Saturday, December 7, 2013


Where do I begin.... I have been putting off writing this post because we still do not have all of his problems solved (but maybe we never will!)

At Oliver's 4 month well check, I mentioned to his pediatrician that he sounded hoarse.  I hadn't really noticed or thought it was a problem, but my mom had asked if he always sounded like that.  I also brought up the fact that he wasn't breastfeeding well and that I thought he had a tongue tie.  The pediatrician sent us off to see an ENT doctor and we had to wait about a month to get in with her.

We saw the ENT on I believe a Tuesday, and she said that he was tongue tied and that he also needed a bronchial scope.  Since he was going to go under general anesthesia anyways, she said she would clip his tongue then so it wouldn't be painful for him. (I believe I posted about this back in August when it all happened.)  She also recommended us to put him on Prilosec for what we had just discovered was acid reflux.

I was really hoping that the tongue tie being fixed would be a cure all to his breastfeeding problems.  Nope.  I tried nursing him the day after his procedure but we were still not successful.

I met with the ENT again 4 weeks later for a follow-up.  She asked if his meds were working to control the reflux and if his hoarse voice was gone or not.  I told her that he was still hoarse, so she referred me to GI and also to get an upper GI done.  If you are unfamiliar with an upper GI, its basically a test where they have you swallow barium after not eating for 3-4 hours and take images while the barium is being swallowed.  They look for any anatomical abnormalities.

I scheduled the upper GI and I was not expecting anything to come of it.  He drank the barium like a champ (probably because he was hungry!!) and they took a bunch of images while he drank it.... rolled him side to side, and also had him lay flat on his back.  I should have known something was up when the radiologist left the room to go talk to someone else and didn't come back for a bit.  She saw something "abnormal" and wanted a second opinion on what she saw.  She mentioned that it could be redundancy of the duodenum or malrotation of the duodenum.  Don't ask me to explain those two things to you, but one would have meant surgery.  I was freaking out to say the least!  I called my mom after the procedure in hopes that she could explain to me what the radiologist said (because I was crazily trying to just remember the words she used!)  She said to come back and repeat the procedure in 2 weeks because she wasn't exactly sure what she saw and that it was inconclusive.

I was anxious to get the procedure scheduled, so I called every day until they had put in a new referral for the upper GI.  I scheduled it for exactly 2 weeks because it was killing me not knowing what was wrong and if my baby was going to have to have surgery!  I was not excited at the thought of surgery, but just wanted to know one way or the other.

We completed the second upper GI with no problems and guess what? Everything was normal! Hooray!

A few weeks later we made an appointment with a GI doctor to figure out what was going on with Oliver's reflux.  The ENT passed us off to the GI doctor and warned us that she may say that it wasn't actually reflux at all because they tend to disagree with the ENTs.  Great.

Let me just stop for a second (sorry this post is so scatter brained!) and list the reasons WHY we started seeing all of these doctors in the first place.
1.) He had a hoarse voice
2.) He was waking up every 2-3 hours at night and was completely inconsolable some nights.
3.) He was arching his back and resisting feeds.... he was acting like we were putting boiling water down his throat when we fed him is bottle
4.) He had horrible gas and would sometimes pass gas for HOURS, finally have a bowel movement and then fall asleep (to me this said that his tummy was really hurting)

Okay, so back to the GI. I had taken Oliver in to see the doctor TWICE before our GI appointment.  Once I saw one of the physician's assistants because I couldn't get in with his pediatrician and she said he was waking up at night out of habit... because he had gotten"used to" me getting up to feed him.  She said there was nothing medically wrong with him and that I just needed to let him cry it out.  Um, no.  You are wrong.  A couple weeks later (I think) I took him in again because I just didn't know what else to do.  He was just in so much pain, wasn't sleeping at night, and I felt so helpless!  The pediatrician was so patient with us and oh boy was I grateful.  She even made a call to GI to see what she could do to help us (NOW!) and if they could move up our appointment (Which they did!)  At that point, we doubled his dose of Prilosec, and talked about changing his formula to a hypoallergenic formula such as Alimentum or Nutramigen.  The doctor she talked to on the phone that day didn't think that was his problem... but I suppose its hard to diagnose something with little information over the phone.

A couple days later, we finally got in to see the GI doctor.  She wasn't my favorite person, and I didn't really agree with everything she said.  She said we needed to put rice cereal in his bottle and switch him to hypoallergenic formula... both of which I was not really okay with.  The reason for the cereal is to keep babies from spitting up.. and he never even did that! He has silent reflux.  We got home that day and tried to give him Nutramigen and he would not drink it if it was the last thing on earth.  That stuff smells so bad that I can't say I blamed him.  The GI doc told me to put Splenda in it for a few days to get him to drink it and my first thought was, HELL NO!  I don't eat/drink anything with artificial sweeteners because I don't want it in the boys' breastmilk so I sure as heck was not going to put it in my little boy's bottle.  So, if he wasn't going to drink it, what was I going to do?  Option 2: Eliminate dairy and soy from MY diet so that it not be in Oliver's breastmilk.  Easy, right? Wrong.

I started on a soy/dairy free diet the next day and continued to try and get Ollie to drink the icky formula so that I had something to supplement with.  I still had no luck, so I got some sample cans of a different hypoallergenic one that I eventually did get him to drink.  But, it was $27.99 for a small can so I decided to stick with the dairy/soy thing as well so he could still have mama's milk.

Five weeks later we had a follow-up with the GI doctor.  (Last Monday.. Nov 25th)  After writing this and thinking back to how bad his reflux/stomach issues were, I really can't believe how much it has improved.  I told the doctor that he wasn't having problems anymore and that everything was going fantastic.   Somehow it came up that I was still feeding him breastmilk instead of switching just to formula and the doctor was very surprised.  I felt like I had to explain myself to her and I really shouldn't have had to.  At one point I said something like, "Why would I give him fake milk when I can give him breastmilk?" She got very defensive and told me how they are able to make formula very close to breastmilk these days.  I'm thinking to myself, "Lady, you must be nuts!" I mean seriously!  Formula is made for any infant and my milk is made for MY BABIES!!!  I respect other mothers' decisions to formula feed, but I really expected her to tell me it was great that he was still receiving breastmilk and not make me feel like crap. I have no problem using formula, because that's what its there for but its not my number one choice.

At the conclusion of the appointment, she said we can add soy back into the diet! YAY!  I was pumped when I heard that.  At the end of December, we are also going to cut his Prilosec in half and see what happens.  If all goes well with that, when he's about 11 months, we will re-introduce dairy and hopefully lower his medicine even more.  She said we would switch to a "gentle" formula, but I am NOT switching to formula completely so I'm interested to see what she is going to say about that.

All in all, he is doing well.  He's now sleeping all night long too! The past two weeks he started waking up only once per night, eating, and going right back to sleep.  And in the past two days, he quit waking up during the middle of the night!! After 9.5 months, this mama might actually be able to get a full night's sleep and needless to say, I'm really really excited about that!!


Garlic Bread said...

So there is something in formula that didn't suit him? How is he with the regular food you give him? I'm glad you managed to resolve that problem and that he doesn't suffer anymore.

Jessica said...

Yup, he most likely has a dairy sensitivity that he will hopefully outgrow. Supposedly by 12 months babies outgrow their dairy sensitivities and reflux problems. He's doing okay on regular food. Not great. He goes to feeding therapy for that. Guess I Forgot to mention that :)