How to Breastfeed a Medically Fragile Baby
Milk + Honey’s co-owner, Meghan, has a very unique breastfeeding experience! From breastfeeding a medically fragile baby (who was born with no kidneys!), to exclusively pumping, to feeding through a g-tube, to donor milk, to formula, to a second baby who was nursed exclusively from the breast—EVERYONE can relate to some part of Meghan’s story. Enjoy!!!
Charlotte’s Breastfeeding Journey
When I found out I was pregnant with my first child I was so excited! I immediately knew early on that I wanted to breastfeed. I was the typical first-time mom who was unsure of a lot of things that were happening to my body and I struggled to know what was considered “normal” or if there was really something I should be concerned about. My husband and I both agreed that if we could feed our baby my breastmilk, we would give it our all. As a first-time mom I didn’t know much about breastfeeding. However, I was lucky enough to witness one of my best friends breastfeed her two daughters. She made it seem so easy and her babies were so happy and this is what I wanted for my baby.
Boy oh boy was I in for an education once my little one was born. I feel like to fully understand my breastfeeding journey I need to first start with a bit of background information about my not-so-normal end of pregnancy and my special warrior baby.
At 34 weeks pregnant my midwife was concerned that my fundal height was not increasing like it should have been in late pregnancy. She encouraged me to get an ultrasound to check on baby and the fluid levels around baby just to ensure everything was okay. I had previously declined all options of ultrasounds.
A few days later I went with my friend and doula Maria for my first ever ultrasound. What should have been a special moment of seeing my baby for the first time was anything but. The tech doing the ultrasound was very quiet and what should have been a quick look around turned into us sitting there for over an hour basically in silence. I was not told much by the tech besides there was not a lot of amniotic fluid left around the baby and that made it hard for her to see anything. I left that appointment not knowing what was going on. About 20 minutes later while I was driving home my midwife called me and basically told me “your baby is in danger the fluid level is too low”, and she advised me to immediately drive the 2.5-hour drive to the sister hospital that works along with their birthing center we had been planning to birth with. She told me to be prepared to be induced that very day! She also elaborated on what the ultrasound showed. They were unable to detect a bladder in my baby or any kidneys and that I needed to deliver my baby as soon as possible. I immediately FREAKED OUT. I pulled over the car, cried hysterically, and then in between sobs I called my husband, my mom and my doula (Maria).
After much consideration and research, we decided not to be induced. We instead wanted to learn more about our baby and this unique situation as well as all of our options. The following weeks leading up to the birth were a big blur. We went to a maternal and fetal medicine doctor for another ultrasound and was again told that our baby had no bladder and no kidneys and that she was going to die. I was not ready to accept this diagnosis. A few days later we scheduled an appointment at Children’s National Medical Center to have an MRI in hopes we could get better pictures of baby. We were praying that they were wrong in the previous ultrasounds. Unfortunately, after the MRI I was again told the baby most likely would not survive much longer inside of me and if it did, it would pass away shortly after birth. After pleading with the doctors to give me a real percentage number, they told me there was less than a 5% chance the baby would survive.
At this point we decided to learn the sex of the baby and to pick out a name. We found out we were having a girl and we named her Charlotte Catherine Rice. We decided that we were going to ride out the storm and not intervene with what God had planned for our precious baby. My whole birth plan and notion of having a natural birth and no medical intervention was all quickly thrown out the window. Instead of researching breastfeeding techniques I was instead planning potential funeral arrangements and desperately trying to find stories online of other babies with a similar diagnosis to my Charlotte who had survived past birth. I did not find what I was looking for.
At 40 weeks and 3 days I went into labor and traveled to the hospital dreading my baby’s birth. Something that should have been the happiest moment of my life was the most terrifying. After a very traumatic 3 days of labor, I delivered my little miracle who beat all odds and was born ALIVE and crying. There was not a dry eye in the room. Charlotte was immediately whisked away to the NICU and then 5 short hours later she and my husband were on their way to Children’s National Medical Center to a more specialized NICU. I had further complications in the birth and required 2 blood transfusions so I could not go with them for another day. This is where my breastfeeding journey truly begins.
baby charlotte just an hour after birth
At this point I could hardly sit up in bed without passing out but you better believe I asked for a breast pump because I was going to get whatever colostrum and milk out that I could for my warrior baby to have. In my eyes I figured that if my little baby was going to fight to survive and thrive and beat the odds stacked against her then I needed to do everything in my power to ensure she had mama milk to eat. I pumped every 3 hours. Luckily, I was keeping up with her demand for a while. However, due to her special circumstances I had to monitor her input and output very carefully so that she did not consume more fluid than her little bits of kidney tissue could filter so she could pee it out. It was a constant balancing act. I was never allowed to have her feed from my breast because there was no way to know exactly how much she was consuming. I think I tried once to have her latch and feed from the breast only because it was really something I wanted to experience. Unfortunately, she had no clue what to do and it was just a complete disaster so I just kept pumping.
