I've been putting off writing this blog post all day. I'm not really sure why but I suspect it's because I've tried not to think about how the last three months really didn't turn out like I thought they would. I remember when Charlie was a newborn I wanted time to stand still. He would sleep on my chest for hours during those first three months. He was the happiest and most predictable baby. I always felt comfortable bringing him anywhere, even the library in the quiet section :) If he was fussy he was hungry and that was it. He could even sit in a dirty diaper for hours with not a peep.
Then Ford came along. From day one he seemed so uncomfortable and I had an overall feeling something was just not right. I couldn't put my finger on it. During our one week check up I told the doctor that he was fussy, seemed uncomfortable after feedings and had bad gas. He was 100 percent breastfed so I knew this wasn't supposed to be the case. The doctor didn't think anything of it and told me if he was even colicky that wouldn't present itself until week two or three. I then said there also seems to be something off about his face. It seems stiff.... The doctor looked at me like I had three heads. As I was leaving the office, he asked me, "Are you OK?" I just couldn't shake the feeling that something was just not right with my baby. When I left, I took ten minutes in the car and just sat thinking .... am I going crazy?
Instead of deciding, YES, I am crazy, I headed right over to the ENT specialist thinking what if he had suffered a trauma to his face during delivery. Ford's arrival was a very intense, but quick delivery. The ENT examined him and determined that everything was fine. So, I took a breath and chalked it up to fourth trimester fussiness. However, I still couldn't shake my gut feeling that something wasn't right and found myself searching on the internet late into the night, still unable to find anything that made sense.
After 4 weeks of countless hours of fussiness, crying and one very uncomfortable baby, I decided enough was enough. Instead of feeling like wanting time to stand still, I was sitting in the living room one day praying time would speed up. I couldn't take it anymore. Seeing Ford in pain and also being around a fussy baby all day was just torture. No cuddles, hardly any smiles or interaction. I felt guilty but when people were around, I would immediately hand him off.
I then decided no matter what, I had to figure this out. When I googled colic, it seemed like "colic" is just not really ever figuring out what is wrong with your baby but having to wait a few months for it to clear up.
I brought him to a GI specialist. You can read that post HERE. She had me cut out dairy and at first I thought it was really working...but it ended up not making much of a difference. I had trouble picking a photo for the GI & Colic post. I wasn't sure what photo to post on instagram. Should I post the picture that summed up my reality? My baby screaming in pain? Was that picture too intense ... too real? I thought in that moment I needed to admit to myself that this is my reality. The night that blog post above went live, something beautiful happened. Mothers from all walks of life commented with their similar stories of living with a fussy baby. Some moms had questions and other shared their personal stories.
And then, a few hours later, I checked my instagram and found this..."He looks like he has a lip tie from this picture. Seeing a specialist would probably be helpful. My son had a lip tie and it caused so many issues, from gas to not getting full. His dad also has one and it created a gap between his teeth."
Oh my goodness! WHAT I thought, is a lip tie? I had never even heard of a lip tie.
More comments flooded in....
Did you check him for a lip tie? ..then another "Have you had him checked for a lip tie by any chance? Looks like he may have one from this pic. I know that can cause fussiness as well." Then another, "Has he been checked for a lip tie? My daughter had one and was miserable acting (tons of screaming) until we had it reversed by laser. It can cause reflux, gas etc."
Ford was asleep and for the first time I anxiously waited for him to wake up. I googled lip ties for hours. I thought there's no way he could have one. He was looked over at the hospital and he's been seen by two specialists and our primary care doctor multiple times. Someone would have obviously checked for it.
The moment he woke up I opened his mouth and OMG!!! THERE'S A LIP TIE!!!
It all made sense. EVERYTHING came crashing together along with a wave of anger and guilt. I knew I would never get that time back with him. And all of these doctors...how could they possibly over look such an obvious thing??
After being up all night, I needed answers. I showed up at my primary care doctor unannounced. It was immediately confirmed. I couldn't see our regular doctor, but another doctor at the practice examined Ford. "Yeah, it looks like he has a lip tie." That was it?? She didn't seem very concerned. Should I see a specialist? The doctor basically shrugged her shoulders and said since he's gaining weight I shouldn't worry. What?? Weight? That's all you care about? What about the fact my baby is in constant pain?
I asked to see a specialist and was sent back to the ENT. That appointment didn't go so well either. "Yes, he has a lip tie and a little tongue tie. He's gaining weight so I wouldn't worry. Are you sure it's not reflux?" NO!!! I said I've been to a GI specialist and it's NOT reflux!! I couldn't believe what I was hearing! "Are you sure?", he pressed. "You should try reflux meds. And these lactation consultants are sending me way too many lip and tongue tied patients. They so over react." I felt like I was taking crazy pills. So many moms said their babies lip and tongue ties caused gas pain, fussiness and colic like symptoms.
