Update on Alex

I got a video of one of Alex's pain episodes, a very mild one, but it was enough that at Alex's six month well visit the doc confirmed that what we were seeing was reflux pain. Here's the video:

What you're seeing is a very mild Sandifer's episode. The pain in his esophagus makes him want to stretch his throat out. Alex will generally sleep through these episodes and wakes up a happy boy in the morning. I will say that him sleeping through these episodes is the only saving grace. It makes it a lot easier to deal with his pain as it seems he doesn't remember it in the morning.

Lately his episodes have gotten worse. He's arching a lot more in them and is crying out. I spoke with the nurse today as we were worried he was having night terrors. That was her first guess as well. The doc however believes it to be his GERD. We're upping his meds tonight to see if that can stop his pain episodes.

Another issue we discussed was that the side of Alex's head was kinda flat. It wasn't too obvious and we had tried everything we could think of short of flipping his head with a spatula in his sleep. (Family joke, kinda.) The doc tested his range of motion and found that he was a little resistant. This is called Torticollis and is rather common among babies in general, but very common among babies with GERD. This article gives a great explanation of torticollis and the relationship to GERD.

Alex started physical therapy the week after his well visit. The therapist said his case was very mild but there was enough of a difference in his head diagonals (measurements of the skull diagonally across the head to form an X) that he would benefit from some stretching and PT. Alex hates the stretches, but in just a week she noticed a great difference in how his neck moved.

Even with all of this going on, Alex is a bright and happy little boy who recently fell in love with blueberries and zucchini. He may have a few extra appointments and we might be on a first name basis with our pharmacist (I also taught his kids in Sunday School), but he is none the wiser. He's snuggled in his swing napping right now. He had a little episode a few minutes ago, but it didn't even phase him.

Alex after enjoying his blueberries!

If your little one has infant reflux/GERD, I feel ya. It's more than just a laundry problem for a lot of families. Feel free to share your experience below!

A Mother's Day Wish

Some of you may recall when I wrote about Alex's feeding issues I mentioned that he struggled to keep his food down. Others of you have watched my Facebook posts about Alex's reflux. They diagnosed Alex with infant acid reflux at his two month well baby visit and upgraded it to GERD in March.

If you're not familiar, here's some info on infant reflux and GERD. (Alex has ten of the GERD symptoms listed.)

We started doing all the "behavioral" treatments, thickened feeds, keeping upright after meals, no time flat on his back, loose clothes, etc, around his first birthday. We tried the special "reflux" version of Enfamil at his 2 month check, it didn't do any good. (Just a side note: the Enfamil AR is slightly pink in color. If it doesn't stop your baby's reflux, you will have slightly pink stains on everything. You've been warned.) Then, Alex got started on Zantac. Yep, they make baby Zantac, it's even mint flavored.

The Zantac worked for a little while. About two weeks before Alex's four month visit his reflux symptoms started slowly coming back. By his well check, they were getting pretty strong again. The doctor increased his dose and said that would take care of it. Another week or two go by and I start questioning if I remembered to give Alex his meds. By the way he was acting and how much he was puking, I could have been squirting rain water in his mouth.

I call the doc and they switch him to Prevacid. It really seems to help, but after about two weeks he still seems grumpy to me. The doc assures me that he's fine. (He also says that I have too much empathy, but that's a different post.) I tell myself that the meds might just need a little longer. That was the end of March.

Around mid-April, Alex starts whining in his sleep again. He doesn't wake up, but he whines and arches his back. My first thought is that it's his reflux acting up again. Philip calms me down. We don't know that it's reflux yet. It could be teething or bad dreams. We agree to just keep an eye on him. By the end of the month he's more fussy, his still arching his back in his sleep, he's spitting more (and occasionally puking), he's fussing at his food and some of his spit-up is yellow. Now we know. This is reflux.

