About halfway through our NICU stay both twins were diagnosed with reflux. Blake’s was solved mostly by keeping him up right after feedings, and pacing him. The closer we got to their due date the better things got for Blake. This was not the case for Addison.

 

They first tried her on medicine, Prevacid, but that didn’t work. Next they tried adjusting her feedings so that they would run slower over a period of a few hours. That didn’t work, so they tried pushing her feeding tube down further, past her sphincter muscle and in to her intestine, bypassing the stomach all together and in hopes of stopping the refluxing. She was still having Brady spells and refluxing but not as bad or as frequent. Her case was so severe that they did not even want to attempt oral feedings.

 

At this point it was decided that she would be transferred to another NICU where there was a GI doctor on staff and would have her evaluated for a G-tube and Nissin Fundoplication. The Nissin Fundoplication is surgical procedure to treat reflux. During the procedure the surgeon would wrap the top part of the stomach around the bottom of they esophagus and stitch it into place, which reinforces the closing function of the sphincter muscle, thus preventing reflux.

 

We were very hesitant to put our baby under the knife for any reason, and while we waited for her transfer I started researching the procedure and looking for other’s experiences. There were a lot of mixed reviews about the procedure which only left me more confused, nervous and undecided.

 

When Addison was finally transferred to the new hospital, we had to wait a few days to meet with the surgeon and come up with a plan. First thing he wanted to try was moving her feeding tube back to her stomach and see how she responded, it was clear she still wasn’t tolerating it, even though she was still on reflux medicine. He also wanted to run a pH Probe to just how much reflux she was having and how often, but to do that they would have to stop her medicines and risk an increase in the reflux and potential aspiration. The surgeon was very hesitant to do the pH Probe due to the overwhelming volume she was already refluxing with meds, and cautioned us and we were left to make the decision. Seeing her in pain and choking on formula over and over and needing to be suctioned several times a day… we knew our only option was the surgery.

 

On 6/13/11, Addison underwent surgery and they were able to successfully perform the Nissin Fundo and place her G-tube. To be honest things were very rough for a few weeks after surgery, and again we questioned why we did this to our little girl. The surgery itself was successful but afterwards she stayed intubated for almost two weeks and ended up with yet another staff infection, these were things we were prepared for but not expecting. The Neo who sent her to surgery reminded us of where she started (she had always been sick from a respitory stand point) and told us point blank to expect a decent intubated period post op. The reflux certainly didn’t help her already fragile airway.

 

After those first two weeks post op, things did get MUCH better. I spent my days learning how to care for her G-tube and how to feed her. All while managing her twin brother who was already home and waiting for his sister to join us. When she came home things went well, but I must admit, I had a very strong love/hate relationship with her G-tube initially (and some days still do). But as the weeks went on and she got bigger and stronger and healthy I knew we made the right call for her. We did experience retching (where she would gag a little but couldn’t bring whatever was causing it aka reflux, up), but that too got better over time and we learned some things triggered it.

 

She is now almost 18 months old and is still primarily G-tube fed, but otherwise doing well. She is no longer in pain from her reflux and developmental is not too far behind. Had we not done the surgery it’s hard to say how much longer they would have kept her in the hospital waiting for her to out grow the reflux. 

HOW IS GER DIAGNOSED?

If your infant or child has any of the above symptoms and you are concerned that she may have reflux, talk with your pediatrician about having her evaluated. GER may be diagnosed by a single office visit, or a referral may be needed to a pediatric gastroenterologist for further evaluation. Your doctor or specialist will review your child's symptoms, determine if her weight gain is appropriate, and possibly order special tests. These tests may include an upper gastro-intestinal X-ray (UGI), a milk scan, a 24-hour pH probe, or an endoscopy.

My son was sent back to the NICU (ugh!) and it was there that they started to run some tests on him. He was seen by the Speech Therapist/ Feeding Specialist to see if it was his suck, swallow, and breathe. It wasn’t. I told them that he was obviously uncomfortable and I was convinced it was reflux. They don’t like to put babies on reflux meds but I really pushed them to figure out what was going on. He went in for an Upper GI (UGI) and they found that within a mili-second of him swallowing, the food came back up and down over 7 times. Thankfully, he wasn’t aspirating (where the liquid food comes back up and goes into the lungs). So it was then we got our diagnosis of “severe reflux”.

TREATMENT:

Treatment of GER varies from simply thickening formula, to medication, to surgery. Your doctor may begin with thickening the formula and suggesting that your baby be in an upright position most of the day, especially after eating. Try to hold your baby without putting pressure on her abdomen. Burp your baby frequently (every 1/2 to 1 ounce) and encourage her to suck on a pacifier between feedings. This helps to keep the esophagus in motion, pushing anything in the esophagus back into the stomach.