My next stop was to an oral surgeon. I couldn't believe I was having the exact same conversation. Since the baby was gaining weight, he advised it might be a good idea to wait a few years. Weight again seemed to be the only concern. He also gave me very incorrect information. He said if he did not stitch the muscle together after the lip tie, it would definitely reattach. He said he would have to put him under in the hospital to perform the procedure. I left that appointment so upset! I immediately called my primary care doctor with whom I couldn't get an apt earlier that week. He said he has seen many babies in his practice who have had great experiences and never needed to be stitched or go under anesthesia. I was given such horrible misinformation.
My husband's co-worker then gave me the name of a specialist, Dr. Siegel, in Huntington that successfully helped his baby. Dr. Siegel is the first and only Oral and Maxillofacial Surgeon in the United States that was awarded a fellowship in the American Academy of Pediatrics. I made an appointment for 2 weeks. My husband walked in that night and found me staring at Ford and basically sobbing. I just wanted to feel a connection and it was so hard for me and him. We decided to call back and basically beg for an appt. They got me one the next day. I walked in and he told me Ford had a stage 4 lip tie (worst level) and a tongue tie. All of the air I was hearing him swallow during breastfeeding was due to the fact that he couldn't properly latch. I had such an aggressive let down that he was gaining weight despite all his challenges. His lip & tongue tie paired with an aggressive let down resulted in one fussy baby.
The doctor then proceeded to swaddle Ford, put little glasses on him and in less than 2 minutes lasered off both ties. Two minutes and it was all over. That was it.
I was supposed to immediately feed him, so I did. I know some babies have trouble latching after the procedure, but not Ford. He fed beautifully and as I put him down to learn how to do the mouth exercises that I would have to do for two weeks to make sure the ties did not come back, he smiled!! I could never put him down ever without him screaming bloody murder. I would have to rock him with the noise maker going full blast just to get a minute. Not this time! He smiled at me with a really long cute smile and all that time that we didn't bond just melted away. So many thoughts ran through my head but the one I remember the most was, "There you are...I knew you were in there somewhere".
It will be two weeks this Thursday, July 19th, and for the last two weeks every 5 hours around the clock I have had to stretch out his upper lip and tongue to make sure the ties don't grow back. Even with stretching out his wounds, he's a much happier baby. The first week he was definitely still fussy, but a different kind of fussy. I could tell it was from the procedure. I never thought I would be able to say this, but this past week Ford has been the easiest baby, just like Charlie. We recently started building a beautiful relationship and it is the best feeling in the world. It's like we are making up for lost time.
I keep thinking what if I never posted that picture, what if I never shared my story, what if those mothers felt it might be too forward to post their intuition, what if I listened during those first few drs appointments, what it I didn't trust my motherly intuition??
Two seconds. Two seconds is the amount of time it would take to check if a baby has a tongue or lip tie. It would take 2 seconds to change the first few months or years of a child's life, of those early bonding days where new mothers are in need of that connection with their babies to get them through the day. Two seconds. Lip and tongue ties go overlooked way too often. I'm not sure if doctors don't take them seriously or don't believe they really cause anything but all it would take is 2 seconds.
After talking to multiple mothers with the same exact story, I know its not just me. Dr. Siegel was a wealth of information. He explained that not only can lip and tongue ties cause so much discomfort for the child during feedings and after feedings, but it can also cause speech issues, dental issues, sleep apnea and even can significantly change the way a child's face develops. We are talking about lifelong issues.
Many times they go undiagnosed until kids are getting braces. One mother told me her daughter had been going to a speech therapist for years and the therapist had overlooked her lip tie. The dentist caught it. They had it lasered, and she stopped speech therapy. One mom had a child that was not talking at two and a half year old. After multiple specialist and no answers they eventually discovered he had a lip tie. After the lip tie revision his vocabulary exploded. Another mother told me her daughter was misdiagnosed with reflux. They had her lip tie reversed and she came off of reflux meds shortly after. Story after story.....
I just hope this reaches as many moms as possible. If you have had a similar story please go back to instagram and share. If you have questions go back to instagram and comment. I feel so grateful for this platform. I want to scream our story from the mountain tops and spread the word. I feel like I need to pass the gift of bonding on to other moms that those three mothers gave to me. Never ever question the strength of a mother's intuition.
A few other things:
-You can see a chiropractor that specializes in working on babies right before & right after the revision. Many mothers told me that body work really helps after this procedure.
-There are occupational therapist that also help babies and children after a tongue or lip tie revision. One of the therapies is called Craniosacral Therapy. This website HERE is a great resource to find an OT near you that specializes in ankyloglossia (tongue tie) & lip tie therapy. There are also a bunch of very useful resources for the parents, you can find them HERE.
-Visiting a lactation consultant is always a good idea.
-You can find the benefits of body work after a revision, HERE.
-We used infant Tylenol to help manage Ford's pain.
-I also put organic coconut oil on my fingers while doing the lip & tongue exercizes every five hours.
-One mom swore by this homeopathic solution she gave her baby. See below.
2 tablets of arnica, 2 tablets of chamomile in one ounce of purified water. ( check with your doctor first) Just mix it up in a dropper and give the baby a drop or two when he/she needs it.
-There are also facebook support groups. Many mothers found these so helpful.