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Monday, December 21, 2015

Bittersweet Progress: A Noah AND Julia tongue tie update!

Well the biggest update I have from the last post is that our precious baby girl HAS ARRIVED!!!!!! She is 2 weeks old tomorrow,  and absolutely has been the most amazing addition to our family. She is 100% God's amazing goodness from her head to her toes. Noah loves her and though we are short on sleep, she is a sweet baby and we couldn't feel more blessed to have her in our lives. As suspected she was born with pretty much the exact same tongue tie issues as Noah, and that has been a journey in itself. I'll update on our little guy first, then fill you in on what has been going on with her thus far. To catch up on this whole story go to the October archive, and start with this blog http://www.blackplateclub.com/2015/10/even-doctors-make-mistakes-our-2-yr.html .

Noah bear: We had a rough last month with this little guy, but things are better now. Right after Thanksgiving he came down with Hand-foot-and-Mouth, which I think he caught from a play place at our local mall. Poor little guy, he was absolutely miserable... well both of us were really. I was huge pregnant, taking care of a sad little toddler, praying he would feel better soon and no one else in our family would catch HFM. This of course, led to a regression in the progress we had made with his chewing/swallowing therapy because he was in so much pain. I was upset, but felt optimistic once he started healing that if he got back into therapy ASAP that he would carry on. Then, the SLP center instructed us that he had to be out of therapy for 3 WHOLE WEEKS to prevent spreading the virus....the 4 week mark feel right when our therapist would be out of town, SO we have delayed therapy until January. I was very anxious about him missing that much therapy, but felt like maybe the Lord was providing an opportunity for us to rest from our twice a week sessions while we had a newborn. He has regressed a little more with his chewing, but is still better than he was. Also his speech is improving more and more every day, but he still has quite a ways to go with that also. I obviously do not have the one on one time like I did before to work on him with this juggling a newborn at the moment, but I'm optimistic the Lord will provide the time in the future and he will continue to progress. If I don't focus on the positives with him, then I stew in bitterness about the fact that he could have avoided all these trials and tribulations had someone been able to help us earlier on in his life.... SO I choose, optimism and JOY that he is progressing, even if it's slowly. He is talking more than he ever has, and even though it may be a differing opinion than ours most of the time haha, I'm still so grateful to hear his voice and what has been stored up in his heart all this time. Please pray we get back on track, and that he continues to make progress even in the midst of having a newborn sister around!

Now, Julia's journey: She graced us with her presence on 12.8.15, weighing 8 pounds 12 ounces, and was 20.5 inches long. She was quite the cherub and surprised us all with her her beauty rolls, even the doctor haha! As previously stated, I was pretty certain she would be born with some tie issues because they are genetic. They are along the same genetic lines as cleft palate problems, and the fact that I have them, and Noah did too I was suspecting she might as well. She also had daily hiccups in utero, which apparently is a sign as well according to Dr. Martinez. I felt much more optimistic that even if she had ties that we would be able to address them quickly, and avoid the night mare of Noah's feeding's issues that have been an issue for him for 2 long years. I also of course desperately wanted a normal nursing experience, and was hopeful this time would be different. She latched right away, but her latch was definitely not what I knew it should be. She could stick her tongue out much better than Noah could at that point, but I still wasn't convinced we were out of the woods.

Our plan goes awry: Because I used to work in the hospital I delivered in, we were very well taken care of. All of our nurses were AMAZING, and our post-partum nurse had actually just passed her lactation consultant exam. She was so very helpful, and tried everything up her sleeve to help us, but within 24 hours Julia had chewed me right up, the exact same way Noah had... So not wanting to waste time we requested to leave the hospital a day early, and head straight to see Dr. Martinez to get it all sorted out before it got worse. Then the devil appeared in the form of moderate jaundice and changed all our plans. We were scheduled to see Dr. M the day of our discharge, and our super awesome nurse did everything in her power to expedite us leaving, but ultimately we were stalled by bilirubin labs and missed our appointment with Dr. M. We had to reschedule for 2 days later, and my hormones got the best of me. I sobbed, and sobbed, and sobbed.... I had flash backs of unrelenting pain, sores, and situational depression from not being able to nurse Noah, and I was inconsolable (I primarily blame the hormones, but there might have been a bit of PTSD in there as well). I got my self together, and decided to stay hopeful, but my dreams of having a quick fix for nursing problems slowly diminished.