If an infant is in pain, has slowed or stopped eating, or has apnea or bradycardia that is caused from reflux, more aggressive management needs to be done. Medications such as Zantac or Tagamet or Prilosec that decrease or block the production of acid, and/or medications such as Propulsid or Reglan that improve digestion, may be prescribed. These medications are often used in combination with one another.

Most children will out grow GER by one year of age. As children grow, their esophagus becomes longer and the stomach naturally begins to wrap around the muscle at the top of the stomach.

My son had been put on Allimentum formula prior to his initial discharge because of suspected Milk Protein Intolerance. This seemed to help his reflux as well because often times reflux and MPI go hand in hand. I stopped pumping, which for preemie moms and preemie moms with reflux babies can be an extremely difficult decision. He was also already on a low dose of Zantac. With the new diagnosis, we were to thicken his formula with 1tsp of rice or oat cereal (alternating) per ounce of formula. He was also put on Prilosec and Maalox (as needed). He was to be kept upright most of the day. We got a GI specialist on our team and we checked in with him monthly and adjusted his medications as he gained weight. He was very important because a GI specialist will dose your baby at the highest dose as opposed to a Pediatrician who tends to be more reserved.

I wish I could say that it fixed everything immediately. It didn’t. We played with his medications and the thickened feeds to find the right balance. He lived in a Moby Wrap or his Fisher Price Rock n Play (please get one if your child has reflux, you will thank me!) or his swing or his car seat! It took months for the pain to stop when he ate but I can say that by the time he turned 1 adjusted, he was off of all of his medications and we hadn’t been thickening his food for months. My son’s reflux was one of the most difficult things that I have ever endured and it wasn’t even me with the pai

ADDITIONAL INFO:

I mentioned that babies spit up. They do spit up and if you have a happy spitter then there isn’t a real reason to put them on medication for reflux. I would still talk to the pediatrician about it to let them know what is going on and to check weight gain. The medication does not STOP the reflux, it only makes it more comfortable for them.

The other thing I wanted to call attention to is something called silent reflux. It can be scary to not know that your child is refluxing. It is harder to detect because they aren’t spitting up. But here are the symptoms for silent reflux:

These last two signs are possible indicators of Barett's Esophagus. The risk of Barett's Esophagus is slightly higher with silent reflux because there is generally more damage to the throat with silent reflux in infants, although it is still a fairly low risk.

HELP:

Having a child with reflux can trigger many emotions. It is normal to feel anger, frustration, and sadness. Sometimes it helps to talk with those who can empathize with you and understand your feelings and concerns, such as other parents of children with reflux. You'll need support to make it through these difficult days. A national parent support group called PAGER (Pediatric Adolescent Gastroesophageal Reflux Association, Inc.) can help you find any further assistance you might need. Their website address is http://www.reflux.org or they are located at PO Box 1153, Germantown, MD 20875-1153, (301)601-9541. 

OR

E-mail one of the Resource Blog creators and they can get you in touch with me!

(Information taken from: http://www.prematurity.org/baby/reflux-maroney.html and http://www.pollywogbaby.com/refluxandcolic/silent-reflux-infant.html )

Each week the Preemie Resource Blog will look at one issue that effects preemies and their parents.This week we will discuss reflux, one of the most common issues among premature babies. Read Stacy's story about her son's struggle with reflux.

 

REFLUX

Reflux is one of the most common but least diagnosed issues with preemies. I’ve found that many doctors do not want to start a medication regimen for preemies in the NICU. What that means is that many babies go home and continue to suffer out loud or in silence.

If you have ever had reflux or heartburn, you can imagine what a little baby is feeling every time they eat. I remember crying 8-10 times a day- every time my son ate. It was heartbreaking to have to feed him when he was in so much pain. Then the spitting up got worse. I was told; “babies spit up.” This was not a baby just “spitting up”. 

WHAT IS GER?

“GER is Gastroesophageal Reflux. Gastro means stomach, and esophageal refers to the esophagus, the tube inside the throat that connects the mouth to the stomach. A muscle at the top of the stomach (also called the Lower Esophageal Sphincter or LES) naturally opens and closes to allow swallowing, burping, and vomiting. Refluxing occurs when the stomach acid and partially digested food flow back up through the LES into the esophagus. All children and adults will naturally reflux throughout the day, especially after eating. However, if the muscle opens too frequently and refluxing occurs too often, complications can develop.

Premature infants have an increased risk of developing GER. There are several medical conditions that can cause reflux, but in preterm infants, the most common causes are immature muscles and abnormal breathing from chronic lung disease. If the lower esophageal sphincter is weak or underdeveloped, it can remain open when it should be closed, letting the stomach contents flow back up the esophagus. When an infant or child breathes abnormally because of chronic lung disease, the muscles used for breathing work harder. As these muscles work hard to breathe, they can pull on the muscles near the top of the stomach, stretching the sphincter and causing it to remain open.

