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.

2 months and 2 days - going strong

We’ve been home TWO MONTHS! Emilia has doubled in size. She is 11lbs. She is wearing 3–6-month-old clothing now! Half of her 3-month stuff doesn’t fit at all. She’s above average in height, weight, and length for a preemie her actual age AND for a babies born on October 19th (her due date). We are so proud. One of my favorite things is when she nestles her little chubby cheek into my neck when I am carrying her around.

She’s off oxygen support; only had to be on it for 10 days after we got home. Plus, one night I might have overreacted to some rapid breathing and lower than normal stats, and we took her to the ER. Turns out preemie babies with breathing issues go straight back into a room, so we didn’t have to wait in the waiting area with the sick children. Children’s is less than 10 minutes from the house and has valet.

We still monitor her oxygen saturation level at night, so we’ll have an alarm to wake us up if anything happens…like she pushes so hard to poop that she throws up and chokes on it. I didn’t need an alarm to wake me up for that, I already had her sitting up and leaning forward before it could go off. She didn’t even wake up until I sat her up and started patting her back, and then just side eyed me like what in the world mom. This baby sleeps HARD. She sleeps in a bedside bassinet – which I would highly recommend to anyone with a baby. I can just reach over and hold her little hand without her being in the bed in harm’s way.

Our doctor appointments have slowed down because she is progressing so well. The eye doctor is the most frequented and it’s currently every 2-3 weeks. A month after the anti-vegF injections she had in Lubbock (that worked to straighten out the ends of her blood vessels in her eyes), the blood vessels began to grow out more! They are still in zone 2 but we were thrilled by this news and pray that they will hit zone 3. We go back December 21st. That is all I want for Christmas. Emilia’s eye blood vessels to hit zone 3. Zone 2 is your peripheral vision, and most people don’t even use Zone 3 according to our retina surgeon. All doctors say she won’t know the difference, she might just turn her head more. We would bring her every other week forever but eventually she will get too strong to just be swaddled while they put the metal torture device into her eye and pry it open to look behind it. And that is when decisions will have to be made…they can’t put her under every 3 weeks. We can’t leave the blood vessels not fully grown out because they could start to curl and negatively affect her eyesight she already has, so they will have to laser them. And that will be it. They won’t grow past that. So we need them growing strong now, please God and Santa.

All her blonde hair fell out and she has a full head of fuzz that’s her momma’s color. Her eyes seem to be getting lighter blue. They have a starburst of light near the iris. We are thinking the blue might stick. If you don’t know, babies’ eyes change color until they are about 6 months on average. Unless they are born with brown eyes, then they usually just stay brown. She tracks things and people, namely people. And just calmly watches what’s going on around her. Sometimes I wake up and she’s laying there with her eyes open, not crying, just looking around. Figuring out the world.

She had another inguinal hernia! But this time it resolved itself. Whew. No surgery needed.

Angelica went back to work before we left Lubbock and our first month home, we passed her back and forth during the workday but now we have a pretty solid routine now, and a nanny that comes from 8am-2pm. She is gentle and loves her. Our pediatrician is thrilled with her developments and says she has great head control. I’m so glad our mommy and baby sit ups and planks/tummy time are paying off 

Angelica is doing amazing and looks amazing! She is a boss mom. She works hard and loves gently. Emilia is very lucky to have a momma that learns all about pooping and congestion massages because they are working!

I wasn’t sure if anyone would want updates once we got home but have had a good number mention it so figured I’d put this here for anyone keeping up with her progress and that wants to help me pray for those blood vessels in her beautiful blue eyes to keep growing to zone 3 or even better all the way out and then we don’t have to have laser! Not trying to be greedy though, so zone 3 would be great (all the way would be phenomenal).

Oh and the dogs just love her. Stella gives her kisses when she can and sits guard at her nursery door during her nighttime routine, both wake up if she’s crying. Fin sits with me when I’m feeding her or reading her a story, he lays and watches when we’re playing or doing tummy time, he comes with to get bottles in the night.

We are still staying clear of folks out in the wild as much as possible. Emilia will owe everyone a sip and see rain check until about May when RSV season is over. We’ve only let family with all their shots hold her so she can be soooooo safe. The last thing we want is her back in the hospital. So hopefully we’ll catch you guys in person in the spring. Until then, let me know if you’d like an update here.

Testing, 1,2,3...

This morning started with learning how to use all of the oxygen equipment we'll be taking home. I took videos and notes. The pulse oximeter they gave us reads slightly off from the hospital one...giving me immediate trust issues.

Okay, I suppose the morning really started with me running late to this appointment because I couldn't figure out how to open up the Doona and eventually ended up carrying it down the long hospital hallway to the NICU, just showing off the unused wheels, lol

After signing off on everything that I would and wouldn't do with the equipment and promising to have a fire extinguisher and fire alarms in the home (they are coming to do a home check!), I meet the certified car seat put-er in-er. I believe there is a more official title and she does way more lofty things than this but nonetheless, this is an important task and I appreciate the help. She guides me through making sure the base is level and isn't phased as I hunch over to stand on it in the backseat so I can pull it SUPER tight. Then I sign off on some more papers that this has happened.

Back inside, Emilia is getting her eyes dilated for yet another eye exam. I am not sure I've eaten enough for this, actually come to think of it, I haven't eaten at all, I better not look. We get her situated on the table and I face away with my arm stretched back behind me to rub her little leg and tell her it will be over soon. I spin around and scoop her up as soon as he tells me he's done. She stops screaming and pouts. Emilia, I am so very sorry. REPORT: Her eyes look like before anything was wrong, he is very happy everything has worked so quickly...and he'll be back Wednesday, gut wrenching.

Now it's time for her Board Meeting. This happens every Monday. All of her physicians get in a room and we talk about Emilia. This Monday we discuss the new doctors she will see in Dallas. Everyone here is taking care of finding her great care and setting her first appointments. How very nice. We have to send them our CPR certification. No one is just handing over babies over here!

I got some work done while Helly did the bath. Always fun because her hair looks blonde again after bath time. Right now it's kind of brown on the top and blonde on the sides and back. Like business in the front and party blonde in the back.

Tonight we are watching Emilia as she sits in the car seat for 2 hours. It's called the car seat challenge. She has to keep her oxygen saturation above 90 and not have any bradys the entire time. It took both of us and the nurse to rig her tiny self into the car seat but she doesn't seem to mind it too much. We have Bach's Cello Suites playing for her and she is thoroughly enjoying it. She has 4 more minutes and is 20 minutes past her 11pm feed so she is HUNGRY but not mad, she rarely gets mad.

We are doing a stay in Tuesday and Wednesday evening. We have to manage her and her oxygen on our own before we are released into the wild. To think, some people just have babies and go home! Tomorrow will mark 12 weeks since Emilia was born. Thursday, once we've passed all the tests, we can GO HOME!!