ties, is still a good Doctor who knew more than the average dentist about ties, however she did not know the extent of what Dr. Martinez knew. She also had a totally different opinion about one particular thing. Dr. L had stated that it was OK for us to wait until Noah was three to have his revisions done. She did not feel comfortable doing the procedure on such a young child because she would put him under anesthesia to complete the revisions. Dr. Martinez clarified that her procedure would not need to be done under anesthesia, and that it is actually preferable that you have the procedure done as soon as possible after diagnosis. The reason for this is that if a child learns how to say a word it is more difficult to teach them how to say it correctly when they have learned it incorrectly, especially after their vocabulary has expanded from the age of two through three so drastically. Also his feeding issues would most likely not resolve without the intervention. She predicted that he would probably be a lot happier as well finally being able to use his tongue properly to eat and talk with more confidence... that almost brought me to tears thinking about how frustrated he has been with these issues from birth. 

A Final Diagnosis: Dr. Martinez did a much more thorough examination of Noah than any other doctor has done, even though she had to basically hold him down to do it. We found out he has a very high upper palate which apparently goes along with his lip and tongue tie. His lip tie is a type 2 anterior (front) tongue tie, which is different then what we originally thought was a deep rear tongue tie. Apparently these are more common and easier to diagnosis.... so she says...  I was absolutely dumbfounded that he had a front tongue tie and that again so many people had looked in his mouth and had never been able to properly diagnose it. She reassured me better late than never, but that in his situation he would have to have it done eventually at some point in his life anyways. FYI: Apparently lip, tongue ties and palate issues are along the same lines as cleft palates etc... who would have thought? I know that it sounds hasty that I saw her on Friday and scheduled the procedure on Monday, but after two years of searching for answers we can't find a really good reason why we should wait?? Especially since I have a newborn coming in approximately five weeks. Dr. Martinez also stated that Noah's  issues are most likely inherited from me, that I probably have the same tongue tie issues, and that our daughter might as well. 

Side note about our baby girl:  I asked about what to expect after birth, and she said that she would recommend getting her evaluated as soon as possible. Especially if we do not have confidence in the neonatologist at our hospital. The reason for this is, once the is damage done from nursing it is hard for a woman's body to heal when they have to nurse so frequently. She actually allocates slots during her day for mothers coming home from the hospital to bring their newborn babies by, to have them evaluated to prevent any type of nursing issues from the beginning. She is an hour away from our house, but I promise you if the neonatologist at our hospital does not instill confidence in me that she has a perfectly normal oral anatomy, then will we will be going by. The struggles my son has experienced over the last 2 years are not something I would wish my daughter to go through if I can help it. What is one hour wasted if she doesn't have them, versus 2 years of feeding/speaking difficulties...

Relief: I cannot put into words the relief that I finally felt Thursday with a proper plan moving forward. The days of watching my son spit up blood from nursing are finally going to be wiped away, and the torture we have been feeling from having to learn how to re-feed him at two years old hopefully will be alleviated a little . The frustration I feel from this two year long battle is finally starting to let up a little bit. I've had a few issues with resentment lately however, because I just cannot believe that I knew in my heart and soul weeks after he was born that something was wrong and NO ONE could help us!  I can never get the long hours back that I spent lugging him all over Houston to see specialists or erase the visions of on-going frustration I have seen in his eyes over the past year not being able to communicate with us, but I know in my heart that it all was a part of the path to get us to where we are now. In the grand scheme of things, I have always said I know that this is not that big of a deal especially when you think about children who are suffering from chronic disease processes or are born with congenital abnormalities. But it has been a mini bump in our road, and I'm grateful I can finally see the road starting to clear. 
Final thoughts: I feel a ton of relief that he does not have go to under anesthesia tomorrow. I'm also happy to hear the recovery is pretty quick. The lack of anesthesia though, means that they are going to basically put him in a toddler sized swaddler and hold him down for 20 minutes to do the procedure. I know there are worse things, and I'm grateful he won't remember this, I just hate knowing I'm willingly going to put him through pain, even if it is for his own good... Also we have 2 post-op visits that fall in the following 2 weeks. This means that I will be going to some sort of medical appointment 4 times per WEEK between my OB visits and his therapy for a couple of weeks right before Thanksgiving and then we have a baby coming! I need prayer for endurance for the next month because I just don't know how I'm going to have the energy to do it all, but I know it will get done. Noah will continue to need speech therapy as well because his chewing and swallowing is so messed up, and his language is so behind but we'll take that one day at a time. Also I expect progress will be expedited after the revision! For now, we're moving in the RIGHT direction, and that' s a very good thing.  

Thank you to everyone who has reached out to me with encouragement! Also, to the mommas who have messaged me privately inquiring about their little ones, I would love to connect you with Dr. Martinez. She is by FAR the only person I would recommend you spend any amount of time meeting with if you have any inclination about your munchkin having this problem. Will keep you all updated on Noah's progress post revision. In the mean time, keep fighting the good fight of trying to raise healthy little ones. 

Love and Blessings,

The Veggie Momma