When the stomach contents flow inappropriately up into the esophagus they bring acid from the stomach. As the acid irritates the tissue inside the esophagus, it becomes inflamed and reddened. This condition is called esophagitis. Esophagitis is painful, similar to the pain of heartburn. This is why an infant will refuse to eat or stop eating - she is protecting herself from the pain of the acid touching the damaged tissue. If the reflux is severe, the stomach contents may go high enough into the esophagus to be aspirated or spilled into the lungs causing choking, color changes, frequent respiratory infections, apnea (breathing slows or stops) and/or bradycardia (slowed heart rate).”

SYMPTOMS:

As I said, “babies spit up” but reflux is much more than that. Here are some common signs and symptoms:

•     spitting up frequently (more than 2 times a day);

•     fussy often throughout the day (specifically before, during or after eating)

•     refusing to eat,

•     fighting eating;

•     taking only small amounts of formula or food, regardless of the amount of time since the last feeding;

•     back arching during feedings;

•     bradycardia;

•     choking or apnea during or after eating;

•     skin color turns pale or grayish during or after eating;

•     poor weight gain; and/or frequent respiratory infections.

Many parents say, "She acts like it hurts to eat" or "It just seems like she is in pain."

My son would spit up every time he ate, even if he was held upright for an hour after he ate. He refused to eat and would only eat a small amount every 2 hours. He would arch his back and cry and scream. It broke my heart because he was a happy baby when he wasn’t eating or refluxing. Although his weight gain was slow, he was always gaining so the doctors weren’t concerned. But mother’s intuition told me that it was more than just spitting up. Eventually, my son spit up so badly that he stopped breathing and my husband and I had to bulb syringe him until color came back to his face. It was after that point that we finally got our diagnosis.

For more on reflux--how is it diagnosed, treated, and other how helpful information--click here

For those of you who don’t know me, I’ll start my story a year and a half ago as a bright-eyed Pollyanna and a newlywed.  My husband and I always wanted to have kids and planned to start building our family a year after our wedding.  So when the time came to start trying, we read the pregnancy books, researched all the cool baby gear, and prayed that we’d be blessed with a healthy little baby 9 months later.

But that isn’t what happened.

After about 4 months battling extreme morning sickness and fatigue, we lost our baby girl, Frances.  I was at my doctor appointment before my planned trip to visit my mother for her end-of-October birthday the day we discovered I’d miscarried.  My husband and I were devastated!  I took some time off of work, and we both cried a lot.  I was very angry at God for taking my sweet baby away from me.  So I was decidedly unthankful last Thanksgiving.

Two months later, I discovered God was giving us a second chance.  I was pregnant again!  My husband and I were cautiously excited.  We’d planned to try for another baby, but it happened so soon.  My body just wasn’t ready to support another life.  Two weeks after my positive test, the trouble began.  I was put on strict bed rest to prevent not only my baby’s death but my own as well.  As my first trimester came to an end, I was rushed to the hospital because I was starting labor due to a placental abruption.  My doctor told me I wouldn’t be pregnant in the morning.  But my son and I are fighters, and we survived.  In all, I spent 6 terrifying months lying in bed, including 6 long weeks in a hospital bed praying the baby would just “stay in one more day”.   I was angry at God for putting me through such a terrifying ordeal and angry at all the people who just didn’t understand what I was going through.

My beautiful son, Anthony was born 9 weeks premature, weighing just 3 lbs. 12 oz.  He spent 6 weeks in the NICU and came home on oxygen and an apnea monitor, but he was finally able to eat and breathe on his own by then.  At 4 months of age, he is now thriving and weighs more than 12 lbs!

While I still have a tough time dealing with the horrors of the last year, I’ve come to realize that gratitude is a process.  I am still angry at God a lot of days.  I feel like my babies and I are being punished, though I don’t know what for.  But in all that anger, I’m thankful, too.  As my confirmation students can tell you, I believe most bad things happen so we can appreciate the good.  So without much further ado, here is what I’m thankful for this Thanksgiving:

I am thankful for my husband who selflessly put his life on hold to care for me and our son. 

I am thankful for friends and family who shared stories of their own angel babies, too beautiful for earth. 

Who brought us pre-made dinners, cleaned our house, or even just came for an afternoon visit.  Who prayed every night or even just one time that we would get through our crisis and that everything will be ok.

I am thankful for doctors and nurses who took the time to ensure my needs were met, not just medical needs, but more personal needs as well, sharing stories about their lives, the doctor who brought his terrier in to visit me, and the nurse who searched the whole hospital to find me the Garden Salsa Sun Chips I was craving that day.

I am thankful for the women on my message boards, who shared their strengths and even their weaknesses and made the time a lot more bearable.

And most of all, I’m thankful for my son, Anthony.  Every morning, his bright smile gives me a reason to get through the day.  His cries remind me that someone needs me.  And his sleepy head on my shoulder tells me I’ve done my job of mothering well.

So I guess I am actually grateful to God, grateful because He put all these people in my life because He knew that I’d have to go through this and that I couldn’t get through it alone.