By Badass Grace
Hi! My name is Grace, I’m a 29 year old home birthing, breastfeeding, baby wearing momma to 4 beautiful little girls ranging from 10 months-13 years. Before my youngest, I’d always exclusively breastfed, even as I gave birth to my oldest when I was only 16. However, it’s the journey with our youngest has by far been the most challenging and was the biggest fight of my life.
I gave birth to Rebekah on December 14, we had a perfect, uncomplicated home birth. She weighed in at 8lbs. 10oz. and she was PERFECT! By 2 weeks old, I expressed concern to our pediatrician that I thought she had a posterior tongue tie. The doctor said that her frenulum didn’t extend and that the baby was just fine, just probably a tad uncoordinated. She finally hit her birth weight again at 3 weeks old (usually by 2 weeks at the latest) but our doctor still wasn’t concerned. At 4 weeks, we lost some weight, she was down 2 oz. the doc was finally noticing that stuff seemed a bit off; she wanted us to weigh in at 5 weeks. Our weight was only up an ounce or 2 and she wanted me to supplement. I was very frustrated, I didn’t want to do that, I wanted the help that I’d originally sought with the breastfeeding.
I tried the bottle but she wouldn’t take it. I’d had it!!! I wasn’t getting the help from our pediatrician so I called around to find someone that was trained in tongue ties. I came across a local ear nose and throat doctor that would take her. He said that while she had a mild tongue tie, it shouldn’t be interfering with nursing. The only other person that I could think of was a nurse that helped me with my oldest 12 years earlier. I tried to reach her through the hospital but to no avail, finally I turned to Facebook, asking for people to help me get in contact with her. Within 2 hours, this woman was returning my phone call. She gave me a few tips to try until she came on shift a couple of days later. I tried the suggestions and they didn’t work. I went to see her when she worked, and FINALLY, after 6 long weeks, I had someone that truly listened to me. She was the first person to ask to see how Rebekah did with a bottle, between that, and seeing the problems that we were having while nursing, she said that we had a dysfunctional suck and no tongue tread. The nurse called a doctor that is in the same practice where we normally went, and she had us seen that same afternoon. This doc clipped Bekah’s anterior tongue tie, and immediately she had a somewhat stronger latch!!! Over the 3 days that our dear nurse was on shift, we gained SEVEN ounces!!!! I couldn’t believe it! I stopped trying to supplement, she never took more than 2 ounces of formula per day while I was attempting.
The following week, we lost 5 ounces. I was devastated. I decided to pick up the supplementing again, and keep on trying. I was spending my entire day trying to get her to eat. Nursing sessions would take over an hour to get her to nurse for even 10 minutes, and it was awful. She’d scream, cry, and thrash around, it was heart breaking! At 8 weeks, I called our nurse again, she was my only ally. This time, she was worried. She told me that something wasn’t right. She wanted us to travel to Albuquerque (3 hours from home) to the children’s hospital to have a swallow study. She called our original pediatrician to discuss the issues. The doc gave her attitude, accused me of not supplementing as suggested, and said that I wasn’t doing my part. ARGH!!! The nurse persisted and got us an appointment and stressed that she wanted the doc to see the baby take the bottle. That afternoon, the doc sent us to Albuquerque. I don’t know if she finally saw stuff wasn’t right or if she just sent us to shut me up. While in Albuquerque for that week, Rebekah was seen by lactation, speech, OT, many docs, nurses, and everyone in between. As normal, her weight fluctuated, she gained one day and lost for a couple days. No one knew what her deal was, we tried a million different things, and finally on day 5, the ENT’s saw her and FINALLY clipped her POSTERIOR TONGUE TIE! That’s what I thought our issue was from the beginning!!! UGH! She could finally latch, maintain her latch, I didn’t have to hold the “c” hold on my breast to keep her on, she was calm, and she ate normally for the first time ever! 2 days after, we were gaining, and I was ready to be home to my husband and older daughters! We came home and I was confident that we were healthy. We were discharged on her 2 month birthday.
