Anya’s vent settings were decreased further today. Some of
her medicines were stopped. She has been drowsy the past couple of days, but
does wake up if you bother her. I guess she is tired doing more work for
herself!
I have never asked many questions about this stage of
recovery, I have always had a general idea of what would be going on but not a
specific one. Even knowing ahead of time that it was a long process has not
prepared me for the emotions of the past few days. I have had pretty much every
emotion there is in the spectrum of human knowledge. Most emotions are still
positive but many are not: Fear that it
is too early to be confident in recovery. Shame that I am anxious about when
she will improve. Then, surprisingly to me, there is also grief.
Grief is an old,
familiar friend to me; I thought I might be done with him this trip. It is completely
normal, I know on an intellectual level, to grieve if your child has difficulties
of any sort. For so many months before Anya was born I focused on survival; if
she would survive, everything would be OK. We would figure it out somehow,
whatever difficulties lay ahead.
Grief, rather than leaving me tearful, leaves me irritable. Irritability
on top of an uncertain time table for progression of recovery, living nearly constantly
in public (the only private area at Ronald McDonald is in your room), and
overhearing drama from being in a hospital; well, it leaves me…hmm…well, polite
words cannot describe it adequately. Those who know me well know what I would
say.
I started this blog for several reasons. One was to keep
everyone in the loop on Anya’s recovery; another was to vent feelings I had
about having a baby with CDH. Another was my way of paying it forward, I searched
frantically for CDH stories at the beginning of Anya’s diagnosis; I hoped my
blog would help others. In time, it has
also become a witness of my faith as a Christian.
It is hard for me to strike a balance between being a woman
of faith and a woman who has experienced devastating times in her life. I am
afraid that I have sugarcoated my feelings about this journey in an effort to
maintain a thread of serenity through this story. I do not want to write a
story of despair, nor do I want to make others feel that a Pollyannaish,
sunshiny disposition is the only way to triumph over adversity. The first
lesson of grieving is to allow yourself to feel however you feel, and not apologize
for it.
In the spirit of that statement, I say to everyone: THIS
PART SUCKS ASS.
What you are feeling is totally what I felt. I am going to be honest though - at least for me - it gets a little worse. It's natural that when the adreniline and shock subsides, you start to feel more, cry more, get anxious more. Pretty soon (and I went through the weaning based on blood gas plan too), Anya will be extubated and there will be a flurry of exciting days. You will get to hold her for the first time - I mean really hold her. Once she gets from C-PAP to nasal cannula, you will get to dress her for the first time - and for me, when I held Dakota dressed for the first time, was the first time that I really felt like I had a baby. Once she is on nasal cannula, you will be able to start holding her without a nurse helping you, whenever you want, and that will be exciting as well, because she will feel more like yours. Anya will move to NICU II, which has a much, much different feel - more chaotic, but in a good and warm way. It's an exciting couple of weeks or so coming up and you have some great days ahead!!!! But then the feeding starts, and for me, that was the part that really sucked!!!!!! I was so done and ready to go home with my baby and all the adreniline leaves you and you get frustrated -frustrated and angry and sad that your baby is still there and tired of the walk to the hospital, of the elevator, of the beautiful tiles on the wall, of everything. But there are good days there too! You just always have to remember how far Anya has come, how special the place is where you are, how wonderful the people are who are helping to take care of your baby, and know that this time will become a distant, although vivid, memory at some point.
ReplyDeleteMany prayers for a good day today - for more good weaning and progress!!!!
Hugs,
Jennifer
Dear Kelly, thank you for writing this! I felt just the same - that I wanted to write the stuff that showed my strength and faith but that I didn't want to give the wrong impression of how freaking hard it was. And it seemed like once Sam wasn't expected to die, everyone thought things were easier. And it wasn't actually easier - just different.
ReplyDeleteYes, this part sucks ass. Well said. :) You can do it, of course, even though I know it would be better if you could just scoop Anya up now and take her home. Hang in there.
Corinne
Mama to Samuel, lcdh, Feb1/11
www.samuelslight.blogspot.com
Thank you both you ladies! I call it the 'Give a mouse a cookie' effect: you get what you want then you just want more!
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