Wednesday, December 11, 2013

Cry, Cry Baby

Colic. After hearing so many stories of miserable parents who have experienced colic with their child(ren), I think I'm safe to say that no parent wants to hear the confirmed diagnoses. I suspected Blake to be colicky early on, even though signs do not supposedly begin to peak until around week 6. When he was 3 weeks old I began mentioning to people that I was certain he was headed in that direction. I didn't really get a response from anyone regarding my "mom diagnoses." I mentioned it to his doctor (whom I adore), but I suppose he thought I was being premature at the time because he didn't really respond much to my concern.

 We were feeding Blake Similac Supplementation formula. By week 3, our happy little baby who only cried when he needed a diaper change or was hungry began exhibiting bouts of fussiness. I didn't seem to notice a pattern, just knew that there were moments where nothing I would do could console him. In a matter of days he had gone from simply being fussy to screaming for seemingly no reason, however, on "mom instinct" I knew something was going on. I began to notice certain signs that had me suspicious. I could feel his stomach gurgle, he would stretch all the way out and extend his legs then alternate bowing his legs-left then right. There were times where he would scream and his face would turn blue, and I would swear he was going to stop breathing. I told my mom what was happening and she recommended giving him gas drops. (Thank God for moms because I had no idea gas drops even existed for babies. Totally learning as I go here.) The gas drops seemed to give him some relief, but after it wore off the crying, no, screaming, would continue.

 After a few days I began to suspect it had something to do with his formula-perhaps a food allergy to dairy? I made the decision to switch him to soy formula. I tried Similac Soy. Within 2 days I started to notice a difference! I was pleased with myself (and the other moms who gave me some advice) because I thought the problem had been solved. What an easy fix! Blake had a few great days, with nothing but normal baby crying. It was short lived.

 On the 4th day his old problem returned in full force. My mom kept Blake on Friday night of last week while I had an event to photograph for a few hours. When I picked him up from her house she told me that he'd done nothing but screamed for hours, and that nothing she was doing would soothe him. She told me that it was obvious he was in some kind of pain and that I should take him to the doctor as soon as I could. Thankfully, his doctor's office has weekend hours on Saturday. I woke up at 8am the next day to make a same-day appointment, explaining that my child was screaming and it seemed to be a tummy issue. (Thanks to my mom for going with me since my husband had to work!) The doctor that we saw, Dr. D, was very nice. He listened to my concerns and did a thorough examination of Blake, or attempted to, as Blake wasn't very cooperative and most of our visit was spent yelling over his cries just to try to hear one another. He diagnosed him with GERD. (You can read more about GERD in infants here.
Basically, it's acid reflux. Dr. D. said Blake was crying so much because hours after feeding his food was resurfacing in his esophagus causing him to be uncomfortable. He said that most likely his stomach muscles weren't fully operating (developed) and couldn't handle all of his food at once, so instead of digesting everything, it was resurfacing. He prescribed him Zantac, to be given twice a day. I was to burp him after every 2 oz of formula (as he ate 4 oz for each feeding), and I was to keep him upright for 30 to 40 minutes after each feeding. While this diagnoses seemed likely, I left there thinking there had to be something more. Again, it was just a mommy-feeling that I couldn't explain. In the car on the ride home I told my mom that I really thought there was something more going on, but I'm no doctor.

When I arrived home with Blake I immediately started him on his medication. The rest of the day continued to what had become our normal day. Sleep, eat, cry, play, cry, eat, cry, sleep, cry, cry, cry...you get the picture. We went through our routine that night. Bath, feed, diaper change, swaddle, cuddle, bed. Days were bad, but nights were actually easy. Patterns had started to emerge at this point. He always woke up in a great mood, after about an hour of being awake the crying would start and would continue sporadically throughout the day. Between the hours of 5-7 PM were (and remain to be) the worst. Once he's asleep he's great until the next day. Even middle of the night feedings are a breeze.