It was time to renew Alex's prescription. His six month visit is only a week and half away so we don't really feel we need another appointment just yet. When we call in the script we ask for an increased dose. They doubled the dose and we are to report back at the well baby visit. And that brings you to now.

Alex has only been on the increased dose for two days so there's no way to tell yet if it's going to work. He doesn't seem to be spitting as much, but he's still showing some signs of pain. If I could have anything in the world for Mother's Day, I'd want him to healthy. I'd want him to take a nap and sleep peacefully. I'd want him to play on the floor without his tummy hurting or rolling into a pool of his own spit-up. Maybe, by Sunday he'll be feeling better.

Alex made this at daycare for Mother's Day. :)

Do you have a GERD or reflux baby? How do you cope with their pain?

Scariest Moment of My Life

Around noon on Valentine's Day I got a call from daycare that Alex had a fever of 100.0 and needed to be picked up. He had had a cough for awhile, but hadn't been congested in several days. Still, we go to the doctor. The doctor said that he had Bronchiolitis and probably had RSV seems how we both had some cold symptoms. We did a breathing treatment in the office and the doc sent us home with our own little nebulizer and Alburol script so that we could treat him at home. She seemed confident that he would be better and able to return to daycare on Monday.

This is Roscoe Frog, Alex's nebulizer.
All the cool kids have one. ;)

Things go well Thursday and most of Friday. His breathing was rather labored but the treatments seemed to help. Friday I was getting us ready to go pick up Philip from the airport (he had been in California for business) and before doing Alex's breathing treatment I did a respiration count. He took 58 breaths in one minute and 61 the next. I called the on call doc and she said to do his treatment and if it helps, just keep an eye him, if it doesn't, he'll have to go to the hospital.

I already had his treatment set up so I sat down with him and we go started. He hated it. This loud machine was blowing stuff in his face and this big green thing (the mask) was always in front of him. He squirmed and kicked and fought. The nurse had said that they just more medicine that way because they take more breaths. Well, as he's kicking and screaming and coughing, his eyes started to roll back. I immediately called my mom (she used to be a peds nurse) who told me to take him straight to the emergency room.

I already had the diaper bag next to the car seat for us to leave. I grabbed my keys and as I started to put Alex into his car seat, he turned grey. (My heart is pounding as I type this.) I rubbed on his little chest and his color came back. He started screaming at me again (lately he has hated getting into his car seat). I grabbed the diaper bag and ran out to the car. Later I realized that I hadn't locked the door.

I broke every possible traffic law on the way to the hospital and bottomed out coming over a few hills (no damage to the car). Alex was crying. A few blocks from the hospital he went silent. No cries. No wimpers. No little Alex jabber. I don't know that I ever prayed so hard that a baby would cry.

When I got to the hospital (probably less than three minutes from when I called my mom), I went to get Alex out and he was as white as a ghost. I rubbed his chest and he woke up looking pretty startled and out of it. I ran him into the ER and handed him over the counter to the nurse as I told her that he had Bronchiolitis and had turned grey. She took him straight back.

A few minutes later they let me back to his exam room. I texted a friend to go pick up Philip from the airport. Once they had assessed Alex and saw that he okay, they had me sit on the guerny and hold him. They tested him for RSV and it came back positive. They did a breathing treatment and X-ray in the ER. Philip got there just before they put in Alex's IV and sent us up to Pediatrics.

The doctor and the nurse think that Alex had so much thick mucus in his lungs that when he was coughing during the breathing treatment a piece go lodged in his airway. He was admitted and we spent Friday through Tuesday at Hendricks.

He had two types of breathing treatments every 4 hours: a saline solution to help break up the mucus and the Alburol to help open up his lungs. The respiratory nurses also did chest precussions to help loosen it all up. They did eventually start an IV to keep him hydrated so that he didn't have to eat as his stats seemed to dip while he drank.

He's doing much better now. He's still wheezing and sometimes breathing heavy, but that could continue for up to a month. He's likely to develop asthma now and we've been warned that he could wheeze with any respiratory illness in the next year.