We also had to fortify my breastmilk to make sure she was getting enough calories but not too much volume because her body could not filter much liquid. Each bottle she drank we needed to first take out the potassium in my breastmilk by mixing in a potassium binder. This binder was mixed into the milk and then sat still on the counter for 30 minutes to settle to the bottom binding to the potassium. We were then able to pour off the potassium free breastmilk from the top and fortify it to increase the calories. It was quite the job!
At 2 weeks old Charlotte had her G tube and a Peritoneal Dialysis catheter surgically placed under the recommendation of her nephrologist. She was going to need dialysis and then eventually a kidney transplant. It was only a matter of time before her little kidneys could no longer filter enough fluid from her body and she would basically start drowning. Her G tube was a life changer for us. It allowed us to feed my pumped, fortified, decanted milk to our warrior and give her what her little body needed to grow. It is typical that babies with end stage renal disease lack energy and show little interest in eating.
By 2 months old Charlotte had gone into respiratory failure and we had to start her dialysis journey. By the time Charlotte was 4 months old she no longer had any interest in her bottle. We always tried to feed Charlotte a bottle first and then would feed her what she was unable to eat by mouth through her G tube. At this point in time, we switched to all G tube feeds.
I was still pumping every 3-4 hours and I continued this routine for 18 months. Unfortunately, I was not able to produce enough milk for my girl as she grew. The only formula that infants with kidney issues can consume did not agree with Charlotte. Breastmilk was essential at this point and I didn't have enough to feed her! You know that saying it takes a Village to raise a child. Well that saying is SOOOO true! I was lucky enough to have 2-3 friends who were nursing their own little ones and they would pump while they were at work. They were kind enough to donate any extra milk they had to Charlotte. I would mix my milk with their milk, fortify it with a special formula and then decant the potassium out every single feed 6 times a day. Charlotte was attached to her feeding pump 6 hours a day for an hour at a time and then again overnight for a solid 9 hours.
sweet charlotte with her feeding backpack. she wore her backpack with her food in it, and the tube would come out of the backpack, and go into her g-tube (and into her stomach). She could crawl around while getting her lunch!
At 18 months I was starting to produce less and less milk each time I pumped and I decided this was a sign that it was time for me to stop. At this point we started to transition Charlotte onto a blenderized food diet which agreed with her stomach much better than anything else we had tried up to this point. Stopping my first exclusive pumping breastfeeding journey was such a relief. No more washing breast pump pieces and mixing and decanting breastmilk all day long. I now had so much more time to just enjoy my baby!
Every breastfeeding Journey is different and I would not change a thing about my first experience. I learned so much and I am proud I was able to provide for my warrior princess as long as I did.
Update:
On April 9, 2019 at 2 years 8 months old Charlottes Daddy gave her the gift of life through donating one of his Kidney’s. Charlotte is now five and a half years old and is doing well. She a spunky, stubborn, lovable and loud, 5 year old and we are so glad we get to enjoy life with this special Kidney Warrior.
Addie’s Breastfeeding Story
I went into this journey with a very open mind after having exclusively pumped for 18 months with my first daughter. My mindset was that this breastfeeding journey couldn’t possibly be any more intense or crazy than my first time around. I was ready to just go with the flow. My goal was to exclusively breastfeed on demand for as long as my little one wanted.
I had a scheduled C section due to some medical complications before my due date and my baby presenting breech. As soon as I was wheeled into the recovery room my husband handed our little baby over to me and I let her latch and suck. Adeline Elizabeth Rice was born July 8, 2020. She immediately knew exactly what she was doing! It came so natural to both of us. I planned to feed her on demand whenever she wanted to eat. I was so happy not to have to pump and deal with the washing of pumping supplies or bottles this time around. She slept in a co sleeper bassinet next to me right from the start and was a great sleeper. She would sleep 6 hour stretches during the night right off the bat. She would only wake up to be changed and fed and then would go right back to sleep. As she got a few months older she discovered real Co sleeping and realized she was able to get milk whenever she wanted it if she was in bed next to me so naturally, she demanded to move into our bed. We continued to co sleep and nurse on demand throughout the day for the next 20 months with little to no problems. On the occasion that I went out of town for the night she was also a champ at drinking from a bottle. I really lucked out with how seamlessly this breastfeeding journey is going.
Addie is now almost 21 months old and will grab a pillow lay down on my lap and ask for “mama milk” when she feels she needs to reconnect. I am more than happy to oblige. At this point in the journey, I plan to continue with letting her nurse when she wants to and letting her decide when she doesn’t want mama milk any more. It helps that she is also a big fan of cow milk, so sometimes she will just ask for milk in a cup and snuggle up with me. I am so grateful I was able to have the breastfeeding journey I always dreamed of.