 On Sunday night, the day after we'd received the GERD diagnoses, he projectile vomited at 1AM. Baby spit-up isn't cause for concern, but I knew projectile vomiting wasn't normal. Still, I told myself not to worry since it was, so far, an isolated incident. After he vomited he wouldn't take the rest of his bottle so I consoled him, then changed his diaper, which I noticed was black and what I would describe as very tarry-like (thick). He fell back asleep, and awoke again at his regular 4am time to be fed. No issues. On the next 2 feedings on Monday he projectile vomited again, this time hitting the wall! I called his doctors office and explained the vomiting and the color of his stool. They told me to take him to the emergency room because the symptoms he was having sounded like Pyloric Stenosis, and that was something we either needed diagnosed immediately, or needed to rule out. You can read more about Pyloric Stenosis here: 
Pyloric Stenosis is a gastrointestinal condition where "a narrowing of the pylorus, the lower part of the stomach through which food and other stomach contents pass to enter the small intestine. When an infant has pyloric stenosis, the muscles in the pylorus have become enlarged and cause narrowing within the pyloric channel to the point where food is prevented from emptying out of the stomach." I was told this condition can occur in first born males at 4 weeks. Blake fit that exact criteria which is why they wanted me to go to the ER. If diagnosed, he would have to undergo surgery. We spent 6 hours in the hospital running tests. My poor baby had to have a sonogram, an x-ray, and was poked and prodded numerous times. THANKFULLY, his tests came back negative for Pyloric Stenosis. At the end of the day, the doctor confirmed the diagnoses of GERD but said he had a very severe form of it. She told me to feed him only 2 oz of food at a time, and to stop at each ounce to burp him, and to have him sleep upright at at least a 45 degree angle. Before we were discharged she made me promise to follow up with our pediatrician the next day.

 That night (Monday) I noticed that Blake was eating less and less. I know the doctor said to only feed him 2 oz at a time, and that was my intention, it was obvious that was all he wanted. I figured it was going to be a battle to stop him at 2 because he was used to eating 4. I was certain he would cry, begging for more food, but after 2 oz he rejected the bottle completely. During his first feeding on Tuesday morning he began to cry AS he was eating, pushing the nipple of the bottle out with his tongue after half an ounce. I called his pediatrician for the follow-up appointment and they were able to see us that afternoon. We weren't able to get in to see our regular doctor, Dr. G, so instead we saw Dr. S on Wednesday (yesterday). He intently listened to my ranting. I started with our visit to Dr. D on Saturday and brought him up to speed. He said while GERD was very likely, it seemed more to him like a food allergy. I explained that I'd switched him to a soy based formula, but thatI wasn't seeing an improvement. He told me that we may need to switch his formula to Nutramigen, a formula made by Enfamil specifically for children with food intolerances. He gave me a sample, but said not to switch him to it just yet because he wanted to give the Zantac a chance to work in his system to see if things got better. What he was most concerned about were the black stools, which could indicate blood in his stomach. He told me to take stool samples, return them to the lab, and when he received the results we would come back together and go from there.

 After the doctor we returned home, and I called my mom and my husband to let them know what the doctor said. Everyone in my family was waiting on the news, hoping we'd have some magical answer that would make our little boy all better. Not yet. Blake cried and screamed the entire afternoon and into the evening, with little to no break. I tried everything-walking, bouncing, singing, cuddling, swaddling, feeding, diaper change. I tried laying him down thinking maybe he just wanted to be left alone. Nothing. Exhaustion was kicking in on my part-mental, physical. It's one thing to hear your child cry, but hearing screaming for hours just takes it to a whole other level. At one point I was holding him, doing everything I knew to do and finally...as he screamed, I let out a huge blood curdling-right-out-of-a-horror-movie scream. I was certain one of my neighbors was going to call the cops. I didn't care. I screamed again. I pulled at my hair. Then, I cried. Blake continued to cry. I cried some more. He didn't stop. When my husband came home I was at my wits end. I consider myself to be a patient person. I had been patient with him for weeks, listening to his cries and not really being impacted by them. But I really couldn't take it anymore. My patience was thinning, and I had about 1% of it left.

