Stop this train I wanna get on

Stop this train I wanna get on...

Written Nov 20, 2011 10:23am by Amber Gannon Medina

This has been another difficult week, although the idea of difficult has become very subjective to me. There is no other way to describe Mira’s condition other than she is doing OK. Just OK.  And that’s not a bad thing, but I have to admit I wish I could instead report something along the lines of-now that Mira’s chest is closed she is well on her way to recovery and is doing wonderfully! However, with Mira’s journey nothing has been quite that black and white.

Mira had her chest closed this past Monday. The surgeon did report it was very tight getting her chest closed but the procedure itself was uneventful and did not take long. However, Mira’s body did not take very well to having a closed chest. All of Monday and most of Tuesday doctors (and us) were not sure whether she could withstand having the added pressure of a closed chest. Her renal numbers were fairly awful and her blood gases were coming back borerline concerning. We felt like the whole day was filled with a horrible suspenseful waiting –would they allow her to stay closed or have to reopen her chest (and with that option we felt like it would be such a HUGE step backward). Finally Tuesday evening, after some manipulations (mostly involving upping her Epinephrine and her ventilator) she started doing much much better. What a relief! Her renals went into the 60’s, her blood gases started coming back normal and they were able to keep her off her paralytic.

Yet, since we are getting to know Mira’s M-O things are not always as they appear! W e spent yesterday with her and being the Mira we know (and LOVE), she is taking baby steps through this whole thing. Her renal numbers continue to dip down into the 40’s (and the 20’s and 30’s when she is angry or upset), she is even more swollen and leaky (which among other scary things, could mean an infection) and her chest tube output has actually gone up from what is was right after her chest closure. She is very sensitive and her numbers will show if she is bothered by noise, if she is up and moving or if she is scared or angry. This lady turns quite the shade of purple when she is mad-if I didn’t feel so badly for her I would laugh because its so cute! Needless to say, when I am with her I try to keep her calm and sleepy and very happy! I don’t have many options available to me for calming her, but she seems to like stroking her head while talking to her, lots of shushing and a little rocking (which you can do in a very limited way by putting your hand under her booty and jiggling her-its almost like holding her…Almost, but not quite).

Once Mira had her chest closed, I found that people started talking to us about what her next steps would be. At first I was excited to think about all the leaps and bounds she could take now that she had a closed chest. But after this week, I see that Mira is not one to leap and bound. Mira might take her time through this entire process, and that means weeks and weeks of these tiny steps forward and then sitting in one place for awhile, waiting it out.

The next few weeks the doctors and nurses will be working on mostly weaning Mira off her support and introducing her to feeding. She will need to be weaned off a lot of different meds, including morphine, epinephrine, sufentanil, numerous antibiotics, and a lot more I can’t pronounce or remember (don’t worry, I have a pile of packets of all her drugs so I can remember when I need to!) I think its funny  (funny because I have a sick sense of humour at this point!) and very sad that Mira will most likely have to be put on methadone in order to get her off the morphine she’s been on for over a month now. So much for us having a natural birth-we made up for it with all of these medications.

The ventilator is tricky because Mira is such a leaky kid. Once a baby becomes leaky, (and this is an interpretation of a doctor’s explanation, so take it with a grain of salt) her insides become saturated, including her lungs. So Mira has what is called “wet lungs” and she will have to be weaned off her ventilator very slowly.  She has had the ventilator’s support for so long, we are being getting her off of it will be a long process.

The eating. We were warned about this in the beginning. We were told if anything keeps you in the hospital a long time it is the feeding (well, ha ha to that one because there is not only ONE thing that has kept us in the hospital! They were wrong there). Apparently, between working on the coordination of feeding and getting her gut used to food, getting Mira eating enough to put weight on is tricky and can take a couple of weeks as well.

There is something to be said about being in the middle of your daughter fighting for her life. You enter a survival mode, life narrows and becomes very focused, you don’t feel tired because you are living on adrenaline, and your life gets put on hold. And once her life is no longer in danger, you just….wake up. You realize that this is your LIFE. Your life. You wonder how you can be happy in this new life when your daughter will be in the hospital for another few weeks and maybe even months. You stop living on adrenaline, which means you are exhausted and depleted. You also realize you have a very very long way to go....

The worst part of this for me is that I still don’t feel like a mom. Sometimes when I am in Target I pass the baby section and see women buying their babies clothes and I think-I am a mom too, I could do that. I could shop along with these women and buy my daughter clothes-I could try to feel normal for a minute. But I would bring those clothes home and I would pack them away because my daughter can’t wear clothes-she is hooked up to too many tubes and lines for her to wear clothes. Maybe that sounds shallow, but there are so many other examples of how I don’t feel like a mom. I can’t feed my daughter, I can’t hold her, I can’t show her the sun, I can’t take walks with her, I can’t breastfeed her, I can’t take naps with her, sometimes I can’t talk to her when she is really sick, I can’t put her in her car seat or stroller, I can’t rock her to sleep, I can’t dress her, I can’t changer her diaper, I can’t hear her cry, I can’t put moisturizer on her dry skin, I can’t give her a bath, I can’t watch her discover new things, I can’t take her home.

Maybe I should be thinking of all the things I CAN do with her and most of the time that is what I do. Yet, even doing that does not make me feel like a mom, and then I get annoyingly existential and try to figure out what being a mom really means to me. After a lot of thought, I think I’ve narrowed my meaning of being a mom down to something very simple.  For me, being a mom means being there for your children no matter the situation. This situation sucks, it stinks, I hate it. And yet, I will be there every day for Mira, in the best way I can. It doesn’t feel like much, and it doesn’t include dressing or feeding or changing her right now, but it means being there for her in the way she needs. I can't say it enough-Mira, you keep teaching me how to be a better and stronger person every day.