Through it all, he only acted "sick" for about a day. He's been a little extra fussy the last few days but he's also drooling like a hounddog so I think he's getting some teeth in. He's such a strong little guy and I am so blessed to be his mommy.

Alex playing with his yellow block in the hospital.
He still used his IV hand to play so I had to give him toys he didn't have to grasp.

One Stressful Week

Saturday:
Alex and I were out running errands. He had been napping pretty soundly for awhile and had slept through a feeding. He had been pretty hungry the week before so I figure he's having a growth spurt and that's what made him so sleepy. We're at Drug Emporium when he wakes up. I change him and fix him a bottle. I feed him while looking at some of the baby/toddler foods they had available, after all it won't be too much longer before he starts solids. He eats most of his bottle and then throws up, big time. He's covered, his carseat and stroller are covered; it's gross. I change him and wipe up his seat as best I can. He still had about an ounce or so left in the bottle so after a few minutes, I offer that to him. He pukes again. Well, I only had one set of clothes with me so we high tail it out of the store and back home to get him cleaned up.

Sunday:
We stayed home from church. Philip had a migraine and with the vomiting the day before, I'm thinking Alex's reflux meds aren't working and I don't really want to have him spew at church. Later that day he throws up again. Again there are two spews close together. I make a plan to call the doc in the morning so we can discuss his reflux meds. My mom recommends giving him a tiny bit of rice cereal and mashed banana to help soak up the extra stomach acid. He enjoys his first tastes of real food, but his tongue thrust reflex is still pretty strong so he only gets a few bites. Alex sleeps a full eight hours plus some that night.

Monday:
I have the day off for MLK Jr. Day but Philip has to work. Alex has a large, loose bowel movement in the morning. He eats about half his bottle, then vomits and falls back to sleep. I call the doctor's office and leave a message for the nurse. When Alex wakes up again he has mucusy, bloody diarrhea. He eats a half bottle then falls back asleep. I call again and the receptionist says there's no appointments until the following morning so I leave another message for the nurse and call my mom. She thinks its serious. I debate on taking Alex to the walk-in clinic near the apartments. I want him to be seen but don't want to expose him to the flu which will be in all those waiting rooms. I send mom a picture of his bloody stool and she calls back and says to take Alex to the doctor or the emergency room. I text Philip that he needs to come home now and call the doctor's office again. I tell them I will be taking my infant to the emergency room if they cannot see him that day. He has an appointment at 1:30.

I pack a simple diaper bag thinking we'll only be gone a few hours and go to the doctor, bloody diaper in tow. They weigh Alex when we get there. He's 11 pounds, 14 ounces! We see Dr. L who confirms that it was blood in his stool. That stool combined with him sleeping through feeds has her worried. She gives us orders for him to be admitted to the hospital for tests and to make sure he stays hydrated. The office is on the hospital campus so it's a quick drive to the main hospital. Philip drops us off at Admissions and goes back to the office to wrap up the project he was working on. I fill out the admissions papers and we wait for his room to be ready.

Once we get the room, the nurses start his vitals and the tests that Dr. L ordered. He's a full two feet tall! He hated the infant pulse-ox and blood pressure cuff. They take him blood, but not from his heel like I was used to, they take it from his arm and both nurses have to hold him down to do it. This was worst part of all the tests. He screamed and screamed. When he caught my eye, he just stared at me and cried his lungs out. I held his little hand and stroked his hair and they were done not nearly soon enough. I held him for a little while and then we were off to get his ultrasound done. The tech tells me that the scan looks normal but they will have to wait for the doctor to give the all clear.



On the way back to the room (themed after the Berenstain Bears Go On Vacation) the nurse tells me that he's positive for Rotavirus so we have to be very careful to wash our hands, especially after any diaper changes. The nurse doesn't know if that's the problem though. He can't eat until the doctor gives the all clear on the ultrasound so the nurse gives me some sugar water to make his paci sweet and help keep him happy. A little while later she brings in some Pedialyte and says the doc gave him the okay to try to eat as his ultrasound was clear and he wasn't going to be needing surgery.

