Lip and Tongue Tie

Becoming a parent is hard enough without extra stresses with your baby’s health. You rely on the pediatrician to steer you in the right direction.  It’s rough when you keep doing all you can just to be told it’s not good enough. All you keep thinking is that you are failing at the most important job you’ve ever had.

My son was born via C-section, weighing in at 8 pounds 3 ounces and 21.5 inches long. He was the cutest little chunk ever. I felt defeated that I was unable to birth my son without drugs (back labor is no joke!) and then was told I couldn’t do a vaginal birth because his head was coning and my cervix was swelling. I had to come to terms that my birthing plan was thrown out the window, but I still was set on exclusively nursing. When we got to the recovery room, the nurse tried to get my son to latch ONCE and then said he wasn’t going to be able to nurse without a nipple shield. Fine, I was still nursing but had an extra step to take. During my hospital stay, my son did well nursing and he lost a little over 10% of his birth weight which wasn’t too bad. I was sure a lot had to do with him retaining water from the C-section.

His weight would be a cause for concern for the first 8 months of his life. He had gone from being in the 77th percentile for weight at birth, down to the 19^th at 1 month, 4^th at 3 months, and eventually he would be below 1! I was told to pump and feed him the extra milk after he nursed and I did. He would gain but never enough. I took him to do weighted feeds and he was always getting enough milk from me. He was said to have “slow weight gain” but we couldn’t figure out why.  I would obsess about his weight. I went to a breastfeeding group every Monday to weigh him. Even though he was hitting milestones when he should, I freaked out whenever the number on the scale didn’t move up enough. I was literally at a loss!

A week before he turned 6 months, I began giving him purées. He would nurse ALL DAY LONG and still would get bottles of pumped milk. This kid ate but he was only 14 pounds 7 ounces and still fit in his 0-3 month coming home outfit. We needed to find answers so we went and got bloodwork done. The results came back normal, so we were back at square one.

This next part is important. The following month at his doctor appointment, they weighed him with ALL his clothes on and said he was 15 pounds 5 ounces. I explained how I had just weighed him 2 days before and that was totally off. They didn’t seem to care. I knew he didn’t weigh that much, but they said he looked great and see you at 8 months.  While at breastfeeding group, I noticed that he had lost 5.5 ounces from the previous week. I called his doctor and they told us to come in.

This is the part that makes my blood boil!! They weighed him and said he had lost over a pound since his last visit. I explained to them that I told the nurse they had the wrong weight before and that he had lost 5.5 ounces. Regardless of that, we both agreed something wasn’t right.  I asked if he could possibly have a lip and tongue tie (I knew he had a lip tie since birth because it was very noticeable, but figured since it didn’t hurt to nurse and he transferred milk it was fine).  The pediatrician said with an attitude “No, we check that every time!”  She had told me to start fortifying my breastmilk (adding formula to increase the calories in my milk) and come back in a week. 

I began giving him an extra bottle of milk after he nursed and added butter to his purees to up his calories.  When we went back to the doctor that week, he had gained 4 ounces which was normal for his age.  I explained that I was giving him extra milk and put butter in his food but had not fortified my milk.  She was not happy that I did not follow her instructions.  She told me if he stayed below his curve the next step would be hospitalization and that if I didn’t follow her advice and he doesn’t gain, she would be calling on me for neglect.  I was stunned! How is this doctor accusing me of NEGLECT when I was the one to call about him losing weight?  Now I understand that it is important to follow doctor’s advice and I did, just not in the way she suggested.  I was giving my son extra calories, just not in the way she wanted.  I had also consulted with other professionals to make sure what I was doing was ok.

That day I started to look for another pediatrician for my son.  The following week at breastfeeding group, my lactation consultant looked inside his mouth and realized he did in fact have a lip AND tongue tie.  She was not able to tell me the severity, but gave me the number to one of the best pediatric dentists.  I called and made an appointment right away.

The dentist looked inside Nathan’s mouth and said he was shocked he was as big as he was.  He was almost 15 pounds at this time.  The dentist said that his ties were so bad, he was burning calories while he ate.  This made so much sense because he was hitting milestones and seemed healthy other than being skinny.  We had his ties revised that day.  He was able to nurse right after too!  After that appointment, we stopped at his old pediatrician’s office to talk to the doctor that told me he FOR SURE did not have ties.  The secretary said she was not in (I don’t believe that) but I told her to please let her know I am my son’s advocate and that I was right about him having ties.  My mom called to talk to the owner of the practice and she agreed with me that putting butter in his purees did the same thing as fortifying my milk.  We never went back to that office again.  After that day he started to slowly move his way up his growth chart.

I had to get Nathan’s paperwork for his new pediatrician, while looking it over I found that they labeled him failure to thrive.  They had never said that to me and he was developing fine, just did not gain weight well.  When I talked to his new doctor, he said that looking at his chart he can understand the diagnosis but looking at him he could not.  Nathan is now almost 5 and growing fine.  We are still with his second pediatrician and love the office!

It took me a long time to overcome the trauma of what I went through with Nathan’s weight issues.  I was scared every time I took him to the doctor I would have anxiety.  If I were to be honest, it still affects me.  This came through when I had my daughter, Mikenzie in May 2021.  She was born 8 pounds 1 ounce.  She latched well and nursing came easily this time around, but boy did it hurt!  Every time she latched I lost my breath.  I asked the lactation consultant in the hospital to check her mouth and sure enough she had both ties.  I made the appointment for her revision in my hospital bed.  She lost a good amount of weight and went down to 7 pounds 7 ounces.  Unlike with Nathan, her ties were making nursing hurt.  Every time she latched on I would wince and gasped for breath.

We were able to get her ties revised at 8 days old.  It was quick and I knew it would help.  Even though she got her ties revised early, she still was going down in percentile and fast.  I tried hard not to worry, but after everything that happened with Nathan I couldn’t help it.  At 4 months Mikenzie was in the 2^nd percentile.  The good news was her doctor took into account that Nathan did the same and she was on the same trajectory as him.  We just kept an eye and made sure she kept gaining and didn’t lose. 

Once Mikenzie turned 6 months, she found her love for food.  We decided to do combo feeding and she much rather have the real stuff!  She kept gaining well according to my at home scale.  For once I felt like I did not have to worry about her weight.  At her 9-month appointment, I went into it with no worries!  When she was weighed she was 17 pounds 3 ounces!  She had gained 5 pounds since her 6-month appointment and jumped up to 30^th percentile! 

I write this to say, make sure you follow your instincts.  You know your child best.  Pediatricians are not always knowledgeable about ties and it doesn’t hurt to get a second opinion.  I have helped a few friends figure out their babies had ties and I hope that no one has to go through the trauma I did with Nathan. 

Thankfully both of my babies are growing the way they should, they are happy and healthy!