One mountain after another: Jaundice is stupid, and felt like a nail in the coffin for nursing for us. My son was at risk for jaundice because we had different blood types also, but nothing ever came from it. Unfortunately with Julia, hers was cause for concern and compounded our nursing problems. When my  milk came in she was too sleepy to nurse frequently and could only be aroused every 5ish hours to nurse (a side effect of the jaundice). Add not being able to nurse effectively because of her mouth, and you have a recipe for poor milk supply establishment. We also had to have blood drawn daily for 5 DAYS, which caused us to have a crazy stressful schedule. Then we were instructed to give her formula because she wasn't having enough wet/soiled diapers to clear the jaundice, and she was really limited by how much she could nurse because of her ties. If we didn't give her formula, we were being threatened with having to admit her to hospital for photo therapy... needless to say she had some pretty significant nipple confusion on top of everything and we both were quite frustrated.

Finally we get a diagnosis: The Friday after she was born we were finally able to make it into Dr. Martinez's office. Within minutes she was diagnosed with the most severe lip tie you can have, and ALSO the same anterior tongue tie Noah had. Her upper palate wasn't as bad as Noah's though, which was good news. I wasn't terribly surprised, and was ready to have it fixed. It took less than 10 minutes, and was much less traumatic than Noah's because she didn't know what was going on. She latched immediately after, and there was noticeable improvement. It was definitely worth the time, effort, and resources it took to get her seen so soon after birth... but not all was fixed immediately unfortunately.

Side note: I asked the neonatologist at the hospital to inspect Julia's mouth for lip ties to see if we could get them revised before we even went home. She looked in her mouth, and then proceeded to tell me she was completely normal... I told her about my history, and Noah's, then she basically said that nursing is painful and that I was paranoid... I could have punched her in the face (and I'm not even kind of an aggressive person)... but I didn't (of course). I promptly ended the conversation, and got her out of my room as soon as possible.  I told Dr. Martinez what she had said, and she told me to give her grace, because she didn't know what she didn't know... whatever, that doctor was insensitive to my concerns and insulted my motherly instincts. She will not be getting a recommendation from me anytime soon.

Fast forward to today: I sincerely thought the revision would fix all our problems immediately but unfortunately it has not. Progress has been slow, and seriously painful still. I'm off the hydrocodone and am slowly healing, but 2 weeks later we still aren't out of the woods. We have had to 'stretch' her lip and tongue wounds 6-8 times/day to make sure they don't reattach (which she hates of course). She nurses for literally at least 1-1.5 hours every time, and my supply is slowly being built up. I still have to teach her how to latch every time, and unfortunately am having to use my pump more than I had planned just to get pain relief. I have had a good cry almost daily out of frustration but am focusing on the fact that we are SO much farther then we ever were with Noah. I keep reminding myself that any progress is definitely something to be thankful for. I had glamorous dreams of this all being so much easier, but ultimately I think the Lord is teaching me patience, and daily reliance on Him. Which is by FAR the most important thing for any parent to focus on from day to day with little ones.  I have flash backs of Noah being underweight and hungry for the first 4 months of his life, and have to remind myself that will absolutely not be the case this time. We KNEW what the problem was this time, and are slowly moving forward. I'm optimistic we'll get there, I'm just taking it day by day at this point. I also am truly grateful to have an otherwise healthy baby, and fully realize things can always be worse.

Final Note: I wanted to give this update because I have had SO many people inquire about how my kiddos are doing, and they have been curious about how all of this works with early intervention. The one thing I continue to see is that time after time people are getting misinformation and are incredibly frustrated/confused by the differing opinions from their Pediatricians, ENTs, or dentists. If that is you, do yourself a favor and just go see Dr. Martinez. She will give you the answers you're looking for, and she doesn't push a revision if you don't want one. Trust your heart mommas, it's usually right. Regardless of whether nursing ends up being successful this time for us or not, I'm happy to know that we have fixed an issue that would not have simply gone away. She would have suffered from the same speech/chewing/swallowing problems as Noah, and knowing that we are preventing those gives me peace it was the right decision.

Will update again soon hopefully with even more progress. Hope you all have a lovely holiday and Happy New Year!!

