There is no question that becoming a mom changed my life. I can already hardly remember a time without Emerson and I would never want to go back to before his existence. But being a mom to a baby as sick as Emerson is hella different then being a mom to a healthy baby.
And I am not saying it is harder to be a mom to a sick baby than it is to a healthy baby. In some ways, it has been easier with Emerson than it will be with our next child. For instance, we are not getting up in the middle of the night to feed Emerson, we don’t have to change diapers (we do when the nurse lets us). Since we are in the hospital we don’t have all the little scares like jaundice, colic, SIDS, etc. put on us, the hospital staff is right there to discuss any problems Emerson is having.
It is significantly different though. And it is hard. It is hard not having answers or a book with the answers. It is hard to hear a doctor tell you that your child narrowly avoided death (I firmly believe Emerson is here due to the number of prayers said for him and intercession on his behalf by the many Saints and Angels those prayers invoke). It is hard to see your child, so small, on such a large bed and to have multiple lines going into his body. It is hard to see the number of machine’s working to keep him alive.
Hard does not even begin to describe it really. I don’t know how to articulate the feelings of dread (worse than anything I’ve ever felt) when they wheel Emerson back to the OR for a procedure or a surgery. Every risk that could happen creeps into your mind and you have to fight to think positive. During his last procedure, the broviac line placement, I couldn’t stop myself from wondering how steady the surgeon’s hands were since he would cut the skin directly above his jugular– cut too deep and, to put it mildly, you have a serious problem on your hands. Not knowing the surgeon made it harder for me to trust the surgeon and harder to give consent than with a surgeon I know.
It is terrible to watch your baby cry and not hear a sound because there is a tube placed between his vocal cords helping him breathe. It is worse being unable to pick your crying child up to comfort him; the only course to soothe your child is with hushes and soft touches and when that fails your nurse, left with no other option, gives him more narcotics to ease his discomfort.
I hate having knowledge of narcotics…and withdrawal. I hate knowing how the chemicals affect Emerson’s brain and body and I hate knowing how the absence of the chemicals affects his body. Even without the knowledge, watching Emerson when he is heavily sedated is painful and watching him on withdrawal is even worse.
I do not enjoy my suddenly increased knowledge of medicine and human anatomy. I dislike knowing doctor’s jargon because it is about my son’s health. I hate that we’ve been here long enough to know all the safety codes.
I hate making progress only to take the same number of steps backwards. I hate how easily I despair and how quickly I jump to the worst case scenario (it’s my personality; I need to prepare for the worst). I wish I was better at all of this, because it is hard and I struggle. I hate that I got a job and, too soon, I have to leave Emerson. What if I miss something?
But we are getting closer. I know it. And we keep celebrating the small things: changing diapers, changing poopy diapers, changing poopy diapers that happened without a suppository, giving him a sponge bath, putting on his splint, moving his legs, giving him massages, holding his hand, and climbing up in bed with him. We celebrate that his BUN dropped to 32 when the high-end of normal is 15 because 32 is the lowest it’s ever been. And you celebrate 40 and 50 and 60 because it was sitting in the 70s and 80s for too long. You know you’re witnessing a miracle when your 5lb 4oz baby who just had open heart surgery survives, simultaneously, renal failure and an “abdominal event” (essentially intestinal failure). We celebrate that he started NG feedings at 2mL an hour and we are so happy to be at 7mL an hour (even if it is three weeks after starting the feedings). We celebrate each time a medicine is taken down and we need one less pump (we are down to six!). We celebrate when cultures come back negative, when white blood cell counts are low, and when his bilirubin is normal. And we keep trying and moving forward.
Today was a hard day for me. Emerson’s stomach seems more distended. He is still sore from the Broviac placement. And he is still going through withdrawal. It’s harder to see him cry today, because sometimes comforting doesn’t help and all I can do is not enough. And, honestly, it’s hard to even write this and express these negative emotions. People tell me that I can feel whatever I want– it’s okay if I am angry, or sad or disheartened or hopeless. Yet the same people who tell me this also immediately tell me “not to think so negatively” when I express these thoughts (and sometimes I have very dark thoughts). But it really is okay for me to feel everything I feel and when I hold it in it just makes it harder for me and Matt. Since writing it cathartic for me, I am going to write. And if that means writing some things that aren’t so fun for some readers, then stop reading it. I am not blogging for the joy of my audience, I am blogging for myself. My narcissistic-in-constant-need-of-approval-self. And I would write this all in my diary but guess what, it’s packed away in our “pool house” and don’t want to get another one because that would drive the ocd/anal retentive part of me insane. So personal crazy thoughts get to be shared with the public.
Anyway, I have a special secret. Wanna hear it? I mean, if you made it this far I feel like you deserve to hear it. Matt and I asked if we could hold Emerson while he is still on the vent (because we were under the impression that we could not). Our nurse said sure. That it was up to the comfort of the nurse on duty. So that pretty much has me peeing my pants.