Bilirubin, Acid Reflux, Pyloric Stenosis ...

Honor has been one healthy baby from the moment she was in my tummy to present time. However we have had our fair share of concerns with her in her three months of age even though we've never spoken publicly about them. She was born three weeks early as you all know, but all of her vitals showed she was as healthy as ever. Though her vitals and testing all came back normal, she did test a little high on her bilirubin just hours before they discharged us. So, just to be on the safe side, they scheduled a follow up doctor’s appointment the following day to check on it again. The unfortunate thing about checking her bilirubin levels meant that she had to get blood drawn instead of the forehead test they do at the hospital. After those results came back even higher, we were sent home to continue her feedings as normal and we needed to come back again the next day for more testing, just to see if her bilirubin count would go down on its own. Unfortunately, when we went back, it still showed no signs of change. 

So we spent the next four days doing the same doctors appointments and blood testing... Since Honor's body wasn't bringing the count down on her own, her pediatrician finally ended up ordering us a at-home bilirubin light for her to stay to break up the bilirubin quicker. I then started to produce a substantial amount of milk that I was pumping around the clock and bottle-feeding to her since we still couldn't get her to latch properly.

Breastfeeding in the beginning was a challenge in itself because she wasn't latching to the breast, and I hadn't began producing enough milk yet, so she wasn't getting adequate nutrition which resulted in her body weight drastically decreasing. I remember having a major breakdown and outburst of tears when we had came home after that appointment because I felt like a failure as a mother to her. I felt like it was my fault she had lost so much weight that also contributed to her jaundice, and I couldn't help but look at her in tears. Telling her how sorry I was and that I wished I could do better and make it all go away for her to be 100% healthy...

For those of you who don't know, a high bilirubin count in babies actually makes them to be positive for jaundice.  Jaundice is a medical condition with yellowing of the skin or whites of the eyes, arising from excess of the pigment bilirubin and typically caused by obstruction of the bile duct, by liver disease, or by excessive breakdown of red blood cells. It requires babies to lay under or on a blue light for hours at a time to breakup that pigment. 

Honor was extremely yellow in her skin and in the whites of her eyes, it was only obvious she needed to be under that bilirubin light. Fortunately enough, those were the only two "symptoms" she had since she had normal wet and dirty diaper outputs.

After my milk supply started picking up, and her being on the blue light for several days; everything started to get better. Bilirubin levels went down as her weight went up. Thank you Jesus!

After a few weeks went by and her eating habits were at a good steady pace, we had another new issue arise that started to concern me. I started noticing that after every one of Honor's feedings she began spitting up her milk. Now I know that every baby spits up and they eventually grow out of it, but she was spitting up literally all the time - and that just didn't seem normal to me. Adding onto the spitting up, she started having massive crying spells to where she seemed like she was in pain. I researched everything from her being colic to extreme gas, to acid reflux, sensitive stomach, you name it. I tried different gas relieving positions, laying her at an angle to help the colic and acid reflux, and nothing was working to help her feel comfortable again. So, after listening to my intuition, I scheduled yet ANOTHER doctors appointment to get their advice on what I should do... Well, there wasn't much to do since I already "guessed" her diagnosis and was already trying everything they recommended... only thing that changed was me adding in mylicon gas drops to her milk and giving her baby Zantac to help with the acid reflux three times a day. 

After continuing that for a few weeks, she seemed to do better, but not completely. She wasn't crying uncontrollably anymore which was good, but she was still spitting up more than a usual amount. So back to her pediatrician we went... After her appointment, her pedi scheduled an ultrasound to be done on her stomach to see what was going on in there and what could be causing her to constantly spit up. This was the "last resort" decision since everything else didn't work. 

The reason for her pedi ordering an ultrasound was to internally check and see if Honor had what they called Pyloric Stenosis. 

Pyloric stenosis is a narrowing of the pylorus, the opening from the stomach into the small intestine. This is when the stomach muscle becomes to thick and doesn't relax enough to let food pass through into the intestines which can then cause excess food sitting in the stomach to come back up - known as acid reflux. Pyloric Stenosis is mostly common in little boys, and on rare occasions little girls get it to. 

Babies usually outgrow Pyloric Stenosis (PS) as they get older, however in extreme cases (when projectile vomiting occurs) surgery is needed to make an incision/cut in that muscle opening from the stomach to the intestines to force it to relax. That procedure completely "cures" PS, and can never return again. 

So I take Honor to her ultrasound appointment not knowing what to really expect... There were two ultrasound technicians in the room and as they were doing the ultrasound they kept commenting on what they saw back and forth. The entire time I am hearing things like "do you see that??!", "hmm you see how big that is??!" ... I'm just sitting there trying my best to keep my cool and patience, and I politely asked what it is they kept referring to and all they said to me was "oh I cant tell you, you'll have to wait to hear from the radiologist after he takes a look at the images.." You have no idea how pissed off that made! I was livid, furious, so angry I wanted to curse them out and tell them they should of kept their big mouths shut then of they can't "disclose" what they see... Like why would you say all of these horrible things to make me worry and have my mind race like crazy if you can't say anything?!!! OMG, I can't express how mad I was!

So once they finished getting all of the images they needed, they stepped out of the room to go talk to the radiologist. They were speaking somewhat loud, so you bet your a** I did my best to eavesdrop, but I only got bits and pieces. I waited frantically in the ultrasound room for about 15minutes and being a worry-wart of course... Finally, one of the techs came back in the room and told me that they were still analyzing the images and they were waiting to get a hold of the pediatrician on duty at the hospital since her normal pedi was unable to be contacted. 

After waiting another 20 minutes, the pediatrician on duty came down and sat me down to go over what they were all seeing... Little did I know, I was about to receive the worst news ever...

