Melissa’s Journey

 

psx_20181027_140958.jpgI was passionate about having a breastfeeding relationship with my son, since I’d had issues nursing my daughter several years earlier. In addition to my research and taking a breastfeeding class, I also met with one of the lactation specialists at the hospital prior to giving birth. I delivered Dylan on February 15, 2017 at 3:20 a.m. It was a quick and easy birthing experience, and I was happy that my nurse helped me breastfeed! Although he fell off the breast quite often, I continued to put him back on. Unfortunately, Dylan’s blood sugar was less than 50 and he was jittery. As a result, I was informed that he needed formula at this time. Although I was disappointed, I knew that it was necessary to keep his glucose levels within normal limits. The lactation specialist, who I had met with prior to Dylan’s birth, assisted me with breastfeeding the next morning. Regrettably, Dylan was not passing the hypoglycemic protocol. I was encouraged by the lactation specialist to do skin to skin contact and continue to breastfeed, and I made the decision to supplement formula to prevent my newborn from having to be admitted into the neonatal ICU (which was going to be the result if he did not pass the hypoglycemic protocol).

Eventually, Dylan’s glucose levels normalized, and we were discharged home. I continued to attempt to breastfeed, but our troubles persisted after leaving the hospital. Dylan experienced months of severe fussiness, acid reflux, abdominal discomfort, poor weight gain, inability to sleep (me too!), and a bark-like cough that wouldn’t go away. I knew something had to be wrong with him. Those three months were torture – not only to my son, but to me as well. I remember having two to three doctors’ appointments in one day to various specialists trying to help Dylan. This was very difficult, particularly because I not only had him to care for, but also my three-year-old daughter as well. As a nurse and a mother of two, I was at a complete loss, but knew that I had to keep trying to figure things out for my little boy. His GI symptoms at that point became so severe that he was placed on several medications for acid reflux. In addition, my breastfeeding journey ended at that point as well, as I could not take the pain of his latch and could not keep up with the demands of pumping. Little did I know at the time that all his complications were being caused by undiagnosed and very restrictive lip and tongue ties.

At every turn during this experience, not one of Dylan’s doctors had brought up the possibility of him having lip and tongue ties. It was only through my own persistence and exhaustive online research that I was able to discover what might be the cause of his issues. Eventually, I encountered a Facebook support group for mothers with babies with acid reflux that asked members to answer questions regarding their child’s symptoms. The second question I was required to answer was to check for a lip and tongue on Dylan. This sparked my attention because coincidentally, a couple of days prior, I had taken my three-year-old to her routine dental appointment with our pediatric dentist, and Dylan was with me. During Jasmine’s check-up, the dentist casually asked me if Dylan had a lip or tongue tie. I said he did not, because Dylan’s pediatrician (nor any of his other specialists) had never informed me of this. Following the instructions I found on the mom’s support group, I checked Dylan for the ties myself. To my surprise, it was clear that my baby had very restrictive posterior tongue and lip ties.

At that moment, it all came full circle for me: Dylan was hypoglycemic at birth because his ties caused him to struggle to suck milk out of my breast (limiting the amount of nutrients and calories he needed to sustain a normal glucose level); he was consuming large amounts of air when drinking from a bottle, greatly contributing to his fussiness and GI issues; in addition, he had torticollis as a result from the stiff muscles in his neck and face due to his tongue being tied down. Once it all became clear to me, I called our pediatric dentist’s office as soon as they opened that Saturday morning to schedule an appointment. Unfortunately, the office was not able to fit us in for another week. My next step was to contact another office. Through a lip and tongue-tie support group, I found the name of another pediatric dentist familiar with ties. We consulted with him in person the following day, and he was able to remove Dylan’s ties during that same visit. At no point during this journey had anyone but my daughter’s dentist even brought up the fact that Dylan could have lip and tongue ties. It was clear to me that I was alone in this process and had to navigate my son’s care on my own.

At this stage in the process, I had done so much research regarding lip and tongue ties that I knew Dylan would benefit from both chiropractic and cranial sacral treatments. We started cranial sacral therapy the first day post-operative. Unfortunately, however, the cranial sacral therapist we initially saw was not knowledgeable with lip and tongue releases. I was fortunate enough, however, to find a phenomenal local pediatric chiropractor who was able to help us. After his first 2 sessions, Dylan was able to completely roll over and turn his neck from side to side. Prior to that, he was only able to turn his head to the left. I kept Dylan in therapy for about 6 months. The first two weeks of recovery after his lip and tongue tie release were horrendous. On the third week, it was like having a new baby. A HAPPY baby.

Once Dylan’s complications were resolved and he was finally improving, the trauma of what he and I had been through really hit me all at once. My maternity leave was up a couple days after his surgery, and so I returned back to work feeling like I did not have a real opportunity to bond with my son. He was in agony since birth and I was supposed to figure this out, RIGHT? This was a very difficult time for me emotionally, but with the right treatment and the support of family and friends, today I am doing well.

My experience with Dylan has moved me to help other parents out there who find themselves in a similar predicament. As a result, I have started Help With Ties, a service to assist parents that have babies with lip and/or tongue ties. I want to provide the much needed education, support and advocacy that these parents and babies need and deserve. Help With Ties will navigate them through the at times difficult path of getting their loved one diagnosed and treated. I want to ensure that babies are identified early on as having a tie so they can thrive physically, emotionally and developmentally.

 

 

 

 

 

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