Love, Blessings, & MERRY CHRISTMAS!!!!
The Veggie Momma 


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 

Wednesday, October 21, 2015

Our Little Chipmunk, Wk 1 Speech/Feeding Therapy Update

I have had quite a few people ask how speech/feeding therapy has been going so I thought I would just give an update. If you have no clue what I'm talking about, read the previous blog post and you will be caught up if you care to know! :)

First and foremost, the main feeling I have been processing/battling today has been feeling overwhelmed. We have gone to therapy 3 times, and each time I leave feeling encouraged... and a bit overwhelmed. Don't get me wrong, for the first time in 2 years I feel very confident about our plan moving forward, and to even HAVE a plan is something I am very grateful for. The biggest obstacle against me right now feels like time. I'm nearing the end of my pregnancy, my hormones are just ridiculous, I'm tired naturally, and starting week after next I begin my weekly OB check ups. So that means Monday-Wednesday I will be in some sort of doctor-esk office for the better part of my day. I can't even begin to tell you how thankful I am that the Lord gave me sense to quit my job when He did, and provided for my family because I simply would not be able to get all this done... well, not with my sanity in tact anyways haha. 

If I wasn't pregnant maybe it would all seem a little more  doable and I wouldn't be an emotional basket case... Cognitively Noah is EXACTLY where he should be, and is even advanced in his fine motor skills, BUT he is at least 12mths behind in Speech and today I found out I basically have to re-teach him how to eat all over again. So I have 7ish weeks to get as much done as I can with what ever energy I can muster on a daily basis, before we welcome our sweet baby girl into our mix. I just wish I had more time.... I'm not feeling sorry for myself don't worry, I'm extremely grateful we have resources, support, and a great team now and I have confidence the Lord will carry us through this season. It just seems like a lot today... I so desperately want to be able to give Noah all of my undivided attention so that he can get caught up quickly, but I know that for some reason the Lord has planned it to be this way, so I have to trust that He will continue to find a way for him to keep progressing even after a baby sister is added to the mix. 

Side Note: One question I keep getting is why they can't laser his tongue tie right now. The answer my doctor gave me is that they don't want to put a 2 yr old under anesthesia unless it is absolutely necessary because of their short little necks and potential breathing issues. I don't want to put him under unless it's necessary either, so we're are on the same page with that. Also he would need speech therapy anyways because he is so far behind. We'll wait until he is closer to 3 when they usually do them, and continue to work on his speech/feeding therapy until then. Hopefully if I share our experiences for the next 10 months, it will help someone as well!!

Speech tips so far: basically every time we communicate with Noah we need to make it a challenge for him. Ugh, this is hard for me because even though I'm a parent that firmly believes in a winner and a loser, I hate having to challenge him on EVERYTHING. all. day. long. Whether it's playing, or requesting something,  I now have to let him 'get pretty frustrated' and 'play dumb' even if I know exactly what he wants. NOT FUN. If he can't figure out how to communicate what he wants, then we have to repeat over and over and over how to say exactly what he wants. For example: before he used to just look at something and say 'please,' and I would make him repeat the name of the object then let him have it. Or he would just walk over and point to something. Now we have to add 2-3 words at a time, and then have him repeat the simple sentences a million times until he correctly asks for it. Exhausting and really challenging for him because his lips and tongue just don't want to do it! Remember, I have been working on his alphabet, and vocabulary daily with him since I noticed he wasn't talking like his buddies, so that is nothing new. It's the 'let him get frustrated' part my mommy heart is having a hard time with.. this is also where we have learned that on the flip side of the coin he needs to build confidence. So if he even tries to say 2-3 word sentences that seem some what correct, then he needs praise. So we have been working on this for a week, and just today he (unprompted) could put together "go potty," "ball please," "more please," "roll ball," "I color," and a few more I can't remember. For us, that is a big deal, and I'm super proud of my little man! 18-24 months was an extremely rough time for our family, because he was a very frustrated little guy who desperately wanted to talk but was unable to even say single words... now we are MOVING FORWARD!!! Yippee!!!

