Failure to Thrive

We've been struggling getting Emilia to eat since Christmas. We all had COVID and at first the pediatrician thought it might have been hard to swallow while stuffy and she had a bad experience so we tried new rooms and places to feed her in. We went back for another weight check, no progress. Then she guessed that milk tasted different because of the medicine Angelica had to take for COVID. COVID eventually destroyed Angelica's milk supply. I asked for a donor breastmilk prescription as she had lost weight and was told it was expensive (don't care) and hard to get (don't care)...and we were given some formulas to try instead. She threw them up, we ordered others, more vomit and painful burps that sometimes led to vomit and/or screams. This went on for a month. I weighed her every Sunday and watched it stagnate. We took her in for weight checks and watched her fall from the 86th percentile in weight to the 40th percentile. We were told to give her reflux medicine, I said, are you going to give us a prescription - our pediatrician said we can just get it over the counter and use half a tablet...how????

For a week we tried different methods of this, we put the dissolvable kind in milk but it is flavored, she gagged and vomited. Tried a different brand. I got the capsule and broke it open to count half the tiny capsules inside, they just stuck to the side of the bottle to big to go through the nipple. I placed them directly on her tongue. She cried and gagged. I crushed a tablet and tried to grind it into powder to put in a syringe with a tiny bit of milk - she spit it out. We went back to the doctor. Still no prescription given. She fell farther on the scale of growth, hitting a plateau in her on curve. It's been nearly two month, we get a referral to a GI doctor. They can't see us for 25 days. Worried of what will become of our happy healthy baby that is now a fussy hangry baby, we call around for help. Our pulmonologist sends in a prescription for reflux medicine in a liquid form with a tiny baby syringe - that she does NOT throw up. Thank heavens. We still have trouble getting her to eat after a few days, it should take 3 days to 2 weeks to fully take effect. She continues dropping on the weigh scale. We make an appt with the Director of GI at Children's. It's 21 days out. We call the pediatrician again very concerned; asking again for a prescription for breastmilk as she stopped gaining weight when she moved to formulas. We call around for new pediatricians. Someone has got to help our baby. Every doctor at Children's is not taking new patients. We start asking friends for referrals and researching doctors. We chat with a nurse director that tells us we can apply for the milk without a prescription. We call and mid-way through the conversation learn that our pediatrician has called the bank ahead of us to tell them we DON'T need it and she doesn't think it will help. The door is closed.

We continued waking up every two hours at night to dream feed her (not waking her up to eat) she would take it half of the time but that was the only way to get her to consume more than 4 ounces a day.

We get into a tele-visit with a pediatric GI doctor. She listens and tells us Emilia has developed a food aversion and that breast milk can absolutely help and she will write us a prescription right then, but that it will be hard because the bank still has to approve you and the other doctor had already called them.

We went to Facebook and met up with kind strangers to get milk samples to later purchase. Trusting in humanity that they were actually good. Emilia wouldn't drink them.

Finally a friend referred us to a NICU nurse that has her own practice and a milk bank. We went Friday for our appointment to find that Emilia is now lower than the 1st percentile for her adjusted age. She is what is medically called failure to thrive. She kindly gave us a bag of frozen breastmilk and suggested we go to Children's to be admitted and get a feeding tube until we figure out the cause.

We packed a bag and took her immediately. She was so dehydrated from only eating 12 ounces on average a day when she should be having 24-30 they had a really hard time finding a vein. She got an IV and fluids, and more fluids, and more fluids with electrolytes.

Today a speech therapist came and watched Emilia (not) feed. Here's what the current theory is...apparently babies lose their auto-reflex sucking at 3-4 months and then learn to suck. During this time, Emilia had Covid and didn't want to eat then Helly's breast milk changed flavor due to COVID meds and she refused it, then it dried up and we tried different formulas she didn't like. During this time instead of learning to suck, she learned she didn't like to drink. And when we got bigger nipples for the bottles bc we thought she was agitated about not getting enough milk. This caused the milk to flow when she wasn't sucking and choke her which then lead to vomiting and she then associated eating with pain. And that's why she will eat when asleep and not vomit. So she has to learn how to suck. This is hard to teach. There is a bottle to help teach this but sometimes it’s not at all effective and babies have to have a feeding tube until 6 months when they can eat solids. At the first feed she refused it. 2 hours later after a traumatic series of events…she was sad and starving and sucked and drank 3oz which is great and will hopefully happen again.

They put the feeding tube in this afternoon. She is not consuming enough calories orally and this can be very dangerous. So she will be fed enough calories to grow and she we will work on her learning to suck and enjoy eating. We have to break her mindset that eating is bad. The tube is the only way to get her enough calories. But the breastmilk seems to taste good as she hasn't smacked her lips like she liked something in a loooooong time so we are very hopeful.

The iv in her tiny hand stopped working so they had to try the other hand. The nurse blew the vein after 10 minutes of digging around while Emilia screamed and cried and looked at us like why aren't you helping me. Her cries are louder now than when she was in the NICU, they pierce your heart and wrench your gut into a knot that feels like is going to come up out of your throat. Tears soak her cheeks. Watching her in scared pain is pure torture. Failure to thrive feels like a failure in parenting. There was too much scar tissue in our little baby's 8 month old vein...They put warmers on her feet and got the iv in her foot. She is on IV fluids with electrolytes.

After screaming with no rescue during the IV, then screaming while we had to help hold her down for the feeding tube placement. I fear she'll never trust us to protect her again. I pick her up as soon as they are done and she quits crying and just stares at us. I feel like we've let her down and my heart is breaking she has to endure all of this.

Typical procedure is for them to release us after 3 days of weight gain. Today she weighs less than yesterday when we checked in. I say current theory because she will be getting more test to make sure nothing is going on with her anatomy to cause an issue or discomfort.

As always, please pray for our miracle baby to have a miraculous turn-around.