The growing file

When we started this journey for O's acid reflux almost three months ago I had pulled out a simple manila folder to keep the paper work for the GI doctor and the approved referral in. When we were referred to get a GI swallow study and start feeding therapy I placed the approved referrals in there as well. When we began feeding therapy it turns out that at the end of each session she gives us a copy of her notes for our own file so into the folder it goes. After each specialist appointment you get a document called an after visit summary with everything we talked about, what changes were made and what follow ups need to happen and after each appointment those papers go into this folder as well. At O's six month appointment his pediatrician expressed concern about O's lungs and what the aspiration might be doing it so he referred us to the pulmonologist with the diagnosis of chronic pulmonary aspiration. The approved referral came in the mail so into the folder it went to be brought to the appointment just in case they hadn't received a copy. When the appointment was scheduled a bunch of paper work was sent to be filled out so I filled it out and put it in the folder. Tomorrow the ever growing file will come with us to the pulmonologist. On the questionnaire given to us by the pulmonary medicine department it had the question "what would you like us to help you with today?" to which I wrote "to tell me that we don't really need to be here and everything is fine." But the reality is that everything is not fine yet. His acid reflux continues to be a major source of pain for him especially at night, he sleeps horrible because he is constantly writhing in pain. He continues to choke on food and wheeze frequently. His GI doctor wants to see him next week to discuss him undergoing an endoscopy and pH probe. Another referral, another after visit summary to fill the folder even more.

At nearly 7 months my son sees three specialists. He also has an incredible personality and is one of the happiest babies I have ever know, despite the pain he lives with day to day. We were told that once he started crawling, sitting up, pulling up and cruising the furniture that we would see an improvement in the reflux but we haven't despite the fact he is doing all those things. So we have hit a place where some big decisions have to be made, some important and scary decisions. Do we put him through these invasive tests? Do we maybe consider the operation? Are there other things we can try that we haven't thought of? Someday that folder will sit within our filing cabinet no longer necessary, easily ignored..but I am starting to wonder how big it will get before we get to that place?

XoXo,
Elle

Why I don't sleep train

I have made the choice not to sleep train because 

1. I don't think it actually works 

2. I don't feel right letting my child cry it out and 

3. It's just not the right choice for us. 

It's not to say that for everyone it's not the right choice but for us it's just not.

Recently my BIL and SIL gave us a couple of baby books. Most were about food

but there was one about sleep training.

I handed it back to my BIL and said "Actually we don't plan on sleep training."

To which he replied "Well eventually you will have to."

Actually no I won't. You see none of us were sleep trained, the Feber method didn't

exist when I was a child and yet somehow I learned how to sleep just fine.

I know people who sleep train and they claim it's amazing. However I also know that 

whenever anything changes they have to sleep train again. The child gets sick, time 

to sleep train again. Baby's teething? Time to sleep train again.

Personally that doesn't make a lot of sense to me.

I also don't feel like letting your child cry themselves to sleep is ok.

It might be for other people. I just can't. I want my son to know that if he

is hurt, or scared, or just wants to be comforted I am there.

I am a parent 24/7 not between 7am and 7pm.

The first chapter of the Feber book says that it is not right for children with

painful conditions. Unfortunately that is my son. So even if I wanted to sleep train
(which I don't) O would not be the right candidate anyway.

I am not saying this to start a debate or tell you that you are wrong for sleep training.

I'm sure if you sleep trained you think it's amazing. I just know for me it wasn't the right choice.

I want my son to know when he is tired he should sleep and so far he does. He can nap anywhere 

and he can fall asleep easily at that. I also want my son to know when he hurts in the middle of the

night I am there to comfort him. And I do every night. Because for him laying down for long 

periods of time makes his acid reflux worse and he does wake up in pain.

We decided to not sleep train and that is ok.

XoXo

Elle

Six Month Milestones

I got a check list in my e-mail the other day regarding what milestones my 6 month old may or may not have hit by this point.

Here is what O can and can't do. All the ones in blue are the things he can do, everything in red is what we are still working on. And yes I added commentary (in purple)..and yes I realize you probably don't care what he can do..but yes I am going to post this anyway and then in 3 months when I get around to filling out his baby book I will go back and look at this and boom.. I wont have to try to remember.

Physical and motor skill markers:

• Able to hold almost all weight when supported in a standing position. He has been doing this since he was around 2 months old- the kid has super strong legs. 
• Able to transfer objects from one hand to the other
• Able to lift chest and head while on stomach, holding the weight on hands
• Able to pick up a dropped object
• Able to roll from back to stomach
• Able to sit in a high chair with a straight back
• Able to sit on the floor with lower back support
• Beginning of teething Two teeth now!
  
• Increased drooling
• Should be able to sleep 6 - 8 hour stretches at night. I wish!!! We get 4-5 hr stretched now which is a huge improvement over the 1-2 hour stretches we were getting.
• Should have doubled birth weight- 17 lbs 4 oz.. still not doubled but close!