Feeding: today was a rough day for me because we finally addressed his feeding issues. Honestly the speech stuff is a hurdle for sure, but I'm confident he can get over it and I haven't been super anxious about it at all. The feeding stuff though is something I was not prepared for. As previously mentioned briefly in the blog from last week, Noah is not supposed to have those adorable little chipmunks cheeks at his age. When I heard this last week I was SHOCKED! 1.) they are so much fun to kiss 2.) they are adorable 3.) I had NO CLUE his cheek muscles were that underdeveloped... ugh. again. I have one praise to report from today, and that is the speech therapist told me Noah was 'blessed to have me as his mommy' because I have found a way to keep his weight up, and food preferences relatively varied inspite of his significant chewing difficulties. I needed to hear that... Let me tell you though, it's a bittersweet compliment, because I feel like I have been banging my head against a wall for the past 1.5 yrs trying to adapt to his chewing limitations (that I didn't know were there). 

One of his biggest problems is that when he eats, he stuffs all his food into those adorable little cheeks of his and leaves it there longer then someone should. No joke, he looks like this most meal times... 
He has been doing this his whole life and apparently it's not normal. It always made me anxious he would choke especially when he was little, so I wouldn't give him huge piles of things at a time. Unfortunately he never grew out of it, so I stopped fighting it. The reason why he does this from what I understand, is that he can't feel that food gets pocketed in his cheeks. Also, he can't get his tongue far enough to the sides to manipulate a piece of food around well inside his mouth. So he just stuffs and stuffs and stuffs until he can feel something, and then by some miracle of God gets it safely down his throat. 

Today's progress: We showed up today right at lunch time, and he didn't get his mid-morning snack so he was HANGRY! She told me to bring his normal lunch, and then also his favorite foods so she could watch him eat. His lunch kit consisted of the following: an almond butter and jelly sandwich on multi-grain bread, cucumber sticks, grapes, a cheese stick, unsalted popcorn, a soft granola bar, and yogurt (he never eats ALL of that, she just instructed me to come with options.) Well he decided he didn't want anything but the popcorn, and cheese stick initially and of course he went to stuffing. She was not so happy with this so she took it all away from him and made him ASK for it, then take everything a bite a time. Holy TORTURE for all of us! I offered him half the granola bar which once he got it in him, he settled down a bit. For the rest of the lunch though he was literally sobbing through having to eat his popcorn one bite at a time. He eventually got used to asking for every bite, and then she made him show her that his mouth was empty before he added anything else. My heart was breaking... it was like feeding a 6mth old, all over again... he responded well to her, but that was not fun, and overwhelming to think we have to do that every single meal until his cheek/tongue muscles finally strengthen. BUT practice we shall, and I'm confident that by the grace of God we will both live through the 3 times a day we have to practice this.

Food rejection: at the end we discussed his recent rejection of foods that he has always loved. She said that is totally normal for a 2 year old, but that Noah probably has less of a tolerance than most toddlers because it's already so hard for him to eat to begin with. So she suggested pairing the foods he loves with other foods in new ways, and see what he does. She put his popcorn in his yogurt, and at first he hated it, but eventually picked it up and ate it after she encouraged him to 'kiss' it and he knew it was a taste he liked. This helps him develop a tolerance for new textures as well since he's never had soggy popcorn before. Also he wasn't interested in his cucumbers at first, but once I put them in the yogurt he licked them a few times, then ate them on their own once he remembered he actually LIKED the way they taste.  I tried that later at home with celery as well which he has been boycotting for  a solid week, and it worked like a charm!! It's a bonus for the kids as well, because apparently they love to dip stuff at this age. 

Overall I definitely feel like he has made progress over the past week, and that is very encouraging to me!!! I really like our therapist, and he does too which is a huge blessing. All in all, things are moving forward, and I can see the light. As previously stated, this isn't a chronic disease process or problem that we can't resolve with a little bit of effort, and I understand fully in the grand scheme of things this isn't that big of a deal. I feel like I have a good perspective on life/death, and what a true health battle is, so I'm confident we will get through this. I just hope by sharing our story that we can help someone out there, or bring a little more awareness to this topic. 

Keep fighting the good fight of trying to raise healthy little angels!!!

Love and Blessings,
The Veggie Momma

Thursday, October 15, 2015

Even Doctors Make Mistakes: Our 2 Yr Struggle

Well I have to say that maternal instincts are certainly a very real thing, and they definitely should be trusted. This blog is about a really long journey that started when Noah was born, and has finally come to sort of a resolution yesterday. If you had any problems breast feeding, problems with feeding your kid, or noticed your child has speech issues than this blog is for you. I was relentless in my search for answers, and after 2 years finally got some. I want to walk through Noah's journey with a problem that started at birth, to hopefully help someone out there who has struggled/is struggling with the same thing.

