Mascara & The Baby Era: Be Your Childs Advocate

Two weeks ago we went back to Coopers primary care pediatrician because he is hardly eating anything and hasn't been for quite some time.

Cooper is a very small little guy.

He has been in the 3rd percentile for weight almost since he was born.

But at this visit he dropped off the charts and lost weight.

Many children have weight issues and eating problems, but that isn't the primary focus of Cooper's issues.

I haven't really shared this event in much detail before, but with issues happening now, I figured I would share in case something else is going to be done, and I can continue to update as we go through this process.

It has been 15 months since we found out what was wrong with our baby boy.

Starting from a little less than 2 weeks after Cooper was born, he started projectile vomiting.

A LOT and pretty frequently.

And I don't mean spit up.

I mean, full blown projectile vomit.

When this would happen, his bib, his outfit, wherever he was sitting or whoever he was sitting on, and the floor beneath, were all drenched in it.

He also had really labored breathing that was really loud, raspy and the little dip in his throat would suck in really deep when he was breathing.

I kept going to his then pediatrician (we changed pediatricians pretty early on due to issues we had with him) saying, "Something is not right. This isn't normal. Something. Is. Wrong".

This doctor treated me like I was a nervous new mom who was over reacting,

he said,

"Spit up looks like a lot, but really its only about an ounce"

he kept saying,

"New moms always are over-worried about their babies, but this is normal" and "Don't worry, you're just a new mom and everything isn't as bad as you think"

I pushed back and didn't get anywhere with him so I decided to see someone else.

We wound up seeing the pediatrician that I actually went to as a child.

He listened a little better but it still took multiple visits to get him to take me a little more seriously.

In February 2013 we were told Cooper had Tracheomulacia, which is where the trachea is flappy and that is why he was having issues with his breathing.

We were told it was COMPLETELY NORMAL and would take 4-6 months to strengthen.

The doctor also thought he had Pyloric Stenosis (an uncommon condition affecting the opening (pylorus) between the stomach and the small intestine in infants)

We were sent to the Emergency Room and admitted straight from the doctors visit to get an ultrasound (which came back negative). He spit up most of the feeding while he was there so they wanted to do more. They did a chest X-Ray, blood work and urine work which were all negative.

We were sent home.

There were more trips to the doctor and multiple "episodes" all throughout March.

We were sent to the Pulmonologist at the end of March and he wanted to have a scope done on Cooper but we couldn't do that with him so one would have to be scheduled.

This was around the time Jeff was also getting ready to fly out to Afghanistan from his base where he had been for the past 3 months.
The stress of that plus worrying about what was wrong with Cooper was affecting my nursing supply so we had to start Cooper on formulas, which he didn't well at all. He was vomiting more and more these days and we couldn't seem to figure out what was going on.

On April 7th, 2013, which was Jeff and my 1st wedding anniversary, Cooper and I went into the ER and were admitted again for his vomiting.

It was everywhere, multiple times and his stomach was distended.

Since we were in the hospital they did a scope on him and found out he actually had Lyrangomalacia which is further down in the throat than the Tracheomalacia. Lyrangomalatia is a congenital abnormality of the cartilage that then collapses on the structure during breathing, that causes airway obstruction and a stridor in the breathing which is the noise that we were hearing.

We now knew what was going on with his breathing but didn't know why he was throwing up.

They sent us home and put us in contact with an Ear Nose and Throat doctor to do a follow up with in the next few days so we could see what needed to be done.

On April 11th we went to the doctor again because he was retracting while he was breathing and they told us to come back in if we noticed that happening.

They said he was ok after they checked him out.

I wasn't comfortable being home alone with him when there were so many issues that kept arising, so we stayed at my Mother-In- Laws house. She was a nurse for many years and works at the hospital we had been going to in the IT department now, so I felt much more comfortable being there with her if something were to go wrong.

At this point Cooper is 2.5 months old and weighed 9.2 lbs.
Like I mentioned, Just a little guy.

On April 12th, Cooper projectile vomited 3 times, had dry heaves, and threw up again 2 more times.

We went back to the pediatrician who wanted an Upper GI with a follow through done in radiology because the doctor still thought it was Pyloric Stenosis.

We were sent back to the hospital to have the study done in the afternoon.
They did the test, which consisted of him swallow barium so they could watch it while it went down his throat, stomach and GI track.

Very quickly after they started they saw the liquid shoot out in the wrong direction on the scan.

They found out he had a Malrotation of the intestine, more specifically the Duodenum, which is the first part of the small intestine, It is located between the stomach and the middle part of the intestine.

Here is a little synopsis of a malrotation that will explain it a little better than I can:
A Malrotation is an abnormality in which the intestine does not form the correct way in the abdomen. It occurs early in the pregnancy (around the tenth week) and develops when the intestine fails to coil into the proper position in the abdomen. Malrotation is often not evident until the baby experiences a twisting in the intestine known as a volvulus. A volvulus is a disorder that causes an obstruction in the intestine, preventing food from being digested normally. The blood Supply to the twisted part can also be cut off, leading to the death of that segment of the intestine. This situation can become fatal if not treated as soon as possible (http://my.clevelandclinic.org/).

