Dhanya mother to Ahaan
My son, Baby A, was born two weeks early (37+6). After having a high-risk pregnancy with gestational diabetes from the first trimester, proteinuria, a VSD for the baby (later resolved), and the baby passing meconium in the womb while in labor, I was relieved to hold him safe and healthy. I was very much looking forward to breastfeeding my baby for a few reasons, firstly,since I had GD and was on insulin, I wanted to make sure his blood sugars were good, and secondly, I had a fairly difficult breastfeeding journey with my daughter. I took two different breastfeeding classes and watched tons of latching videos, feeling prepped, and I was looking forward to having a pleasant experience this time. I was able to latch my son within the first 2 hours of his birth. He latched and fed for almost 30 minutes. His latch looked perfect, his lips were flanged out, and I had no pain at all. I was so relieved and was so excited. I still insisted on meeting with lactation to ensure everything was
good after having gone through a difficult breastfeeding journey the first time. The second night at the hospital he was up feeding all night, he had enough wet diapers, and by the time we were discharged, the nurses were all saying what a great eater he is. Although I was a little bothered that his suck was very weak, I was assured by the lactation and nurses that everything was fine.
We came home and was feeding him on demand. I was concerned that I was not feeling any tugging, pain, or anything at all when he fed. My daughter's latch was strong, like really strong, and nursing was always painful. So, I was wondering if this is how it is supposed to be.
We had his follow up at the pediatrician’s office when he was 4 days old. Since our regular pediatrician was out of office for a few months, we met with a new doctor, who said he had not gained any weight but primarily attributed it to being a lazy eater or his personality. In the following days, Feeding started getting more difficult. He was becoming more fussy and would unlatch and cry often. The next day, he woke up around 5 am and tried to feed him, but he would unlatch and cry. When I tried to latch him again, he would unlatch and cry. I felt so helpless and was crying. We could not understand what was going on. We called the pediatrician’s office and asked for an appointment the next day.
We kept trying to feed him; my 5 day-old baby and I were trying together. I did everything I could in the meanwhile, skin to skin, different holds for feeding, breast massage, and breast compression, but nothing helped. I cried and cried and was feeling so lost. At around 2 pm, he slept off after being tired of crying. I asked my husband to get some formula, and in the meantime t I got my old pump out and started to pump to see if my supply was good, which it was.
That was the start of a difficult feeding journey. That week we had several appointments with different specialists. A nurse practitioner who was also IBCLC at the pediatrician and office diagnosed him with reflux and prescribed him medication. She did not address my concerns about his weak suck; she assured me everything looked good. But we held off starting medication, as we felt that was not the issue. Looking for answers, we met with hospital lactation the next day and an SLP ,following up twice a week , trying different holds and doing weighted feeds. Between appointments, weeks flew by. I saw a few different lactation consultants, both online and in person. We were told he has a tongue tie and got a referral list of providers who can release it, from the hospital lactation team. We went back and forth about the release, but between bottle feeding, painful pumping, and a baby who was having difficulty sleeping, we decided to go for the dentist consult. When we were at the dentist, we saw a 1-year-old who was there for a release, and it was so tough watching a toddler who was kicking and screaming for just being there. We realized if our baby need a release, it was better to do it right away rather than wait. So we went ahead and did it.We were told that within 2 weeks he would feed well. We were given options to see a massage therapist or a chiro for body work. We went with the massage therapist, but that did not help us. The therapist we saw unfortunately did not seem like she knew a lot about feeding and tongue ties.