The beginning: It all started when Noah was born, and the normal 2 week painful nursing window never went away. My sister in law has 4 kids, and was a rock star at nursing. She always told me to hang in there past the first 2 wks, and it will get better. 4 wks went by and I was in so much pain on a daily basis I had to continue to take hydrocodone, in addition to Aleve 2x/day just to get through the day. I called my OB, talked to our pediatrician, and spoke to my co-worker who was a lactation consultant at the hospital, and everyone was out of suggestions. His latch 'looked' good, and there was no KNOWN reason for why he was literally chewing me up, AND why he couldn't gain weight. He started out at 8# 1oz. and dropped to <10th percentile quickly and never got over it for a while. We had a very supportive pediatrician who never suggested formula, but I absolutely knew something was wrong. A sweet friend, trying to encourage me, suggested I pump and give Noah one bottle a day to relieve some of the pain and help promote healing. I cried and cried and cried the first bottle I gave him... The one bottle a day helped, but I never healed so I slowly transitioned from nursing all day to pumping all day then nursing only once a day. I was a slave to the pump, and I felt guilty because a lot of times I had to put him in his swing to pump, and I just had to watch him from across the room. Heart... breaking... My supply barely ever provided for his daily feedings also. 

The first specialist: From the recommendation of a friend I sought out a pediatric dentist to investigate his upper lip. I suspected he had an upper lip tie, which if you have never seen one, his upper frenulum looked a lot like this. His was even tighter, I just can't find a picture, basically it looked like it hooked completely under his gums. 
(picture borrowed from: https://www.breastfeedingmaterials.com/case-studies/infant-retracted-upper-lip-and-maternal-nipple-trauma)

So I get to the pediatric dentist expecting some answers, waited 30 minutes, and he told me my son was totally normal. NORMAL? Really?! I had seen a lactation consultant a million times and nothing was improving in my pain or healing, so I knew something was wrong. What I left with from that visit was that I was not TRYING hard enough to breast feed... AND that I was crazy apparently... not to mention More heart ache... 

My sanity starts to fade: I'm pretty confident I never dealt with postpartum, but I was extremely defeated by all of my nursing problems. I think it was more along the lines of situational depression. I felt like an UTTER FAILURE! All the hopes and dreams I had of nursing my son and the wonderful experience I had hoped it to be, began to fade. As a dietitian I KNEW that breast feeding was the absolute best thing for my son, and I was damned and determined to not give up. I'm stubborn like that... Side note: I never healed until I completely stopped breast feeding altogether, keep that in mind. So pumping HURT, the one time/day I nursed HURT, my heart HURT, and my spirit was crushed... 

Reality sets in: My sweet friend who is a pediatric Nurse Practitioner came to visit with her son who was 2 months YOUNGER than Noah when he was about 14 wks old, and when I looked at them side by side I knew something wasn't right. They were the EXACT same size. Noah was growing extremely slowly, and I tried to act like I didn't notice but I couldn't deny it anymore. It started to sink in that something was wrong... and it felt like all my fault.  He was such a wonderful baby, full of joy, and a great sleeper that I didn't want to accept the truth. BUT the ugly truth was, I was totally failing at breast feeding. I didn't want to see the signs, but they were definitely there. One big sign was that he would cry at the end of a feeding like he was still hungry, but would take a pacifier and calm down. I wasn't necessarily trying to ration the milk I did have, I was just utterly confused because even though he seemed hungry, he had HORRIBLE REFLUX! I tried every reflux solution under the sun and it never got better. So if I GAVE him all that he thought he wanted, he threw most of it up. The reflux will be explained later, but it was NOT due to the fact that he wasn't hungry. He was very hungry actually. My sanity continues to fade... 

The transition to formula: I will never forget the next couple of weeks of trying to hold on to breast feeding, and realizing it was almost over for me. I spilt the only stock pile I had and literally SOBBED.. for a very long time.... After speaking with a friend, she told me that her sister in law was an over producer and had an enormous stock pile, and that she would probably donate some milk to me. At first I was weary of accepting it mainly out of pride, and then I was unbelievably humbled that another woman would be so selfless to give up 'liquid gold' so that I could continue to have a child that held the title of "Exclusively Breastfed."  I realize now that I held on to the title at the end much longer than I should have. This sweet friend graciously gave us at least a couple weeks of milk, and then at 16 weeks I finally gave in and gave him formula. I will never forget her kindness, and generosity to love another mom through a tough season and provide for my baby. I gave Noah Earth's Best Organic Formula (because it made me feel better it was organic for some reason) and he never looked back. 

