Post Glenn: Day 12
Melancholy Day
Woke up early morning to head back to the Ronald McDonald for some me time: shower, brush teeth, change clothes, pump. On my way back to the hospital, I walked past the hospital’s construction site–they’re building a new building. I thought of all the chemicals and dirt and toxic remnants oozing from the steel bars and machinery. Suddenly, feelings of guilt I had consciously packed away just months ago spewed throughout me.
You see, while I was pregnant with Justin, I worked in a place that was undergoing some major construction–we were building a banquet hall attached to our existing storefront. The thought of all those chemicals from the paint, dry walls, wood, dirt, and machinery seeping through my body and into Justin’s system pestered me from the beginning. But, this was my place of work; I had no choice (or did I?). And, everyone convinced me that I was just a crazy, over paranoid mom.
So, I continued to work. At 19 weeks of gestation, Justin was found to have multiple heart defects.
Sometimes, I bring this up to Loi. Most times, I hide this guilt that I did this to my baby away.
Today, the feelings are undeniable.
We’re on Day 12 of Post Glenn. My Justin has been in the hospital for 20 days including the time at CHOC and CHLA pre-op. My usually happy, trusting baby now cries at the sight of a stranger approaching him, even if it’s just for an innocent assessment.
They say, “He’s so smart.”
I think, “This is so sad.”
His innocence has been tainted…by needles, tubes, knives, pain, unfeeling people.
When he sees me, he cries. His brow furrows. His body tenses.
He wants to go home.
I want to take him home, away from this place.
I want to take away all his pain, psychological distress, and physical imperfections.
I want to undo all that I’ve done to him.
If only I didn’t work…
The tears, I felt it creeping up from my stomach to my throat. They won’t come out if everyone would just keep away and not talk to me.
I dragged my feet through the hospital towards the elevator.
“Let go,” I tell myself, “Just. Let. It. Go.”
The bell dings when I reached the 6th floor. That smell, ugh, that hospital smell greeted me. **Sigh** My baby smells like it, now.
There is no time for self-pity. I didn’t deserve it. Justin needs me, now.
I turned the corner to my baby’s room, put on my business face, and went right to work.
Discussion with the Nurse Practioner
Congestion
According to the Nurse Practitioner, Justin still sounds a little “wheezy,” But doesn’t seem too concerned. The antibiotics Justin’s been on to help rid of the bacterial infection is up tomorrow.
RSV Shot
Justin is due for his RSV shot. If we are not discharged by the end of this week, I’m having the shot administered at CHLA.
Outpatient Feeding
Justin’s been in the hospital for way too long. I asked the Nurse Practitioner if we could do the feeding thing as an outpatient. She said, sure, if we’re ok with him going home with an NG tube. Loi and I are fine with that if it means we’re out of here!
January 30th, 2008 at 8:30 am
I can really sympathize with a lot of your feelings. It’s completely natural to feel those emotions. You’re the mama and you want what’s best for your baby.
Hold onto hope and faith right now!
As always, your words are beautiful. Thanks for sharing your thoughts.
February 2nd, 2008 at 5:09 pm
I’m sorry that your child has this genetic heart defect, but come on, if you had not done these surguries, he would have died, maybe he still will, but maybe not, and now you tried to do what you can. So even though he’s suffering now, he will not remember most of this, but he will be more likley to survive.
The doctors want to help your child, not hurt him, they want to save his life, not kill him. The oath doctors take states “above all, do no harm”
If you chose to belive that the doctors are trying to make ANYTHING worse for your baby, i can promise you they aren’t, but they aren’t god, they can’t fix everything.
My best advice is just stop blaming, the doctors, yourself, blaming doesn’t make anything better.
Best of luck.
February 2nd, 2008 at 10:59 pm
Hi Lindsey,
Thank you for the taking the time to read my blog. This experience that I share with my child is one that I’d like for all to read to gain better insight into the life of a mother who helps fight for her child’s life.
This journey that I share with my child is full of ups and downs, highs and lows. There are moments when I want to find blame, be angry, think irrationally to help erase the pain I have from seeing my child suffer. But, as I stated in many of my posts, I believe this child was given to me for a reason, things that happen to him are meant to be, that despite the pain that I feel for him, I blame no one. He is a gift, a miracle, a life that has changed me and my husband for the better. I’ve said before, I would not change him for the world.
Sometimes, I blame myself because I’m his mother; he came from me, my body, my genes. I help created him. I carried him. Anything I ate or did affected him. So, it is difficult not to feel the guilt when I see my child suffering. It’s hard to detach myself from my child’s pain knowing that he came from me.
