SUCCESS STORY - I have been waiting a year to write those words. The first photo I had my husband take because I thought it would be the last time we nursed. The second photo was taken just before our precious daughter Vivian’s first birthday.

 

After a perfect home birth, she never latched. She had swallowed meconium. After two days, we ended up in the NICU at Phoenix Children’s Hospital for dehydration after she threw up bottled donor milk from a friend (three times). She needed an IV. I was traumatized. My milk came in in the hospital; I was hunched over, unspeakably sore, hadn’t slept for three days straight, and began the cycle of pumping around the clock. Dr. McGreevey was the head doctor at the ER; he was kind and passionately wanted to discover what was wrong. I will never, ever forget his kindness. In God's providence, I ran into him just before Vivian's birthday and was able to thank him along with his wife and two girls.

When my second child, Mark, was born in November 2012, he was 9 lbs., almost 22 inches long and perfect. But, right away, I noticed nursing was painful. I figured that he just didn't have the hang of it yet. In the hospital, I spoke with the lactation consultant on more than one occasion. She was helpful, but generally only reassured me that he would get better and to not give up. By the time we went to his two-week doctor's appointment, I knew something was wrong; nursing was often uncomfortable and my nipple looked flat on the bottom after he finished nursing. I was told he was just a lazy eater and that I needed to work harder at getting him to latch better.

At his two-month appointment, he weighed just over 11 pounds. At four months, only 13 pounds. At six months, he was barely over 14 pounds and was diagnosed as failure to thrive. My baby, who was so chunky when he was born, was in the 0% for weight and 6% for height. He refused a bottle and screamed every single time I tried to nurse him. He would eventually nurse, but he was obviously frustrated, leaving us both in tears by the end. By this time, I had brought up a tongue-tie issue with my pediatrician more than once, only to be told that tongue tie didn't really exist and that I just wasn't producing enough breast milk. The blame was placed squarely on me. She also reminded me that my first child was also small, and Mark was just following the same pattern. “You are only 5’0 tall. And your husband is 5’6. You can’t expect big babies. He may be little, but he is happy and healthy,” she told me. But, he wasn’t happy. Mark cried all the time. Mark was hungry.

When Mark was 6 months old, I found out I was pregnant with my third child. My supply tanked. I drank almond milk. I took fenugreek. I tried pumping more. Things starting going down hill even more no matter how hard I tried to get my supply back up. The more my supply dropped, the more Mark cried. But, on the plus side, Mark was in love with table food. He ate and ate and ate. I starting making a homemade formula that he loved. My baby finally had a solution to being hungry. By 10 months, he was eating full meals at the table and had completely weaned himself from nursing. Even though I know he wasn’t hungry anymore, he still cried all the time. I still didn’t give up on his mouth, because a mom knows. The pediatrician group still just blew me off every time I brought up the issue, and at one year, I finally felt defeated and stopped pressuring my pediatrician to look at his tongue. Since he was finally gaining weight due to eating solids, I figured it wasn’t something I needed to pursue anymore.

When Mark was 15 months old, I gave birth to my third baby. The lactation nurse came to pay a call, and I told her about all the nursing issues I had with Mark. I showed her a picture of him — one where we were all sticking out our tongues. As if on cue, Mark happened to come to the hospital to meet his new sister. The lactation nurse spotted the tongue tie within minutes of meeting Mark and urged me to get it fixed even though he wasn't nursing anymore. She mentioned the picture and had me pull it up again. His tongue was heart-shaped. As soon as I could, I insisted on getting a referral to see an ENT in Montgomery, Alabama. At the pediatrician’s office, I felt like I being placated with the referral.

The ENT was supportive and wonderful, and the first positive experience we had with this situation. For good measure, he also checked Mark's ears only to find he had a hearing problem due to excessive fluid behind his eardrums. He had most likely been born that way, because his eardrums had atrophied and were not working properly. I remember my first thoughts being, ‘Well, I would cry all the time, too.’ Three days before we moved to Louisiana, our 18-month-old Mark had his tongue corrected and tubes put in his ears. We noticed an improvement within a few days. Before the procedure, he could only use one particular type of sippy cup without frustration. By a week’s time, he was drinking out of any sippy cup we put in front of him. He was soon able to even use an open cup. He began babbling more and crying less. Two weeks after his procedure, he said, “Mama” clearly, and I beamed. It was beautiful to hear from him.

He is now 20 months and has 10 to 15 understandable words. He improves every day, but still speaks like a deaf child most of the time. A few days ago, he made the “L” sound which caused everyone in the house to jump for joy. I could see how proud he was of himself, and I hope he knew how I proud of him I was, too.
Recently, we made an appointment with a speech pathologist to have him evaluated for a speech delay and to get him in speech therapy. His improvement is noteworthy and prodigious, but he is still far behind his peers verbally. Retelling his story to the pathologist over the phone had me in tears. I cry because I wish I could have done this sooner. I cry because I wish I had followed my gut and insisted. I cry because I know I did the best I knew how at the time. And I cry because he is amazing.
I am overwhelmed with joy to know he is going to get the help he needs and also that support groups like this exist. I hope his story can prevent at least one child from going through this like my little champ has. Groups like this can make that happen.
So, if anyone is ever on the fence about correcting a posterior tongue tie, especially in an older baby or toddler, remember it isn’t just about nursing. It is about being able to communicate with the marvelous creature that wants so badly to just say, “Mama” and can’t.

What I went through:

• I went through cycles of pumping just so I could heal, and then one wrong latch and back to square one.
• We fed her with a syringe.
• I supplemented on occasion (and I cried each time).
• I had a huge abscess on my areola.
• I was treated for mastitis.
• We were almost treated for thrush.
• Walked around topless as much as I could, because anything touching my nipples was unbearable.

How I felt:

• I remember being glued to my phone for any answers I could find. I would read, read and read blogs, articles, medical advice, pretty much anything I could find. And I did this while I was nursing so I could keep my mind off the pain.
• Every time I had to supplement with formula I felt like an inadequate mother. I know that isn't the truth, but it's how I felt.
• I had a very hard time bonding with my daughter because the thing she wanted most gave me anxiety. I would sometimes cry through an entire feeding.
• I tried hard not to be depressed, but that's how I felt most of the time. I just couldn't see a light at the end of the tunnel.