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.

 

 

 

 

 

10 thoughts on “Melissa’s Journey

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  1. Wow!!!! Your story has touched me in many ways from the disappointment of not being able to breast feed to the endless research and mom groups. I had no idea we have a similar experience! I still have her to have my daughter checked for lip tie and after reading your story I will!!

    Liked by 1 person

    1. Alisha,
      Thank you for your support. You are not alone. There are many parents that find themselves in similar situations. Please check out my “Links” page. I think you would find those articles interesting. Please feel free to contact Help With Ties for a free consultation. We would be happy to assist you and your loved one in getting the help you both DESERVE!

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  2. Love, love, love everything about your site!!!! It can help a lot of people!
    My son had this problem when he was a baby… I wish somebody could help me then like you doing it right now.

    Liked by 1 person

  3. Thank you for sharing your story. Although I have not had first hand experience with this condition, after reading about your experience I realized how little I knew about it. I will definitely share this site in the hope that it will help people to recognize ties and quickly obtain knowledgeable help. Thank you Melissa!

    Liked by 1 person

    1. Hi Joanne!
      Thank you for supporting Help With Ties. Many do not know about ties, even our trusted pediatricians and specialists. This is another reason Help With Ties was founded. We want to identify ties earlier on so that infants have the chance to thrive developmentally, emotionally, and physically.

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    1. Thank you for your kind words! Your right, it was a scary and frustrating situation. Help With Ties was founded to prevent this from occurring as often as it does. Please keep us in mind for any parents and babies that find themselves in similar situations.

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  4. What an amazing journey for you. Your passion for investigating what was happening, rather than just sitting back took great courage and strength during a very stressful time in your life. I am forever grateful for your help with my niece, Madeline, as she was struggling with breastfeeding. My dear sweet sister passed away a couple of years ago; I wanted to and attempted to be there for Madeline as much as I could; but I wasn’t prepared for this the way her Mommy would have been; nor did I even know where to begin. It was so hard hearing my niece voice her concerns and emotions regarding the matter. On a call to you to just check in and say hi to a friend-devine intervention took place. I had completely forgotten about your journey and when I brought up the topic of my niece, you not only reminded me of your history with Dylan; but you took the lead and literally within a matter of a couple of hours after you speaking with my niece, you had contacted several lactation and other specialist in her area and provided her a safe place to talk about her concerns. I cannot thank you enough for what you did. Allowing her to just talk to another mother that had experienced what she was going through. When I called her later that day, I could tell a huge difference in her voice as she had been given the blessing of having someone on her side that had a similar journey of her own and that knew who to contact.
    I am still blown away at how quickly you were able to take care of my niece that lives outside of the state of Florida. We are forever grateful for your quick response and for the time that you took to talk to her and allow her to not feel so alone. Thank you, thank you, thank you. I hope that others will take the time to allow you to help them. Your journey is now a passion and you will be able to help many. You truly have turned a mess into a message, xoxo. Simply amazing.

    Liked by 1 person

    1. First and foremost, thank you for this lovely comment. Help With Ties was founded to help mothers and babies, like Madeline and Tucker. Although they do not reside in South Florida, Help With Ties would never turn a mother and baby away that needed assistance. We take pride in assisting families in an efficient manner. We were so happy to help this mother and baby dyad. I am happy Madeline and baby Tucker are doing well!
      Again, thank you for allowing us to help your loved ones!

      Like

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