Obviously, my child would have died if I had decided not to have him undergo surgery. I’m an educated, 27 year old woman. I am raising 2 young boys, have had a career up to Justin’s birth, continue to educate myself about my son’s condition and treatment, learned much of the medical terminology related to his condition to the point where doctors and nurses think I’m in the medical field. Anyone who meets me will not take me for a fool. I make sure of it. So, given all this, believe me when I say, I know my son would have died if I had not given surgery a chance.
In my moments of weakness, I may think irrationality, a little crazy, even, like when I said,
“I thought, what if we hadn’t even gone through with the first surgery, would his heart have healed on its own? ”
But, if you would have read on, you would have found me also saying:
“Eventually, I got over my self loathing and pitying and opened up my eyes. Things really do happen for reason. I was meant to learn of his condition early on to allow myself time to get over the shock and mourning so that I could concentrate on his care after he was born.”
I even commended the doctor who had diagnosed my son in the first place:
“Truth is, the things happened. I found out of Justin’s heart condition without great effort at a routine ultrasound. I was led to an amazingly talented cardiologist who diagnosed Justin almost to the tee. I was allowed time to prepare–physically, mentally, emotionally. With those events occurring the way it did makes me believe that any other path was non-existent. Regardless of how Justin’s multiple heart defects came to be, his life on this earth with Loi and me was meant to be.”
I have met some of the most brilliant doctors and nurses during my journey that I cannot gush enough about. I am dedicating a future blog to them all. But, let’s face reality, not all doctors and nurses are made the same. The fact that they all have an M.D. after their names do not mean they all have the same knowledge, insight, compassion, understanding, and greatness. I choke up when I think of the brilliance (and I see lights surrounding this word as I type it) that my family and I have been surrounded by throughout this journey. I cannot stress how fortunate I feel to have Dr. Rebolledo (cardiologist who diagnosed my son in utero), Dr. Batra and Dr. Bar-Cohen (electrophysiologists who helped us in such a crucial time in Justin’s life…meaning life or death for him), Dr. Starnes (the surgeon who kept Justin on the bypass for only 30 minutes while performing the Glenn), Dr. Wells (the surgeon who assisted in Justin’s surgeries, but continued to make crucial decisions for the aftercare), Dr. Yu (pediatrician who knows more than any pediatrician should know)…the list goes on.
I will say this again: I am surrounded by greatness. And, never once have I blamed a doctor for my son’s condition or what has happened to him. My husband and I have come to a point in our journey where we KNOW these things will happen no matter how carefully we plan…it is just meant to be.
My experience with all the doctors and nurses and surgeons that I’ve met is that there are those who are more compassionate than others. There are those who recognize that my child is a person who feels pain regardless of whether he remembers it or not. There are those who are a little bit more willing to take the time to figure out why my child cries than just shoot narcotics through his IV to “make him feel comfortable.” There are those who are a little bit more experienced, careful, thoughtful than others.
You know what, I know these medical professionals are not out to deliberately harm my child, to make things worse for my child. But, you’re right, these physicians and nurses are not GOD, they do NOT have all the answers. And, their decisions for my son will always vary depending on what they each feel is best for my son from a medical standpoint, based on their own limited knowledge.
But, Justin is not their son, he’s mine. I will worry how that needle, that prick, the way they pick him up and talk to him will affect his psychological development. I will worry that they’re not giving him enough attention and forget about him or not know his medical history enough to make the best decisions for him because there are too many other patients under their care. I will worry if they actually care about my child’s well being or if he’s just another job that they’re making money off of.
Girl, this is reality. I’m no naive little one, let me tell you. If we were living in utopia, then these worries would not exist. But, I’ve talked to enough doctors and nurses, I’ve seen enough in action to know they do not all care for my child the way that my child deserves to be cared for because they’re just too busy, too inexperienced, or too caught up in their own ways to listen to what a mother’s got to say.
There’s so much to say. Being in the hospital and meeting with as many specialists as I have really has opened my eyes up to the health care system.
But, girl, thanks for wishing me luck. Truth is, we don’t need it because we believe in prayer. We believe in things happening for a reason. We believe that regardless of how much we plan there are things absolutely out of our control. Ultimately, it is up to the Great Physician how our Justin’s life will progress.
I hope that you will continue to join us in our journey to gain further insight and a little more compassion. Our Justin has given us so much, and we just want to share a little of what he’s given us with all of you. Our life with him is not perfect. But, he is a blessing. He’s taught me to love the little things in life. If you read my past posts, you’ll understand more…
Take care.