He drinks some of the Pedialyte but obviously isn't happy with it. I think he only drank it because he'd gulp it so fast before he could taste it. When Dr. L comes by for rounds she says he can have formula again. He loves that idea! He eats a whole bunch and sleeps pretty well that night. When they weighed him he had lost a little weight, but the nurse assures me that it wasn't much (they weighed him in kilograms so it was hard for me to tell as I was never very good with the metric system).

Resting after a long day

Tuesday:
In the morning, Dr. Su. checks on him. She says that if he keeps his food down he might be able to go home that night. She assures me that his weight loss was minimal and was the difference of having eaten or peed recently. All his tests had come back except his bacteria cultures which could take 24-48 hours and the only positive so far was the Rotavirus, but she couldn't say if it was from the vaccine he got a week ago or if he caught a wild strain. He does really well that day and is on full formula feedings by about midday. He spits up quite a bit a couple of times, but it's not enough to be clearly vomit. He does still have very liquid stools during the day. Dr. Sh. sees him that evening. He's not quite comfortable letting him go home yet, especially since the bacteria cultures aren't back and he wants to rule out Salmonella and E. Coli both of which can cause bloody stools.  He suggests Alex get Similac Sensitive formula as it's made for those with lactose sensitivity and having diarrhea can lead to temporary lactose intolerance. We switch his formula and he does well that night.

Wednesday:
Dr. L sees Alex in the morning. His bacteria cultures came back negative. He's free to go home. He can even return to daycare after a day of no diarrhea or vomiting. Because he got sick so soon after getting his first Rotavirus vaccine (it was just a week prior to symptoms) there's no way to tell if he got it from the vaccine or if he just caught it. He won't be getting the second dose of the Rotavirus vaccine. He got the virus so he has the antibodies now. She'll note this incident in his chart for when he goes to school. We go home and I bleach all his diapers and sanitize everything in sight. That night we try going back to his regular formula and he throws up again. We call the doctor. Dr. Su is on call and says to put him back on Pedialyte and try formula again later. She says that if we want, she will readmit him, otherwise we can just bring him in in the morning. He does well with the Pedialyte but shows a few symptoms of dehydration so I decide that I will make sure he takes at least two ounces every two hours. He also develops a bit of a cough during this time. It doesn't sound like his regular reflux cough. He also has a low grade fever.

Thursday:
Alex still has some very loose stools. Some of them look a little red. I'm pretty sure it's just the dyes from the Pedialyte but I bring a diaper with us to the doctor just in case. Dr. Su sees him that afternoon.  She says that he looks good and he's okay to stay at home as long as he doesn't do any more backsliding. She also says that he could have diarrhea for a week and that would be okay. She takes a listen to his chest. It appears he picked up a cold at the hospital. We don't have any vomiting or bowel movements that night but he does spit up a bit when we try a thickened feed.

Friday (today):
We had healthy stool today! It was a bit dark and pasty, but definitely not diarrhea! He's still had a slight fever and a bit of a cold. He seems to be teething too. He's done really well. He's spitting up a bit, but I think that's because we haven't been thickening his feeds. He's happy and eating great.

This has been the most stressful week ever. I hated being at the hospital but it was better safe than sorry.  I'm so relieved that he's feeling better and that it wasn't something more serious. I just pray he's never in the hospital again (unless he decides to become a surgeon).

How I'm Teaching My Son To Sleep

The issue of sleep "training" came up recently through an article I found on Facebook. It got me thinking. There seem to be two schools of thought when it comes to infant sleep: let the baby cry it out or respond to every little sound. I would like to present a different perspective based on our experience with our son.