Formula was a gift from heaven: at the time I resented the formula, I LOATHED the smell, the texture, the look on his face when he would transition from a bottle of breast milk to formula... BUT he was FINALLY growing!!! He was back on his growth curve, he was happy, I stopped pumping as much, and by 6 months old he had completely weaned himself. He still had reflux for reasons we didn't understand at the time, and I had to have him on fast flow nipples or he fussed and fussed, but he was GROWING ya'll!!! He jumped from the 10th percentile in weight and 60th in height, to the 50th in weight and the 90th in height in ONE MONTH! He was back on his original growth curve, and all was FINALLY right in the world... so we thought. 

Fast forward to teeth: When Noah's teeth finally came in, there was a gap SO HUGE in the front that people actually thought he was missing a tooth. I knew he wasn't... I KNEW it was the frenulum. I took him to a pediatric ENT who formally diagnosed the upper lip tie. She said that boys usually tear them on their own eventually, and they don't usually correct them until their adult teeth come in if they need too. So I went to ANOTHER dentist (a different one of course), and she confirmed the same thing... so we moved on with our lives.. again. 

Fast forward to talking: Noah has never hit any of his milestones super early, but he certainly has never been late. I started noticing when he would attempt to talk he could NEVER say things the way his friends could though. He tried... but he just couldn't. I thought maybe it was just another thing the Lord needed to teach me patience on, so when I quit my job I started working with him daily on letters, reading, and such. He got better, but still was not where his friends were, even the younger ones. I spoke to a speech and language therapist at the hospital prior to quitting, and she confirmed that his speech issues could be related to his lip tie. I spoke to a good friend who had a daughter who had a lip AND tongue tie, and ANOTHER friend who is a dentist and finally decided to see ONE MORE SPECIALIST. 

FINALLY the right dentist! At the recommendation of 2 people I got an appointment with only 1 of TWO pediatric dentists in ALL of HOUSTON that specialize in lip ties. I went in without any expectations, but was happily surprised. Within 10 minutes of being there my little guy had been diagnosed with not only a significant upper lip tie, but also a deep rear tongue tie. I sit here barely able to put into words how utterly validated but UNBELIEVABLY FRUSTRATED I was at the same time. My breast feeding had been robbed from me, my sanity stretched, and my heart broken seeing my little guy HUNGRY all that time, and I KNEW in my heart and soul that something had always been wrong...

IMPORTANT NOTE! Apparently lip/tongue ties are fairly normal, but only a small percentage of the population actually have babies that can't nurse from them, AND an even smaller percentage need to have any sort of intervention. The sad part is that significant cases like Noah's end up turning into situations where the mother seeks answers, doesn't get any, and then just ends up formula feeding (Which, thank the Lord for formula, otherwise our babies would have no other options.) Or in my very own instance, I didn't talk until I was THREE and then was in speech therapy until second grade.  One VERY interesting thing I learned was, that apparently mid wives and doctors used to be VERY knowledgeable about ties until formula was pushed in the 50s. Historically babies would DIE, yes DIE if their mother's couldn't nurse. Midwives and doctors were actually so familiar with ties, they could tell as soon as the baby was born if it was lip/tongue tied, and they clipped them immediately. Nowadays, there are only a few specialists who even know that there are more than 1 or 2 different ones. If you suspect your child has a tongue tie, and you live near by I would be happy to connect you with the people I know who can help you. 

The FINAL solution, and fast forward to present day: The dentist wasn't too concerned about his health/teeth in general (he has maintained >50th percentile in weight, and >95th percentile in height ever since we started formula), but still recommended we see someone for further evaluation of his speech. After months of trying to schedule an appointment, yesterday we FINALLY had an appointment with a pediatric speech therapist to see if we could work on his speech (this is their first option before lazering any of ties, which is usually done closer to 3 if they are not nursing any more). SO yesterday we go to a speech and language center in Katy, again expecting very little, and left with more information than I could have imagined. Not only is he definitely suffering from a bit of a significant language issue, but he also presently has feeding problems... STILL!!!!! His tongue can't move properly, and his cheek muscles are under developed therefore he can only chew a certain way.  His chubby cheeks should have thinned out by now, but are still there despite his body thinning out. She was shocked at how well he has adapted, given the significance of his tongue tie. She attributed his reflux/ nursing problems as a baby 100% to the tongue as well. I just sat there in utter disbelief that it had gotten this far... TWO YEARS LATER and I knew something was wrong week 3... 