As I held Honor in my arms while she slept, the pedi explained to me that Honor had Pyloric Stenosis. She drew out a diagram of what it all meant and looked like so I could gain the best understanding of the "diagnosis". Next she explained to me that the only way to correct this medical condition was through surgery... My heart immediately dropped, and I remember looking down at her sleeping so peacefully and breaking out into tears as the pedi continued to explain things. I remember apologizing to her for crying uncontrollably, and she just stopped to console me and tell me that everything was going to be ok. I couldn't wrap my mind around every thing as it was all happening so fast. I didn't know what to say, do, nothing. I was just at a complete loss and felt so helpless. (I can't help but tear up writing this because I still remember that feeling as if it happened yesterday.) 

After the pedi was done explaining what was needed to be done, she told me that they were getting us a room ready for Honor to be admitted into the hospital right away, and to begin preparing her for surgery that was going to take place the next day. I tried my best to keep my composure throughout all of this while I made phone calls and waited. Since Sean was at work, I couldn't wrap my head around how I was about to tell him everything... He knew she had the ultrasound appointment, but had no clue on the phone call he was about to receive from me. So I called Sean and told him everything, did my best to explain the information that was given to me. I remember hearing his worried voice, which broke my heart all over again, and he said he would be on his way to the hospital shortly. 

Once I hung up the phone, one of the nurses came down to escort us to her room. Luckily we were the only ones assigned to that room. I laid Honor on the hospital bed, and shortly after the pediatric surgeon on duty came in to talk to me. He explained to me how the surgery usually goes, a small incision in the stomach, only about an hour long procedure, etc etc. But after he was done explaining the surgery process he told me that based on the ultrasound images he reviewed, he wasn't convinced that it was serious enough to even undergo the procedure. That right there was like a huge relief to hear! He said that the measurements of PS was borderline "bad", but not to the point where he would want to operate. He told me that he wanted to review the ultrasound again, and wanted to do a follow up ultrasound the next morning to see if it got any worse; then surgery would be needed. In the meantime he wanted her to be put on an IV overnight, and we weren't allowed to feed her for the next 12 hours. This was to help flush out her system, keeping her hydrated, and to see if any reflux would happen without feedings.

While I waited for the nurse to come back in to get her all hooked up, Sean finally made it to the room. I remember seeing him walk in with his eyes filled with tears and him reaching to hold his baby. That was the first time I had ever really seen him emotional like that. I tried my hardest to keep it together, especially since I had already had my crying session... But it was just so heartfelt to see. 

I began explaining to him everything the pedi surgeon and doctor had told me and that there was a good possibility that she wouldn't have to get surgery… Contingent upon the next ultrasound. So the nurse came back and told me I could go with them to place the IV in Honor and draw blood, and I agreed (probably not the smartest decision, but I needed to be with my baby). It took three different nurses and THREE different needles to find a good vein to run the IV through... It was the worst feeling standing there hearing Honor cry from the sting of each needle and how uncomfortable she was. I stood there hopeless and angry, and finally the last nurse was able to run the IV through a vein in her foot. My poor little pumpkin was just so tired of all the different things going on with her, and who could blame her. 

So we bring her back into her assigned room and they get all of the IV fluids going, and I get Honor settled comfortably in my arms so she could sleep. By this time it was about 7pm and since both Sean and I didn't have anything prepared to stay over night, he made a trip home to grab us blankets, phone chargers, warm clothes to sleep in and something to eat. 

Since we were the only ones assigned to the room we were in, luckily the nurse allowed both Sean and I to sleep there with Honor. Normally they only allow one parent to stay with the babies and the other must stay in the parent’s waiting room down the hall. By this time, it was now about 9:30pm and Honor was fast asleep in my arms (still) and both Sean and I were exhausted.... Granted, it's been one hell of an eventful day. 

I tried laying Honor in the hospital bed to sleep so I could get some sleep as well, but she just was so uncomfortable. Every time she would move her legs and feet,  she ended up hitting the IV and would wake up screaming and crying because it stung.  

So after an extremely long and tiring night (for me, since mommies usually never get any rest) it was finally 8am the next day and it was time for the follow up ultrasound! A nurse from ultrasound came up to get us and wheeled us down in a wheelchair (we could of easily walked ourselves down while I held Honor, but their policy says it had to be done otherwise, so over the top in my opinion... But oh well). So the ultrasound tech took some more image stills and video of her stomach. They also had her drink some sugar water to watch how her stomach worked (in real time) to determine whether or not enough liquid that she was taking in was passing like normal. After the radiologist reviewed the images he concluded everything looked fine and that it was highly likely she wouldn't need the surgery. But of course, we had to wait for the final ok from the pediatrician on duty. 

So we are escorted back upstairs and we waited for about 15 min till the pedi came in. He told us that Honor was just fine and didn't need surgery after all... Although the PS measurements were borderline "extreme", they weren't enough to convince the doctors she needed surgery, but she did get prescribed a stronger acid reflux medication. Once we heard that, Sean and I were so relieved!! You have no idea what that meant to us! 

So they went ahead to prepare the discharge paperwork for us and we gathered all of our things in a matter of seconds!  Then Sean went down to the pharmacy to fill her prescription. 

To know that my little caterpillar was ok, and didn't need to "go under" was a huge blessing from god. I couldn't imagine if she did need to get surgery how I'd handle it all... My poor little thing is barely three months old and has experienced so much - medical wise in her short living life. But to now know that she has outgrown having severe acid reflux couldn't make me a happier mom. 

Baby girl is one heck of a strong little lady, and boy has she been a handful since day one! ...But I wouldn't trade it for anything in the world! xoxo