We had the two week follow up with the dentist with still no improvement in feeding. The dentist said, “9 out of 10 babies see improvement in feeding and there might be 1 baby whom we don’t know what the heck is going on”. I was not expecting that from a provider I trusted who promised better feeding within 2 weeks, before the procedure. I left the dentist with an immense feeling of guilt. Guilty of putting my baby through a medical procedure, guilty of not asking as many questions, guilty for not doing enough research, guilty for wanting to breastfeed, guilty for doing the stretches and exercises after release on my tiny baby, guilty for not being able to bond with the baby. I met with the lactation who sent us for the release later that week; they did not have anything more to offer and told me that they don't know if there was anything else we could do and that I may not be able to breastfeed at all. Things started spiraling inside my head; why did I put my baby through a medical procedure if I could not breastfeed? I spent days and night on internet to find a solution. I felt detached from both my kids, I was asking the most unreasonable questions to my husband and my mom who was visiting us. I fell down an internet rabbit hole, I started seeing a lot of conflicting information online. I was reading stories after stories on the mom groups, tongue tie groups, face book pages, breastfeeding groups and everywhere. Finally, I found a Facebook comment which mentioned a pediatric OT and I clicked the link and found that the OT was within an hour from where we lived. As a last resort, I requested for an appointment. The following week we met with our new OT, Michelle. While we drove there, I did not have much hope since all the providers we met within the past 8 weeks were promising results, only to say they don’t know what was going on when they saw no progress. However, after the first meeting with Michelle, we drove home feeling we were in good hands, someone who knew what they were doing. She gave us exercises for the baby and promptly addressed his weak suck and oral strength issues. Finally, someone who listened. It was such a relief. We had a follow-up the week after. In the meanwhile, I was still on the internet, and my already depressed mind was getting even more depressed. I was still questioning my decision to go for a tongue tie release. I felt like I was the worst mom in the world. Then, things really escalated as I was diagnosed with PPD.
The next week we followed up with Michelle. Although there was not much of an improvement in feeding yet, there was a lot more clarity on things. She worked on getting his oral strength stronger and body stiffness. She explained why she was doing what she was doing and how will that help. I felt comfortable handing over my baby to her. She was so gentle and ensured the baby was comfortable throughout the sessions. Michelle was so kind that she listened to all the things which I had to say and answered all the questions I had. She even responded to questions I texted between follow ups. That made me feel better. We followed up with the exercises, and a few weeks later, we saw a lot of improvements in baby A. I finally felt confident in a provider on that long journey.
Since I had PPD, every failed feeding was a trigger for me. I dreaded even trying to breastfeed. Michelle worked with us to find a lactation consultant to help us with latching and getting the baby to breastfeed. One thing that really changed my mind and helped me get back was when Michelle asked me to think of all the prep work we do as prep work for running a marathon. While exercise, nutrition etc are needed for marathon prep, practicing running makes the difference. So while therapy and all we were doing were required, what can actually help more is trying to latch him more often. That perspective helped me push through my mental health challenges when I tried breastfeeding. Things really started to change since then. The next meeting with Michelle we did a weighted feed, and lo and behold, for the first time in 3 months we saw some transfer at the breast. It was not perfect, but it was something. We continued working with exercise at home and therapy in the office with Michelle and did weighted feeds with the lactation consultant, seeing him transfer more at the breast. Within the next few weeks, not only we saw baby getting stronger, but we were able to finally switch to exclusively breastfeeding and stop supplementing with bottle.
Baby A started gaining weight better than when he was bottle fed. From around 4th percentile at his 2 month check-up, he jumped to 32nd percentile by his 4 month check up. His oral strength improved, he started holding his pacifier better, he learned to feed better, he has learned to manage the flow better, and we both now enjoy the feeding experience.
Being able to breastfeed again changed a whole lot for me. It helped my PPD. I was sleeping in a different room from the baby for the first 3 months, and finally, I was able to go back to room sharing with my baby without having triggered and having to go through guilt.
I am so thankful to that one person who shared the link for OT on a facebook group. I was so close to giving up before I decided to try Life Fun Therapy. I am so thankful to Michelle for all her knowledge and support. I hope professionals and providers become more aware of how OT can be a huge help and the importance of therapy before concluding that tongue tie release is the only answer. Also, I wish the lactation professionals get more training in this area and understand the importance of therapy before and after release, so they can give better guidance to moms. Going for occupational therapy was the best decision we made, it made everything we did until then worth it.
Incredibly thankful to Michelle for her expertise, for her guidance, and support, for being a caring provider. I wish all the new moms and babies had access to providers like her.