 This brings us to today... I was able to gather the stool sample requested by the doctor. Brought it back into the doctor's office to be tested by them just as I was instructed, only to be told they don't test in the office anymore and that I needed to drop off the sample to Quest Diagnostics. Thankfully, there's a Quest in the same shopping center as the pediatrician. Took Blake out of the car, walked in, signed in, spoke to a tech who told me that the sample needed to go to Lab Corps, not Quest. I loaded Blake back into the car and drove to Lab Corps. At this point, Blake had woken up and started to cry just as I was entering the building. I sat in the waiting room, only to be called back, then told that the sample collection kit the doctor's office gave me was outdated and they no longer accepted it. She packed a new kit for me and told me I had to recollect his sample using the new kit because the old one was no longer any good. I knew this mishap wasn't her fault. I blamed it on a miscommunication between Lab Corps and my doctor's office. I remained polite, grabbed my crying child, and walked to my car. I loaded him in, sat in the parking lot, and stared off into space. I wanted to slam my head on my steering wheel, as my little one screamed in my ear in the backseat. I took a few deep breaths, and called his doctor's office to speak with the triage nurse. I needed help. I wanted to see the doctor again. I wanted something, anything to be done. The triage nurse was very friendly, and even ignored Blake in the background--even though we had to yell to each other to hear. I told her I had reached my frustration point (Yeah, remember the 1% I had left? It was gone. I was officially at 0%.) I also told her about the outdated stool kit, and she apologized. (Still I have to start over on the darn thing.) She gave my number to Dr. S to call me back.
 From the parking lot I drove to my mom's house. I needed some relief. A break. A nap. I updated her on the latest. She watched Blake for me as I laid down in her bed. I kept the phone right beside me in case Dr. S called me. I didn't get much rest because I could still hear Blake crying in the house. I got out of bed an hour later and checked my phone, only to see that I had a missed call from the doctor. My phone didn't even ring! I called him back, but he was with a patient. After a few games of phone tag we were finally able to reach one another. He talked to me for 15 minutes. I cried on the phone. He told me to go ahead and start giving Blake the Nutramigen formula, because if his suspicions were correct then he was experiencing a food allergy. (The reason he didn't switch me the day before was because he wanted to give the Zantac an opportunity to work with the GERD, but with the screaming worsening he said it was worth a try to see if there was any relief.) He told me that it takes about two weeks for the old food to completely exit his system, however, if I didn't see ANY improvement within a few days to return to the office. No improvement in a few days would mean something more serious is going on. He told me to hurry to try to get the stool sample because that would really tell him a lot, especially if there's blood in his stool. He apologized to me, saying he should've paid closer attention the day before. He said that if I needed anything at all, or even just someone to talk to, to call him back at any time. He confirmed that he has colic. (Yeah, no kidding!) "You're not alone in this", he said. "I promise we will find out what's going on with Blake. Hang in there!" I hung up the phone and thanked God for such a wonderful and understanding doctor.

 Blake is asleep now. Nights are never an issue. He cried for hours though before he finally went to sleep tonight. So far he has had the Nutramigen for three feedings, though he's still only eating half or 1/4 of his bottle.
 I know it's too soon to notice anything. I'm looking forward to tomorrow, and the next day, and the next, and the next...just to get closer to resolving this. For him. For me. The last thing I want for him is to be in pain. I also know that my sanity is at stake here. I don't want to sound selfish and make this about me, because ultimately he's the victim. He's the uncomfortable one. But, this is incredibly hard for me too. An inconsolable child is exhausting, and I guess it would be difficult for anyone who hasn't experienced this to understand. Having a newborn is tiring in itself. Add colic, GERD, and whatever else is going on with him, and it gives a new meaning to the word "tired." Sometimes I think exhaustion doesn't explain it. I'm so passed the point of exhaustion that I don't even have a word for it. I just want my baby to be okay, free of pain, and on his way to healthy.
Meanwhile, I'll take your prayers please!


3 comments:

  1. I downloaded a book call "colic solved" by Bryan Vartabedian lots of good info. She has been sleeping in a rock and sleep by fisher price and had to switch her medication, zantac was doing nothing. Get support and help, it is hard but it does get better! my baby still has it, but not so much screaming as she his getting older (almost 6 monrhs) I can relate to soooo much. Happy to talk if you would like.

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  2. If it helps at all both Sierra and I had issues with milk and formulas. We both ended up on goats milk. :-) There is a common blood line thru our mom. I know there is tension but our mom might have family history that might help. I know you're getting info from all over but it just might be part of the puzzle. Blake's struggles sound so similar to stories told of me as an infant. Sierra, being so small and premature, nearly died before the connection was made. Please talk to her, or have Mike ask. I'm praying for you all. We love you so much!

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  3. Big Hugs Brittney! I love you, you are a great Mom and you will both make it through this!

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