Sensory and cognitive markers:

• Begins to fear strangers. Yeah my social little guy LOVES strangers
• Begins to imitate actions
• Begins to realize that if an object is dropped, it is still there and just needs to be picked up
• Can locate sounds not made directly at the ear level
• Enjoys hearing own voice Yes he loves talking, screaming, growling, ect!
• Makes sounds (vocalizes) to mirror and toys
• Makes sounds resembling one-syllable words (example: da-da, ba-ba)
• Prefers more complex sounds
• Recognizes parents
• Starts to imitate sound

Owen can sit unassisted no problem. He has also started crawling which means I am constantly having to tell him no and take away things. Which he now cries when I take away the things he wanted.

I cannot believe my little guy is six months!

How to keep a 5 (almost 6) month old entertained

Give him something that rolls away from him!

Gotta love the "I'm not confident enough with my crawling on hardwood so I'm only going to use one leg move."

XoXo

Elle

Such a big boy!

This little guy is 5.5 months old.

This week we will start his feeding therapy. Which means he will be starting solids.

Despite having a developmental delay in eating (the dysphagia and aspiration) and the GERD our little guy is still doing really well.

He is now 17 lbs and 27.5 inches long.

He has almost doubled his birth weight and I have no doubt by 6 months he will have completely doubled it.

O is making great gains in all his gross motor skills. 

He can sit on his own (he still topples but can sit for like 10 minutes unassisted), rolls from front to back and back to front, and has almost completely mastered crawling (he stops and goes but has the actions down right). 

His fine motor skills are coming along just great to! He can pick up objects big and small, pass items from one hand to another (or most recently from hand to mouth..everything goes into his mouth). He has started to use a pincer grip too

O also cut his first tooth last week.

It's small but super sharp!

He is a very happy and social baby and loves to be played with.

We couldn't be prouder of our little guy!

XoXo

Elle

It's more than just spit up

When O was born one of the first thing I noticed about him was the fact that he spit up..a lot

I noticed that when he ate he made this strange raspy, high pitch squeek. 

And I noticed that he was very resistant to breast feeding.

Pulling away from it instantly, screaming and arching his back.

He would be inconsolable and I had no idea what was going on but I knew it wasn't right.

I told my MIL and she would respond "Oh don't worry all babies spit up, it's normal."

I told his pediatrician and his 2 week checkup and when we went again at 1 month to make sure he was gaining weight to which he responded "That's just spit up, it's totally normal."

I would express concern to people about how much and how frequently and every time I heard the same thing "It's just spit up and it's totally normal."

When O was 2.5 weeks we began working with a lactation specialist who felt it was more than a breastfeeding issue. She called in a pediatrician who felt it could probably be Acid Reflux and so he started him on Zantac.

When that failed to work O was switched from Zantac to Prevacid at his 2 month appointment.

At O's four month appointment he was diagnosed with Sandiefer's Syndrome a neurological reaction to the Gastroesophogeal Reflux Disease.

His pediatrician decided that O should see a pediatric gastroenterologist.

At four months O saw the pediatric GI who decided it was a good idea for him to see a feeding specialist and to have a specialize test known as a swallow study and upper gi series. 

The feeding therapist decided that O was one of the happiest, strongest, social babies she had ever met.

She was amazed at his ability to stand and to pull himself up to sitting, she was fascinated by his ability to roll and scoot and the way he intently held eye contact and was so curious.

She was concerned however by the way it sounded like he was aspirating when drinking non thickened liquids, the way in which he got fussy after he ate, and his wheezing lungs.

She noticed that he was lacking a gag reflex and that he had developed a slight torticollis from constantly turning his neck away from the pain.

She agreed that we should continue putting a tablespoon of rice cereal into his four ounce bottles and that the test we were scheduled to have was definitely necessary.

We had our appointment on Tuesday. O hated the taste of barium but still managed to charm the feeding therapist, radiologist, and radiology technician who were there for the test.

What we know now is what we have always suspected..it's more than just spit up.

O has severe acid reflux.

He has a delayed swallow (dysphagia). While most people swallow when the food or liquid hit their uvula, my son swallows after that.

As a result O also suffers from aspiration, meaning that fluid enters his lungs every time he eats anything that is not thickened.

We will see his GI specialist tomorrow to determine what the plan is.

She didn't think his reflux was that bad when she met him.

The results of the test were a complete shock to her.

Because he is happy, because he is social, because despite all the stuff he is going through he is meeting milestones and growing.

Babies with severe acid reflux..don't do that usually.

We have a plan to attend feeding therapy for the next couple of months to teach O to eat without choking.

Mama's trust your gut. When you have a suspicion that something is not right get it checked out!

We have no idea what the acid going into his lungs have already done damage wise, we know that had we not caught it asthma, pneumonia, and lung damage could have been possible.

We don't know when and if he will outgrow this.

Currently I don't even know what our plan is.

What I do know is I have never been so sad about being right in my life.

I wanted them to tell me I was just being a paranoid new mom.

That's not the reality though, the reality is I was right.

It was more than just spit up.

XoXo,
Elle

Remembering Mom..

It's hard to believe it has been 5 years since my mom passed away. 

So much has happened I graduated college, decided teaching was the career I wanted to do, I met The Hubs, we got engaged then married, we bought a house, we had O. 

I wish she could be here to hold my baby boy, to get to know my wonderful husband to see the person I turned out to be. 

I think she would be happy with the way my life has turned out. 

I think about and miss her every day. 

I still can't believe it's been 5 years since we said goodbye.

 XoXo,
Elle