I cannot stress this enough to any moms of young ones reading this:
BE, YOUR CHILDS, ADVOCATE.
If something doesn't seem right, listen to your gut and don't take no for an answer.
I pushed and pushed and went into the doctors every time Cooper threw up like that.
They had to take it seriously. But it took some time.
Had I just listened to that first doctor, or not pushed or bugged the current doctor, I can not even imagine what would have happened to Cooper. He had a life threatening issue that no one knew about and never would have, had I not followed my gut. We are taught as children to listen to our intuition and gut. So don't forget to listen to it when it comes to your children!

We were admitted immediately.

They were going to do emergency surgery.

At this point I hadn't had contact with Jeff about the past few days being at the doctors or the hospital visit. He was getting settled into Afghanistan and had started missions right away.

We went through the Red Cross and tried to get a message to his unit about what was going on since he was out on mission and I couldn't contact him.

On April 13th at 8AM Cooper had surgery for the Malrotation.

My parents, my Mother-in-law, sister-in-law, my brother-in-law and his girlfriend, and my husbands Aunt and Uncle were there for the surgery.

Jeff called me from his calling card and was talking to me like it was just another day.

I was in tears and he asked what was wrong. He thought I was just really happy to hear from him after being out on one of his first missions and not having contact through it.

He called while Cooper was in surgery.

I asked him, "Have you heard anything from your commanders babe?"

He replied, "No, most of them are still on mission, why? What's going on?"

I told him. "Baby, Cooper is in surgery"

He couldn't believe what I just said. He was in shock.
I told him about the last couple of days and what we found out. I let him know that he was in surgery, but we wouldn't know anything else until the surgery was over, which would be in a few hours.

I encouraged him to just try and stay calm and call me back in a few hours when he was supposed to be out of surgery.

I still can't imagine how helpless Jeff felt that day.

I felt so incredibly helpless, and I was there with Cooper.

Jeff was halfway around the world in a war zone hearing that his baby boy was at home in surgery.

He is the strongest man I know for getting through that with the calmness he forced himself to have.

The surgeon came out a little later and said he was done.

They had to tack down the parts that were twisted, but that is all they could do because they couldn't physically change his anatomy.

But everything went well in the surgery and they would be moving him into the Pediatric Intensive Care Unit ( PICU) and we could see him there.

Seeing my baby boy less than 10 lbs,
curled up in a blanket,
laying on a crib mattress that is way too big for him,
while he was completely lethargic from coming out of anesthetics,
and tubes coming out of his mouth and nose,
was the most horrifying and overwhelming sight and feeling I have ever experienced.
I was hit with a wave of emotion when I first saw him.
I went in there expecting to see my baby boy,
but instead, I saw this helpless little baby who I couldn't do anything for.
I almost fell to the ground.
Thank goodness my dad was right behind me and he caught me.
I wasn't expecting to see my strong little baby look like that.
When I had composed my self enough I lay my head as close to him as possible and rubbed his nose like he loved.
When the nurses allowed me to hold him, I rocked my little boy, covered in tubes, in the rocker they had in the room, and prayed that he heal quickly.

Three days later, on April 16, Cooper was still in the PICU. They had the ENT doctor we were supposed to have a consult with in the office, come see us.

When he came in he asked me questions about how Cooper's stridor sounded, and what my concerns were. I told him how bad it was and that he worked incredibly hard to breathe. He treated me the same as all the other doctors. To him, I was a worried mom and I was overreacting.
He said that more than likely they wouldn't need to do anything because 95% of cases of Lyrangomalatia get better on their own.
He did the scope in the room and as he did it he said, "Wow. Ok, we are doing surgery"

Turns out, Cooper was in the 5% that needed surgery.
(Guess I'm really not just a worried and overreacting new mom.)

So that afternoon Cooper had surgery for that.

We were in the PICU for a few more days.

He was hooked up to an NG tube, IV, Heart monitor, and a pulse oximeter.
He was on a ventilator when he first got into the PICU after both surgeries, but he was off of that pretty quickly and transitioned to a CPAP and finally to hi flow oxygen.

On April 18th, in the middle of the night, Cooper had a fever of 103. It took a while to get him down from it. They were worried for a while because usually there can be a fever related to post-op, but his was out of that window.

Cooper was moved from the PICU to the floor and he was taken off oxygen and all the other tubes on April 20th. That was such a great day! He was starting to look and act more like my little boy!

A few days later, on April 22, Cooper spit up bile, so they took him down to get another Upper GI to make sure none of the areas they fixed for the malrotation had come loose.

Thankfully they hadn't so we were just brought back up to the room to monitor him more.

April 23rd, He had a swallow study done because he was having such a hard time eating.

They found that he needed to switch bottles and binks so that they forced him to actually suck instead of just having to press his tongue to the plastic like the ones he had been using.

On April 26 The doctors said we could go home, but we were waiting on the discharge paperwork from all of the surgeons and doctors.

April 27th at 7PM we finally left the hospital!

We had made it through 16 Days in the hospital and 2 surgeries.

My little bug will always be the person I will fight hardest for.

I will push when no one will listen.

I will bug the crap out of every single doctor in town.

He is my everything and I thank God for giving me the strength to do those things.
Had I not had the strength, my baby boy may not be here right now, and that is such an incredibly devastating thought.

Here are some pictures from right before the hospital and during the stay.
*I am not going to share the ones of him with all the wires attached of the ones immediately after post-op, as those are just too personal to us to share publicly*

Cooper in the crib during one of his ER/admitted hospital stays

Bath time right before the big hospital stay. Ironically this picture was taken after the biggest episode he had ever had

Cooper had to be put in this octagon tube/board to keep him from moving and so they could roll him in all different directions to get the images needed