A few weeks ago River had an impedence probe test done to measure his acid reflux. We went inpatient for 30 hours and he puked as per normal during it. His morning feed in fact he puked up 210 mL's of 240! Honestly I was so relieved he was throwing up during the test because it meant FINALLY we would get him some help. Surely this test was going to have a purpose and his doctor would finally be willing to give us some help. So when the doctor's office called us a week later to let me know his results were "within normal range" and his GERD is considered "controlled" by meds. I sat stunned when the nurse told me that and I guess it was an awkward silence for her because she suddenly goes, "SO THAT'S GREAT!" Well... Mama lost it at that point. I said, "Actually it's not great. He throws up all day long and in the morning's he is throwing up anywhere from 5-7 ounces of an 8 ounce feed... so no, it's not GREAT. And if his results are "normal" ya'll need to find out why he is throwing up ALL THE TIME." Silence. The nurse then stammered she'd have to talk to the doctor and give me a call back. I said that'd be great, got off the phone, and proceeded to cry my eyes out. I had put all my hope in this test finally being the answer and the kick the DR needed to take us seriously about the vomiting and weight loss (he'd only gained 2 ounces in over 2 months) and now they weren't going to do anything for us. That was on a Tuesday...by Friday NO ONE had called us back so that morning I called our pediatrician and River's two other specialists at Children's. At this point I thought even if they can't help us (since it wasn't their specialty or what they were seeing River for) there would at least be documentation of all the help I was trying to get and I knew my ped would also call the GI doc on our behalf. Someone from all of those offices called me back within an hour of my leaving a message and offered what little help they could. One of our other nurses even practically demanded I have the GI attending on call paged because she felt it was totally unacceptable the way this WASN'T being handled and the way we were being treated. Finally, Friday afternoon a nurse from our GI office called and said the Dr wanted to start River on a new med. I thought, "Hallelujah!" and then she told me the new med... which was one they had tried to treat his reflux with in the NICU and he cried for 3 days straight when they put him on it (without speaking to us first I might add). I told her we were not comfortable trying that med again because of his reaction the last time. When he came off it in the NICU he was fine within 12 hours so we know it was definitely the med and his nurses also noticed the change in him so it wasn't just us. Not to mention he can't even take the med with another med he is on. She said she didn't know he was on that med and I reminded her it was in his chart and he'd been on it since he was 2 months old. She said, "Well I don't know what to tell you to do. I can talk to the doctor Monday and call you back." I said, "How about you get us an appointment to come in please?" So we made an appointment for the next Thursday.
Meanwhile I decided I'd HAD IT with all the puking and since it didn't look like anyone was going to be helping us I made the decision to cut the volume of River's feeds back. I went from 8 ounces to 4 ounces in the mornings since he threw up worst then and the rest of the day we went from 8 ounces every 3 hours to 6 ounces every 3 hours. I figured our GI office was going to have a fit and say that wasn't enough to keep him hydrated, BUT if he could hold it down then he'd be getting much more than he was when he was puking up over half his feeds. I didn't noticed a difference over the weekend, but by about day 4 the puking had drastically decreased. We went in for our appointment and lo and behold we'd actually gained weight! Even still because of all the throwing up and lack of weight gain River earned the diagnosis of failure to thrive. (As a side note the doctor made a comment that my cutting his feeds back hadn't helped him gain weight, it was just a coincidence. How nice, right? WHATEVER!) Of course, as I imagined they said he wasn't getting enough volume. I reminded them he was having plenty of wet diapers (anywhere from 5-8 a day) and crying actual tears so I knew he wasn't dehydrated.) They asked us to start a night drip and I reluctantly agreed. (A night drip is basically we'd get a pump and we'd set it up where he'd get a slow rate of milk all night long while he slept.) So we got our settings and we headed out to pick up our new medical equipment for the night drip. I held it together fine until I started doing my training to learn how to do the night drip. I'd been so happy that we'd managed to avoid night drips this long because it allowed us to hold onto a semblance of "normal" for River...but I pushed back that feeling and tried to ignore it. We'd had plans to go out of town for the weekend so we decided to start the night drip when we got back home.
We started last night. River went to sleep around 9:30 and then I hooked him up to start his night drip at 11. I set it up and hopped in the bed myself not really giving much thought to it. Within a few minutes the pump was alarming and I went back in to check on things. I couldn't figure out why it was alarming for a couple of minutes and I guess that gave my brain time to process things. I finally realized I'd forgotten to unclamp the extension on his g tube and that's why it was alarming. I unclamped, restarted the drip, and by gosh- out of nowhere I just lost it.
What I've learned from life with River is that's it okay to not be okay all the time. We have friends who have to live on this earth without their precious children. We have NICU buddies who went through EVERYTHING with us, who we sat and cried with, who we pumped for our children together as we discussed their futures like they weren't hanging in the balance.... so I GET IT. I know how blessed I am, how lucky I am to have my son in my arms. I don't understand why he got to live and other's didn't... and I still struggle with guilt that he made it. But knowing that... and being grateful for his life... well in the middle of the night sometimes that knowledge doesn't make it any easier to be dealing with things that you never foresaw for your baby. It doesn't take away the sting of a life that isn't quite what you imagined. Am I grateful he's here? Would I do the hardest day every day of my life if I meant he was in my arms? Yes, I absolutely would... but it's still HARD. So I let myself feel that last night. I curled up in bed with my husband's arms around me and God in my heart. I think He understands and I'm grateful for a God that sometimes allows me to just FEEL what I need to feel. Thank God He holds everything.
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