We came home and I swapped doctors. I went with the one that clipped her tongue the first time. I couldn’t stand that our first Ped, who I’d seen for 8 years previously with my other girls, had blown me off so much. We gained 6 oz. the first week, then 2 oz., then 1 oz. the 3rd week home. Even though we were gaining, we were falling on the growth charts. She was fighting to eat, fussy, stressed, seemed colicky, and had a rash from head to toe following her 2 month shots. Our new doc was concerned. She decided she wanted more testing done. We were being readmitted.
This time, I was a bit better prepared emotionally. It was stressful being away from my husband and older daughters! Rebekah and I made the 3 hour trek back to Albuquerque and she was admitted on Sunday, March 9. My tiny baby girl was being tested for Cystic Fibrosis, the intensive swallow study, they did genetics, blood work, checked for malabsorption, even checked with cardiology, and a million other things. Thank God everything tested normally. I couldn’t understand it. No diagnosis, but more weight loss, and just a fussy, screaming, stressed baby and momma so far from home, and all alone. The doc said that if Bekah didn’t start to improve she would need to place an NG (the feeding tube that goes in the nose). I cried at the suggestion. I didn’t want it. I just wanted my baby girl to be fine. After the doctor left, and I had time to think, I realized that it might be a huge help, if we could relieve some of the stress and pressure from FORCING Rebekah to eat, she might calm down! When the doc made rounds the next morning, I told her I wanted it. I wanted to see what it would do, nothing else had worked and I was desperate to help her, however it meant. While our doctor wasn’t thrilled, she had it placed. She felt that I was sort of jumping the gun, and she later apologized saying I made the right call. But once we took the pressure and stress off of her, she did GREAT! She gained weight! And if she stressed, I didn’t have to force her to eat, we just tube fed her pumped breast milk! I was thrilled! My baby was doing so much better! But the hospital policy wasn’t to send children home with an NG. That meant we either had to stop using it, or move to G-tube. She was nursing sooooo much better! We had a surgical consult on Tuesday, and they set our appointment for the following day at noon (Mar. 19). I was truly going to have a long term tubie. It still seems surreal. She came out of surgery well, and we had a rough first night, and tough day as they slowly increased her feeds. She was hungry! We finally started gaining, really gaining! And MAINTAINING! Rebekah was discharged that Sunday, March 23, and we haven’t looked back since.
After removing the stress and the panic, my girl will even comfort nurse now!!! It was simply an oral aversion after taking so long to fix that damned tongue tie. I am so thankful that my baby girl is doing well. You’d hardly know we had a rough start. She is now meeting and exceeding her developmental milestones. This ornery little lady is giving me a run for my money! She started slow, but now that she’s going, we’re set. She has been crawling since 6 months old, pulls up on everything, stands on her own, and nurses and eats table food like a champ! We’ve now gone 3 months without using the feeding tube at all! At the earliest, we’ll get the tube pulled in the spring, once cold and flu season passes.
Rebekah started by going for weekly weigh-ins, the biweekly, then monthly, and as of Monday, at her 10 month weigh in, my baby girl was placed back on a TYPICAL check-up schedule!!!! She doesn’t have to go in until her birthday!!! I left that appointment in tears! We’ve worked our butts off for this! She’s perfect, just the way she is, now weighing in at a whopping 16lbs 10oz!!! She’s tall and skinny, just like her sisters! <3 I praise God every day for the progress that Rebekah has made, and that I was able to advocate for my tiny girl that something truly wasn’t right. Through all of this, I’ve finally figured out what I want to do for a living: I have wanted to get my doula certification for a long time, but I’ve realized that I need to specialize in the postpartum period and particularly with the breastfeeding relationship. It’s where my passion is. People ask me when I’m going to stop nursing her, and I tell them that we will nurse as long as she wants to. We fought for what we have, and I’m not putting a time limit on any of it.