Validation, frustration, tears, and motivation: between yesterday and today I have felt a myriad of emotions. TRUST ME, in the grand scheme of things... I KNOW this is not that big of a deal to anyone but Jamey and I. He does not have a significant medical issue, and he will be fine... he has managed to thrive, grow, and adapt in-spite of it all. But this has legitimately been a struggle for me personally. I desperately wanted to breast feed and couldn't, he was hungry for much of the beginning of his life, we have had eating issues this entire time that I thought were just related to a million other things... and above all things I had specialist after specialist make me feel like I was CRAZY!!!!!!!! My maternal instincts were there, and it breaks my heart to think that I couldn't have done something sooner. My pregnant hormones got the best of me today and I cried about it out of frustration, and now I'm being proactive about it trying to educate you all in this blog.

The future: I'm almost 32 weeks pregnant but starting Monday we will begin speech therapy twice a week with someone who specializes in eating/speech problems. According to the lady we saw yesterday he will still most likely need the rear tie lazered before he is 3. For right now, I'm grateful we finally got answers, but I'm frustrated they took this long to come. Like I said previously, in the grand scheme this is no big deal... but for all the frustration and tears I have shed over the past couple of years over a problem I knew existed but no one believed me about, this finally feels like validation. 

I pray this has shed some light on a topic very few people are properly educated about, AND that it encourages you to trust that instinct inside of you that tells you if something isn't right with your little one. Also, don't forget to QUESTION medical professionals... it's hard for me to challenge people to do that knowing that I never loved to be questioned, but it needs to happen. Everyone is human, and NO ONE has all the answers. I'll keep the blog updated on how speech therapy goes, and if Noah's food preferences expand once he can finally use his tongue properly...  

In the mean time, keep fighting the good fight of trying to raise healthy little ones!!

Love and blessings, 
The Veggie Momma

Sunday, August 16, 2015

Toddlers, Patience, & Perseverance

WOW, where to begin? Well so very much has changed since my last post, but the two biggest changes are 1.) I'm pregnant with our second munchkin Due Dec. 14th :) 2.) I am no longer working at the hospital.  The second change had a lot to do with the first one, and I'm very happy about the decision. I miss my patients terribly, and I'm definitely going back to work eventually, but for right now this is what is best for our family. I get to help my hubby with his businesses, and juggle preparing for a new baby with a crazy toddler to run after. Speaking of being pregnant with a toddler, WHOA that has been interesting, and exhausting to say the least. I have compromised my standards of nutrition a few times (well a lot of times honestly), and Noah has had fast food more than I am comfortable with, but he is still happy and healthy and that's what matters. Since my last post, luckily he has started communicating better which has been extremely helpful with reducing the frequency of tantrums,  but the STUBBORN 'twos' have now definitely arrived in our home! He turns 2 this week actually, and it seems as some things get easier, of course others get harder. When it comes to his eating habits lately I have learned two very important things that have carried me through this season. 1.) Practice patience 2.) Persevere.... 

Practicing patience a million times a day is probably the hardest part of this stage because my toddler is having to learn what this concept is all day every day, while I'm learning how to be a grace giving mother all day... every... day. Noah really loves to be involved in meal prep, and likes to feed himself these days. Both of which can get VERY messy, but naturally are a part of him learning how to be independent. Of course it would be easier for me to do everything my self, but I know allowing him to be involved will help him continue to develop good eating habits for the rest of his life.

Cooking for example, he loves to help me cook, and he ALWAYS makes a mess, but I try to get him involved in things that are safe and practical for him to do.

Seeing him interested in cooking is worth the mess it makes. Obviously I don't cook every day, even now that I'm home more, however when I'm feeling particularly patient (ha!) I find a way to get him involved. The mess that inevitably ends up all over the kitchen is always a part of the deal, no way getting around it. Even if he doesn't eat everything we made, he at least tries it, and that's a victory for me!

