Sunday, October 7, 2012

My Tongue-Tied, Lip-Tied Baby

This story starts at Emerald's birth. At the hospital, she had trouble latching for more than a few minutes at a time. By the end of the 48 hours we stayed there, she was not latching or nursing at all. I asked for a nipple shield because I'd also had to use one for my first daughter.

Emerald nursed literally 24-7 for the first 3 months of her life. She would nurse for 4-6 hours straight, have 5-10 minutes of happy awake play time, then latch on for another 4-6 hours. She did this around the clock, and yet instead of growing she was just getting super skinny.

I thought she was burning too many calories using the nipple shield, so I weaned her off of it and spent about a week teaching her how to nurse without it. Eventually she did, but she would only latch for about 5 minutes on each side, then fuss, then cry, then cry herself to sleep (in my arms of course). She would want to nurse again about half an hour or 45 minutes later. So I nursed her for 10 minutes every 30-45 minutes during the day. She only nursed once or twice at night. After about a month of this she was getting REALLY skinny. Meanwhile I had had to reschedule (several times) then eventually cancel her 1 month and 2 month well check ups due to my husband commuting, us sharing a car, him having inconsistent days off and then eventually we moved to a new town and I had to find her a new doctor.

At 4 months, she finally was seen by a doctor who reported that she was in the 50th percentile for height and only the 5th percentile for weight. She said I needed to get her to nurse longer at a time but only every 2-3 hours. She also referred me to a nutritionist and said they'd call me to schedule an appointment in about a week.

I was not about to wait a week to schedule an appointment and then wait who knows how long for the actual appointment to find out what in the world was wrong with my precious little sweetie. I started researching, asking questions and making phone calls. A mom in my Natural Parenting facebook group asked me if she was lip-tied or tongue-tied. I had no idea what that was, so I googled images of tongue-tied and lip-tied babies and checked Emerald's mouth. She matched the pictures.

These are the best pictures I could get of Emerald's mouth.

Lip-tied babies have a flap of skin that starts at their upper lip and ends in between where their front teeth are suppose to come in. (Click HERE for more images).

Tongue-tied babies have a flap of skin that begins at the bottom of the mouth and ends at the tip (or near the tip) of the tongue. (Click HERE for more images).

According to the 3 lactation consultants I spoke with on the phone, the lip-ties make it hard for babies to latch correctly, since the lips are suppose to fit all the way around the nipple. Tongue-ties make it hard to suck because the tongue is so restricted. So basically my tongue-tied, lip-tied baby could not latch properly or suck hard enough to get enough milk to fill her tiny tummy or to provide the nutrients she needed to grow right. The first lactation consultant I spoke with STRONGLY suggested that I supplement with formula and get her tongue and lip-ties clipped as soon as possible.

So my new feeding routine was: breastfeed as long as she would stay latched. Bottle feed her pumped breast milk and use formula as a last resort. Then pump. I was able to pump about half of what she needed in the bottle. Every 2 1/2 hours (on demand, but this was pretty consistent) She nursed for 5-10 minutes and then drank half formula, half breast milk in a bottle.

Immediately I saw changes. Even though she has always been a happy, laid back baby, ALL fussiness stopped. She gave me extra smiles and extra happy coos and giggles. Within just a couple days, her face started filling out. Her legs and arms felt thicker. On the 4th day, by the end of the day my arms were sore from holding her. This was so encouraging because it meant she was growing faster than my muscles could adapt to the weight. That made me REALLY happy.

Finding someone to clip her lip and tongue tie was ridiculous. I called dentists, pediatric surgeons and ENT (ears, nose and throat) specialists, and I kept calling different hospitals and lactation consultants to get more referrals. Each person I spoke with either didn't do the procedure, didn't do the procedure on babies, or didn't accept my insurance. 47 phone calls later, (this is only a SLIGHT exaggeration) I finally found Lawrence Otolaryngology Associates and made an appointment with an ENT specialist named Dr. Dinsdale  for a consult. He agreed that Emerald was definitely lip-tied and tongue-tied and that this was affecting her ability to breastfeed successfully.

We made an appointment to get the lip and tongue ties clipped the following week. Meanwhile I kept feeding her the breast milk/formula combo, praying my milk didn't dry up, and she kept gaining weight.

The procedure was traumatic for her (and for me) but it lasted less than 5 minutes. They strapped her down and put a cotton swab in her mouth with medicine on it to take the edge off the pain, then gave her a shot under her tongue and under her lip to numb her all the way. They let me hold her while the medicine was kicking in, then strapped her down again and clipped her with scissors. She screamed that desperate, hoarse scream of a terrified baby from the time she was strapped down to when they handed her back to me. She bled a little bit but was in no pain and stopped crying as soon as I cuddled her.

The day of the procedure was rough. She pretty much just slept and cried all day, and had a fever of 101.3-101.7. She refused to nurse and wasn't very interested in formula either.

The second day she nursed for about 20 minutes each feeding, sometimes refusing the bottle afterwards and sometimes drinking 1-2 ounces. The second day I also started massaging the wounds for 30 seconds each, 4 times a day to keep the ties from healing back together. This is to be done for 3 weeks.

The third and fourth day she nursed a little longer, 20-30 minutes and sometimes refused the bottle, sometimes drinking 0.5-1.5 oz of formula. She did not seem to be in pain and the massages seemed only a little uncomfortable for her.

The fifth day she refused the bottle every time I offered it to her. So, less than a week after the procedure my baby is now exclusively breastfed again! Also, she now weighs 12 lbs 14 oz, which brings her up to the 15th percentile for weight. She's still skinny, but we're making progress!

I found a breastfeeding support group called B.I.B.S. to take Emerald to once a week and weigh her to make sure she keeps gaining properly.

At the beginning of the process I found the Tongue Tie Babies Support Group on facebook. This group is full of supportive parents who have tongue-tied and lip-tied babies as well as doctors, dentists and lactation consultants who are very informed. There is also a list of articles full of helpful and informative info.

If you or someone you know has a baby with poor weight gain or latching issues, I encourage you to ask a doctor or lactation consultant to check for a lip-tie or tongue-tie. It is actually a pretty common problem and yet for some reason doctors don't routinely check newborns for this at the hospital, and even though both my daughters had latching troubles no professional has ever suggested I check for this. With my oldest daughter, I had 10 months of stressful nursing struggles before she stopped altogether. I just now found out ( 2 years later) she has a lip-tie. Thankfully my 4 month old now has the chance to have a completely successful breastfeeding experience.

UPDATE: It is now 3 months after Emerald's tongue-tie and lip-tie were clipped and she is back to being a little chub! She is still exclusively breastfed and thriving.

1 comment:

  1. Glad you got this figured out. It is good that you found Dr. Dinsdale. He's a good guy. We used to go to church together at Free Methodist--many, many years ago.