Thursday, February 27, 2014

Tongue tie and Low Weight Gain: Tatum's Story

Tatum, a healthy toddler who can stick out her tongue!
Today's guest post is about baby Tatum. She was thriving on breastfeeding until a tongue tie lead to a sudden weight loss. This amazing mom continued to breastfeed through a hospitalization and four months with a feeding tube. Tatum is now a happy,  healthy, breastfeeding toddler!

Tatum's Story

I can't believe that it's been one year (and 6 days) since she had her NG tube removed. That horrible, uncomfortable, unsightly tube that provided her little body the extra nutrients it so badly needed for 4 months. For 4 months, Dane and I mixed donated breastmilk with a fortifier for extra calories and used a syringe to fill her belly with the milk that I could not provide for her by nursing alone. 

When she was born, I noticed that her top lip didn't "flange" when she nursed. I was not incredibly familiar with lip ties or tongue ties, but I did recognize that the frenulum of her top lip was tight. At her 9 day checkup, I brought up the lip tie with her pediatrician. Tatum was already back up to within a couple ounces of her birth weight and nursing was not painful, so the doctor said that it wasn't a concern. I didn't think much of it afterwards. I had struggled to breastfeed both Vance and Harper, so I was more than thrilled that breastfeeding was actually "working" this time around! She continued to gain weight and her diaper count was always normal.

That was a busy summer to say the least. Dane was deployed to Afghanistan, so the kiddos and I were living in CA with my sister. In June, the kiddos and I drove back to Illinois to get ready for Dane's homecoming and get Vance ready to start Kindergarten.

Right before Dane was to come back, I started pumping so that I could have a bit of milk set aside in case we were able to have a date-night after his return (wishful thinking... I know! I know!). I was surprised that at 4.5 months postpartum I could still pump a couple ounces AFTER nursing Tate. I knew enough about supply regulation to know that if you don't pump regularly, your supply levels out and it's not terribly common to not be able to respond to the pump at all. I was able to get about 30oz saved over a couple week period and froze it in anticipation of Dane's return.

He came home at the end of September and it was amazing. The kiddos were so happy to see him again and Tatum found comfort in his arms from the get-go. It was like she had known him all her life. I weighed her on the home scale right around the time he got home and she was 12lbs 4oz. My chunky little 4 month old was exclusively breastfed and I couldn't have been happier.

About a month later, I noticed that her cloth diapers were fitting looser. I weighed her and she had lost about 12 ounces! I was shocked! I called and made an appointment with her pediatrician here in IL on Tuesday. At the appointment, I expressed my concern about the lip tie. Her doctor was attentive to my concern and put in a referal to the ENT doctor affiliated with Milwaukee Children's Hospital. We were seen by ENT that Thursday. The ENT confirmed that Tatum had a significant lip tie and she also suspected a posterior tongue tie. She recomended getting them both clipped and because of Tatum's age and severity of the ties, she would need general anesthesia. I signed the consent forms and the surgery was scheduled for the folowing Monday, October 29, 2012.

The surgery was quick and Tatum was a trooper! Because of the amount of tissue that had to be clipped on her top lip, she had 2 stitches. When she came out of surgery, I tried to nurse her, but between the swelling and stitches, she couldn't get a good latch. We tried to get her to take a bottle with a little pedalite in it, but she did NOT want that! After realizing she couldn't latch, she nuzzled in against my chest and rested. She was released after a couple hours in recovery.

Over the next few days, she began to nurse more. Her lip flanged and it sounded like she was able to take nice, deep gulps of milk. Unfortunately, what she couldn't tell me, was that my milk supply had taken a dive over the last month. That, coupled with her weakened oral muscles, meant that she was not getting close to the minimum amount of milk she needed for her body to maintain, let alone grow and thrive. 2 weeks after her surgery, I noticed that she still looked very thin. I weighed her and was horrified to see that in the past 2 weeks she had lost a FULL POUND! I called her pediatrician that morning and took her in that afternoon. After an assessment, she called Milwaukee Children's Hospital and got Tatum a room. She was pre-admitted and we drove up there that night.
Late September everything is well, 6 weeks later she needs to be hospitalized.
Two days of tests showed nothing wrong genetically or metabolically  no parasites, no bacterial or viral infections. During that time, we began doing pre and post feed weights. It was then that it was discovered that she was getting less than an ounce each time she nursed, sometimes much less. I asked why she wouldn't be wanting to nurse even more. If she was starving and needed more, wouldn't she want to be latched all day long? I had always nursed on demand. I NEVER put limits on the time or frequency of her nursing sessions. It was explained that her body had gone into an anorexic state. She no longer had the drive to nurse more often.

I began pumping around the clock to increase my supply and took every supplement you could think of. When they tested the calorie content of the milk I was making, it was much higher than expected. Baby formula contains 20 calories per ounce and human milk averages about the same depending on the needs of the baby nursing. My milk was averaging 26-28 calories per ounce. I was trying to compensate for the lack of volume, but it still wasn't enough. To supplement we tried several bottles, a supplemental nursing system, and finger feeding, but she refused them all. The team of doctors and I realized that the last thing she needed was an aversion to eating, so it was decided to place an NG tube. All supplementation would be done through that.

Because it had been weeks since her stomach had more than an ounce or so of milk, supplementation had to be done slowly at first. In spite of the limited amount of nutrition she was getting, her sugar levels and liver function were within normal ranges. They feared that if they all of a sudden gave her 4ounces, her body would go into shock. We worked her up one ounce every 2 days (per feeding) until she was getting 3 ounces total per feeding. We did pre and post nursing weights to calculate how much she needed through the NG tube. After being admitted a week, she was released. The plan was to continue supplementing through the day (for 5 of her on demand feedings) and allow her to nurse on demand through the night.

Over the next several weeks she became stronger and more enthusiastic about nursing. Most mornings she was able to get her full 3 ounces (or more!) directly at the breast. My supply was on the upswing and she was tolerating supplementation well. Because ounce for ounce solid food provides fewer calories, we didn't start offering solids regularly until around Christmas time. She enjoyed dinnertime very much! We would give her a little of whatever we were eating and add a little extra organic butter or coconut oil to hers.

Tatum is going to become a big sister this Spring. I do not fear birth. I adore being pregnant. I am excited for the new baby smell. I am terrified of dealing with another lip and/or tongue tie. I am lucky that we have a pediatrician that understands the importance of getting any issue resolved as soon as possible. This was an experience that I wouldn't wish on any parent. 
This was the lip tie. The picture was taken on 10/24/2012, a few days before it was clipped.

This was the lip tie. The picture was taken on 10/24/2012, a few days before it was clipped.

I took this a couple weeks ago. The little nub on her upper lip is the scar from the surgery. That nub was attached to her gums down where her front teeth come in, hence the gap.
I took this a couple weeks ago. The little nub on her upper lip is the scar from the surgery. That nub was attached to her gums down where her front teeth come in, hence the gap.

Tongue Tie Resources:

Posterior Tongue Tie Information

Diagnosing Tongue-Tie in a Breastfed Baby: Tight frenulum can cause painful breastfeeding and poor weight gain

Dr. Kotlow Articles on lip/tongue tie 

Self Help for tongue tie and latch (photos and descriptions which may help you find tongue tie yourself, plus tips on improving latch)

Breastfeeding with an upper labial tie (lip tie)

Trouble Breastfeeding? Look in your baby's mouth. (Overcoming lip and tongue tie with an older baby)

To share with a reluctant provider: The American Academy of Pediatrics' newsletter on tongue tie and breastfeeding

The Myths About Painful Breastfeeding