Another area I have to constantly battle practicing patience with is, when he doesn't want to eat something he seemingly has always loved... for example his mixed veggies. He has ALWAYS LOVED THESE!! Since the beginning of his short little life he has loved these... see proof below.

Until last week... he only takes a bite or two at a time and won't touch them again. For an entire week he has snubbed these. Our old tried-and-true favorite has found themselves on his 'reject food' list for the first time. He still isn't interested in them, and I am definitely having to practice patience setting these aside for a little while. In the spirit of perseverance, which is my next topic, I have decided to never give up. So I go to my back up, cucumbers and celery. While cucumbers are anatomically technically a fruit, I still give Noah credit for eating them as a veggie since they are green. Children can easily develop food aversions to all green foods because they associate them with tasting bitter. Cucumbers are my homie, and our friend because they are always sweet, and (at least in my mind) help combat that misconception. This is what our lunches have looked like lately.
That's an almond butter, and strawberry jelly sandwich with his cucumbers and celery. Some days he eats both the green things, some days he doesn't touch either. Sometimes I make 4 differnt things, and he still won't eat any of it. Honestly, this is where the perseverance part has to become a priority. I had found, eventually maybe weeks later, Noah will come around. 

Other areas I have to continue practicing patience with until we have  completely out grown them are: throwing food on the floor, throwing food in general, pouring out cups for fun, walking around the house while eating messy things, dumping containers out, refusing to eat meat, refusing to eat anything healthy at a restaurant, dumping food off of his plate just for fun... FYI, non of these behaviors are 'allowed' in our home, but until we have broken these bad habits (with discipline of course) I. must. be. patient. (you people with hungry dogs get a little bit of a break when it comes to some of these haha). 

Side Note: I have said this a million times, but it's true now more than ever. Noah may not be interested in eating at all, but if Jamey and I sit down (turn the T.V. off) and start eating with out him, usually he decides to join in. Family meals are so very necessary to establish good eating habits. Some weeks we go days without eating a meal where we are all at the same table, but if it's within my control to make it happen, it's always a priority for us on a daily basis. And of course you actually have to be willing to eat the veggies yourself... naturally! 

Another Side Note: One book I read said that eating is a HUGE inconvenience for toddlers as it interferes with their playtime which is the most important thing in their daily lives. Some days I give him a little more time when he's playing until his attention is redirected, then I try a meal. Otherwise if he's deep in play, he is NOT interested in stopping to eat. 

This topic is the most important message from today's blog. I have noticed that teething is usually the culprit for most of his food aversions, but sometimes I wonder if he just gets sick of certain foods? Other days it just feels like he's torturing me haha.

I constantly have to make sure my self worth is not tied up in being able to control this area of his life. I just have to continue to be stead-fast, because personally as mother I feel victorious and worthy (to be honest) when my child will eat something I prepared that is healthy. On the flip side, it can be equally disheartening when they reject every single thing you put in front of them, days. on. END. But refusing to give up on veggies as a whole, is the overall message I'm trying to encourage you to embrace. I can't say it enough that SO many of my patients fell into the  "I've never liked vegetables, even since I was a kid" club. Usually their parents labeled them as 'non veggie-eaters' and it just stuck.

And TRUST ME, I GET IT!!!! There have been so many times over the past couple of months where I have been sick, double exhausted from being preggo, and at my wits end... but I just refuse to give up. I want to implore you with everything I have to keep keepin' on mommas and papas. Like I said before, I have compromised more than I ever thought I would since his sweet baby days of eating everything I put in front of him, but I have not given up, and I encourage you to hang in there too. My expectation used to be veggies at lunch and dinner daily... now I'm happy if it's just one meal a day. On our rough days I'm happy if he just takes a bite or two, or will drink some low sodium V8. The focus is starting new each day, and persevering through the tough times.

Final thought: I will never forget the patients I saw day after day lying in a hospital bed with health related medical conditions that may have been avoided if they took better care of their bodies. You have to remember why this is important, especially during the tough times. You're committed to helping your little ones develop healthy eating habits, because you don't want that to be them laying in any hospital if there is any way you can help it.

Don't forget to give your self grace, practice patience daily, and above all things.... persevere.

Love and Blessings Always, 

The Veggie Momma