Some background information. Alex is just over two months old. He is formula fed as he didn't gain weight when exclusively breastfed. Alex had been showing some pretty bad reflux symptoms the last month or so. Alex goes to bed around 10 pm each night. He currently sleeps in his swing to keep him upright. (He spits up if he lays flat on his back.) Alex sleeps about 5-6 hours at a time pretty regularly which has him getting up at around 3-4 am for a change and a feeding, then back to sleep for about another 1-2 hours. He's starting to get where he will sleep until I wake him around 6am, therefore getting about 8 hours of sleep.

We started trying to find a good bedtime routine for Alex almost immediately after birth. Babies learn from routine what they can expect. Our routine is still in flux, but Alex gets a bath every other night (every third night right now as we're waiting on a rash to heal). After bathtime Alex gets his nighttime diaper on and gets dressed and swaddled. We then sit on the couch for his last bottle. We try to make this bottle a bit more on the warm side. After he finishes the bottle, he's usually starting to look sleepy and so we put him in his swing (was crib). If he is particularly alert we will dim the lights and keep it quiet for a little while and rock him. This is usually enough for the sleepies to step in.

This helps Alex get to sleep, but what most parents struggle with is the baby staying asleep. Here comes the tricky part. While I was pregnant I read Bringing Up Bebe which tells various stories of French parenting techniques. Part of the book talks about sleep and about how French parents will pause when a sleeping baby cries to see if they will keep crying or if they will go back to sleep. They don't wait long, maybe just a second or two to see if that little cry means that baby is waking or if baby will go back to slumber.

Here's the science behind this wisdom: a baby's brain is learning how to sleep. Just as babies learn to suck and swallow, breathe, and hold their heads, babies have to learn to sleep. When the baby reaches the end of their sleep cycle, they might wake up ever so slightly. At this time, they might let out a quick cry or two. If they are just cycling their sleep, the baby then goes back to peaceful slumber without a problem. If there is something the baby needs, they will continue to cry to let you know. You can tell the difference within 2-3 seconds.

Now, we've told parents, particularly nervous new moms, that they mustn't delay in responding to their baby's cries or their baby will turn into some emotionally stunted psycho. (That's an exaggeration but the message is the same: let your baby cry at all and it will damage them emotionally.) This leads to parents who rush to the bassinet at the sound of the slightest whimper ready to change a diaper and offer the bottle or breast so they can soothe their baby.

If the baby really was waking and needed one of these things, that's great that mom was there and eager to see to their needs. If the baby was just transitioning from one sleep cycle to the next, you've just interrupted the brain as it was learning an important skill. The brain learns to connect sleep cycles seemlessly (letting mom and baby sleep for longer times) through practice. The brain has to work at connecting those sleep cycles without interruption and it starts learning to do this from day one.

We have a video monitor and it is a lifesaver! When I hear Alex cry I can look at the monitor and see what's happening, especially with Alex's reflux issues I look at the monitor a lot. Alex has made all sorts of noises in his sleep since birth. I have been attentive and have learned which are his normal sleep noises and which are the sounds that tell me he's about to wake up. From the beginning I made it a point to give Alex a brief moment to try to get to the next sleep cycle without me. I don't let him cry for hours on end (or even seconds on end when I can help it). I just pay attention to the cues that his body gives me. In doing this, I'm helping him learn how to sleep.

By respecting what his body is telling me, I'm teaching him to do the same. In the same way that we pay attention to the cues he gives when he's hungry or when his tummy is hurting him, we pay attention to signs that he might be sleepy. When he wakes up we pay attention to signs that he might be going right back to sleep or that he's fully awake and ready for what's happening next. In the process of respecting what his little body tells us we send the message to him that it's important to listen to our bodies- sleep when tired, eat when hungry, stop eating when full, get up when you've had enough rest.

I hope that all made sense and maybe it'll help some tired mommies out there. Alex is two months old, sleeping six hours at night and I think we could be sleeping through the night any day now.