Baby Name: Este
Amount of Breastmilk: 550 oz
Breastfeeding has been the most difficult yet rewarding task I have ever accomplished. We have been dealt every issue in the book it feels like. Clogs, mastitis, supplementing, tandem, exclusively pumping, using donor milk…and so much more. Seriously if you can think it, I probably experienced it over the past 5.5 years.
My first baby, Bellamy, struggled with breastfeeding initially. He had a nicu stay and multiple ties. I began pumping when he was just hours old, but after a few days he switched to nursing at the breast. He continued nursing with ease, until I got pregnant when he was around 8 months old. At that time, my supply had dropped so much that using donor milk and introducing a bottle was our only option. He did still continue to nurse though, even through labor and birth. My second baby, Sebastian, was born with no troubles and we tandem nursed until my oldest was almost 4, and my second was 2.5 years old. At this time, I was pregnant and had just returned to work. I was happy to have a few months without breastfeeding! It had taken up so much of my life so far. Finally, I gave birth to my third baby, Este, at home. Throughout labor and her birth, we had no issues. Shortly after she was born, she showed signs of low blood sugar so we transferred to the hospital to have her monitored. There, her blood sugars did stay where they needed to be with the help of some donor milk to supplement. I also started pumping at this time. She was having trouble with latching- she had a very weak and shallow latch. Bottles did the same thing, so we decided syringe feeding was our best option until my milk came in and she could fully nurse at the breast. For the first several days, that was what we did. We stayed under close monitor of my trusted IBCLC since day 3. In order to even get out of the hospital, I had to explain that I already had an IBCLC lined up and would follow up with them upon discharge. The hospital wanted to keep us for her weak feeding. Seeing as though I was a very experienced breastfeeder, I trusted my instincts and said I still want to go home and I know what to do from here. After a few days, my milk started to transition from colostrum, and she began nursing more, but was still very lazy and weak. She still needed to be topped off with a syringe after. Finally, my milk came in fully and I began to have my normal forceful let downs. This also meant Este was able to get what she needed even though her suck was weak and her latch was shallow. So this was what we did! It worked until about 3 months when my milk started to regulate more and my letdowns weren’t as forceful. At this time, we noticed she was not gaining weight appropriately. We started intensively seeing our IBCLC who we had been seeing so far since birth. We did frequent visits and weighted feeds, and it started to look like Este wasn’t getting enough. I could still pump several ounces at a time, so we knew it wasn’t a supply issue. We started to try every bottle possible. None of them were takers- she would gag any time one was placed in her mouth, and typically vomit. She also could not put toys, her hands, or anything else into her mouth without gagging and usually vomiting. It was at this time that I brought it up to our pediatrician and said I wanted a referral to feeding therapy and gastroenterology, as I knew this was not typical and this bad of an aversion needed to be addressed. I had a feeling a feeding tube would be our next step. Bellamy (my first child) had one that he had been using for a few years due to oral aversions and other sensory issues related to SPD. We went to feeding therapy, our very very trusted one who we had been seeing with my other children for over 3 years. She also agreed that it wasn’t typical and we may want to look into alternate feeding methods. We saw GI shortly after the feeding evaluation. This was also the same GI who oversees Bellamy, and she knew and trusted our judgement. When we explained everything and she evaluated Este, she agreed that placing a feeding tube would be in Este’s best interest. (This was also the appointment where we were cleared to stop using Bellamy’s tube because he had made such great strides in his eating habits and was nearly fully oral!) it was a very bittersweet appointment. One child coming off of the feeding tube, but another going on. Este was then scheduled for a hospital stay the following week to place an NG tube. At this time, Este and I also contracted RSV which just caused even more aversions and a decrease in my milk supply. We went to the hospital, and they placed the tube. We decided exclusively pumping would be the best option it was not what I wanted for my own selfish (but valid) reasons, but it was what would ultimately have to be done, so my plans changed. I began pumping every two hours around the clock. It was then apparent that I was not making enough to satisfy the 32oz required daily for her feeding tube. We were over two hours from home, away from my frozen milk, and unsure what to do. We knew we needed to supplement. I had stopped on the way to grab a can of organic formula that I would have rather used than what I figured the hospital would supply. At the last minute I decided to try to find donor milk instead, as none of my children had had formula yet, and I had already had experience using donor milk. One of my friends who lived nearby sent me her freezer trash so Este could continue to receive breastmilk! We also had people back home gathering donor milk for us locally so we could have more when we got back home. After about a week or two of constant around the clock pumping, I was finally making 20-25 ounces and we were using less and less donor milk. We still continued to need to use it every day since. After about a month of having the NG tube, Este still was unable to take a bottle. She had caught up on weight, but was still having just as bad of oral aversions. We decided the feeding tube would not be a short term solution like we had hoped for, and opted to surgically place a gtube into her belly. This was what we were used to as it was what Bellamy had. So much easier to use and less invasive in the long run. Her surgery went well and life was a little bit easier without worrying about the NG tube and all the difficulties that came along with it. We continued using donor milk to supplement my pumped milk. This continued for several months while Este still showed little oral improvement. As this point, her hands and some toys could go in her mouth, but pacifiers and bottles still gagged her every time. When Este was 10 months old, I saw a post in a Facebook mom group. Someone was trying to figure out what a certain pacifier was as it was the only one their baby would take. So many comments said the same thing! I figured what the hay, let’s try it if we find one. The next time I went to Walmart, there one was. So I grabbed it. I gave it to Este, and she played with it some, but showed no interest. The next week, I stuck it in her mouth and to my surprise, she started sucking it! And she has every day since. And she is now eating REAL FOOD orally! It has strengthened her oral muscles and reduced her aversion and over sensitive gag reflex in ways I would have never imagined. I really cannot believe the improvement we have seen from one little thing- a pacifier. (For anyone wondering, it’s the Tommee tippee ultra light… and I’m now a believer in it!)
Este is now almost a year old and has shown so much improvement. She still cannot take in fluids on her own and still mostly tastes food. When she does eat, it is in small amounts. Her feeding tube is nowhere near being ready to be taken out, but I am so proud of how far she has come.
About two weeks ago, I weaned from pumping and we have switch to exclusively using donor milk. I did this for mental health reasons- I decided I needed to take medications I wasn’t comfortable breastfeeding on, I’m order to improve my mental health and be a better mom. If this is something you have considered, please let this be your sign that you are no less of a mother for putting your mental health first. For any reason. Donor milk and formula exist for a reason. Please do not let breastfeeding hold you back from weaning and putting yourself first. This decision was one that was so hard on me. I struggled for so long with it, but now I truly think it was one of the best things I could have done for my family. I miss breastfeeding, but it’s okay. My baby is okay. I am okay. I am stronger because of it. We will continue to use donor milk until she’s one and for as long as people are willing to donate to her. I extended fed my other babies, and I won’t stop until we have to with her either 💕
Please also remember that YOU are your baby’s biggest advocate. Never give up until they have everything they need to thrive.