Friday, February 5, 2010

NICU Anxiety

(For some reason, Blogger isn't letting me upload photos today {I get a lot of HTML jibberish}, so this is one of the rare posts of mine without a photo.)

I'm stressing a bit right now, something that seems to hit me randomly as the weeks and months go on and on in the NICU. Today I went to the usual 11:00 feeding for Jack (he's learning to bottle feed), and a new nurse, Dani, was there with one of the regulars, Jane. Both are wonderful nurses and very sweet people, and greeted me with the usual smiles. I walked up to his crib, and Dani was performing a check on his lungs/heart/tummy with the stethoscope. She looked puzzled and asked Jane if she heard a murmur. I was surprised, since Jack's last echocardiogram was clean, and he's considered problem free in the cardiac department. Jane took a listen and confirmed the diagnosis of a murmur. I suddenly found myself crying, and ducked out of the way to get a kleenex. It happened so fast that they didn't even know I was crying, until I stepped back near the crib and they saw my face. Lots of consolation and soothing began, which made me cry even harder. Eventually I settled down, and was chatting and smiling with them, although I was still surprised at the sudden flow of tears, seemingly out of nowhere.

Then the speech therapist, Maha, came in, who works with Jack to teach him to feed. I sat down with Jack and started giving him a bottle. He was slow to start, and was not breathing well as he drank from the bottle. He started destatting quite a bit, and had some bradys (bradycardia, or heartrate dips), and again, the tears started flowing. The speech therapist didn't realize I was crying either, until I had to pass her the bottle so I could blow my nose and wipe my eyes. She was very nice and totally cool about my crying, but I was really embarrassed. The feeding continued, and I eventually got it together, as did Jack. We finished on a good note, with some loud burps from Jack and smiles too. But it was later passed along to one of Jack's doctors in the NICU that I had "showed anxiety" regarding his heart murmur. The doctor later stopped by to review Jack's day and listen to my concerns. I was a bit sheepish when he mentioned my "concern," but he was really nice about it, as everyone has been during the last 3+ months.

I'm not sure why I'm so embarrassed to cry while I'm there. I have no problem doing it in the car, or at home, or in front of Pete (he's really used to it by now). I'm sure I'm not the first person to cry in the NICU, and I'm definitely not the weepiest person ever. But for some reason I just have days where the anxiety is bubbling closer to the surface than it usually is, and I have a harder time controlling the emotions. I realized as I was driving home that I am under 24/7 stress, and have been for months now. That sort of stress and pressure will get to anyone, especially since it concerns my child, my baby, who has suffered since he was born (and even before that). I know he's doing really well right now, and his homecoming is on the horizon. Yet I still can't fully relax. Besides the constant stress of Jack's health on any given day (or even hour), there are the mounting medical bills (even with our good insurance), the reality that I'm still laid off and looking for work, with only occasional freelance jobs, the usual (growing) financial worries, worries about my own health and stamina, such things as staying in contact with friends and family, and of course the stress of daily life on top of all that.

I wish I could relax and let it all out, and feel free to cry at will. I've never been one of those people, and never will be, I think. I can distract myself from my own reality with thoughts about my upcoming baby shower and my registries, our furry children's antics (as annoying as they can be sometimes), my artistic pursuits, which have been put on hold for the last 3 months, and even basic things like going to a movie or playing with my new Wii. Pete is wonderful and supportive as always, but in a way, I'm burdened with the job of worrying for Jack. Pete does worry, don't get me wrong. But he is able to accept what is going on around him, and figures he won't waste time thinking about things until they're a real problem. He's also not involved with the daily care of Jack as much as I am, the medical bills, the social workers, the nurses and doctors (although he does visit Jack with me for several hours a day), and everything else going on behind the scenes. I am also still trying to get over what pregnancy and birth has done to my body, and am physically reminded on a continuous basis how traumatic Jack's birth and life has been for me so far, despite how wonderful and amazing he is.

Right now, my only consolation is to talk to others about it, blog about it, join micropreemie mom support groups, and to read about others' experiences, to know that I'm not alone, and to get questions and concerns answered. In the end, it's something I will continue to endure because I have received such a blessing and a gift in the form of my son.


Char said...

oh honey - i can't even imagine how difficult this is. i admire how very brave you have been and strong. and yes, even when you cry you are strong.

i continue to pray for you all. wish i could give you the biggest of hugs.

kendalee said...

Oh Chris, my heart goes out to you. I have no idea what it's like to be managing the situation you're in but I so relate to this one aspect of it - I am always mortified if someone sees me crying (and always prided myself on being able to control it) and although rationally I know it's nothing to be ashamed of or embarrassed by, emotionally I battle with it. It's something that slowly I am coming to terms with though as in recent years I've found myself crying at extremely inopportune times, uncontrollably (like in a train carriage full of business-suited men, trapped, with nowhere to escape to) sparked by nothing more than, for example, a song on my iPod that reminds me of a loss that on some deep level I am clearly not yet over. I guess what I'm saying is I've learnt that sometimes our emotions really are just too big to be contained and they have to overflow in some way. Take comfort when it's there to be taken (those nurses and doctors sound amazing and wouldn't do what they do if they were not caring souls so a few tears will not faze them) and know that you are not alone. And be gentle with yourself - you are dealing with huge challenges, bravely and lovingly and with enormous strength and it's entirely understandable that sometimes tears will flow. If I were you, I'd be more concerned if that wasn't happening!

I've just caught up with the past couple of weeks and I am so thrilled to see how beautifully Jack's growing and so excited for you all that his homecoming is on the horizon... Despite all that you are facing, your joy in him shines through and that's lovely to see :)

Sorry for the book-long comment!

avant garde said...

chris, you are not only allowed to have melt downs, i would, and probably most people would think it abnormal if you didn't. isn't amazing how strong you find yourself for your children? i'm not sure where we go to dig so deep sometimes, or how we find it, but it is our exquisite female instinct to be strong.

you have to stay strong for him, but at the same time don't be afraid to be a woman, a human and to have days where it all starts closing in like that. sometimes it's the little things that send us over the edge. but not for long. i cannot understand the situation of having a preemie, but i can understand post pregnancy (body changes, emotional changes) and the newness and unknown-ness that comes with being a mom, sort of all of the sudden :) the most important thing i can advise is that all of the things that you want to "fix" or do or complete or start, will all come. seriously they will. once jack is home you can resume a bit of normality and all of those things will come. and you know what? if one or two things on your list have to wait...then so be it. they too will have their day. i wanted to fix everything, do everything at once after i had ethan and you just can't. but time goes soooooo fast, remember that.

thinking of you and keep venting through posting. hopefully it will help :)

Chris said...

Thanks so much for your support. It means a lot to me that you guys took the time to write words of encouragement, and check often on how I'm doing. It makes this all so much easier :)