Overwhelmed…

I should probably step away from the computer right now. I’m not in the greatest frame of mind and this will probably be a rambling, whiny post. I know I promised you all Cooper’s birth story but right now I need to write about what’s been happening in the weeks since he’s been born.

The definition of faith: belief and trust in and loyalty to God

I’ve always said I had faith in God. I believed in Him. I believed He had a plan for my life, and I trusted in that plan.

It’s so easy to say that you have faith and trust when things are going your way. It isn’t so easy when things are chaotic and out of control. It’s harder to put your faith into action when you are asking “why me?” or in my case, “why my child?”

Cooper was born on January 14th, 2009. I tried to breastfeed right away but was not successful. Over the course of three days, with the help of the lactation consultant and many nurses, I tried and tried to get him to latch on and eat. He weighed 6lbs 12oz when he was born and had dropped to 6lbs 4oz by the time we left the hospital. He also developed jaundice on our last day there, so the first week he was home we had to take him to the pediatrician every single day for weight checks and to get his bilirubin levels checked. He was on the bili lamp at home for four days. 

I started to supplement with formula just to get his weight up but I really and truly wanted breastfeeding to be successful. I did everything I could think of – herbs, pumping, saw a lactation consultant – and I finally had to admit that it just wasn’t working. My milk never came in, despite taking medication. On my own I was starving my child, so I finally made the decision to just switch to formula. That first week was such a battle – I didn’t realize I wasn’t producing, so I’d put him to breast and he’d try to eat and just scream because he was hungry. I couldn’t figure out what I was doing wrong until I started pumping and could only get an 1/8oz in 15 minutes from both breasts. When he went to only formula, he went from 6lbs 4oz to 7lbs 2oz in a matter of a few days.

I didn’t exactly bounce back after pregnancy, either. Besides your normal complaints, my blood pressure remained elevated even after I delivered. I started having horrible headaches that Motrin couldn’t touch and that lasted all day. My mom stayed with us the week after Cooper was born, and she took me to CVS to use their BP machines on the day that I had a particularly bad headache, and it was as high as it had been when I had been hospitalized for pre-eclampsia. My OB has put me on blood pressure medicine, but so far my BP still hasn’t come down to “normal” levels. I thought once your delivered pre-eclampsia went away? I never had high blood pressure before I got pregnant, although it does run in my family.

One Friday a couple of weeks ago, Jason and I were driving home from a doctor’s visit when we got a call from the pediatrician’s office. Jason answered, and I could only hear his side of the conversation: “OK. Um hmm. Yeah, we’ll see you then.” The nurse had told him that Cooper’s blood work had come back abnormal and we needed to bring him in for more testing. And all my husband says is “Um hmm”? MEN.

I called back for more details. I’m not sure if every state does this, but in South Carolina the hospital draws blood and sends it to DHEC for a newborn metabolic screening. Cooper’s levels of acyl-CoA were abnormal. The nurse was quick to assure me it could be a false positive or a lab error, but all I heard is SOMETHING IS WRONG WITH MY BABY. We made it home in record time and I made a mad dash for the computer to figure out what this meant. Girls, take it from me: don’t Google when your doctor gives you a possible diagnosis. No good will come of it. All you will do is freak yourself out. TRUST ME.

From the DHEC website: Medium chain acyl-CoA dehydrogenase deficiency causes an error in fatty acid metabolism resulting in a child's blood sugar becoming dangerously low. About 20 percent of children with MCADD die before diagnosis if screening is not in place and those who survive may have serious residual effects. That was the best definition and prognosis I found. Other websites said babies with this condition should be diagnosed immediately after birth, because days or weeks undiagnosed and untreated leads to significant brain damage. Oh, and children with MCADD also had a very high risk of dying of SIDS.

So of course all I took away from that is best case scenario my child is mentally retarded, and worst case he dies. I was hysterical – to the point that Jason called them pediatrician’s office, who was five minutes from closing, to tell them someone had to talk to me and calm me down because he didn’t know what to do with me. God bless our wonderful pediatrician, Dr. Pittard, who called and did his upmost best to reassure me that everything would be fine. I almost believed him. Almost.

Before I offend someone, I do want to let it be known that I am not saying I wouldn’t want to have a child with special needs or who is mentally retarded. I am a social worker, and I work with clients who are all diagnosed as mentally retarded. I love my clients, and I do love and would love my child no matter what his needs. However, no parent wants to hear their child is going to have any sort of pain or struggles, and I’m no different. Because of the work I do, I know firsthand how much children who are different in any way struggle. They are beautiful, loved, and blessed, but their lives are different in a way that children who do not have special needs can not understand. I won’t apologize for not wanting my child to experience that. If Cooper did have special needs, I would accept it, love him, and do my utmost best to help him lead a wonderful life. But do I want that for him? No.

Here’s where my statement about faith and trust comes into play. Everyone around me kept telling me that it would be fine – it was sure to be a false positive – but all I could focus on was what if it wasn’t fine? What if it was positive? All I could see when I looked at my baby was the what ifs. What if something happened to him? I spent my weekend in a state of panic and tears until I received some excellent advice from my friend Melissa, who advised to me give my worries to God, let it go, and let what happens, happen.

That was easy to hear, but not so easy to do. I said I had faith in God and trust in His plan, but as soon as I would pray for him to take away my worries, I’d find myself crying and worrying yet again. One day when I was in the shower, I found myself praying yet again for God to take the stress and worry away, and to help me truly trust in His plan for Cooper’s life. I visualized the stress being taken away from my shoulders… and suddenly I didn’t feel quite so overwhelmed. I was still scared, but I felt better able to handle my fear than before.

The following Monday, we took Cooper back in to the pediatrician’s office (Oakbrook Pediatrics in Ladson, SC) to have the blood work redone. His normal pediatrician was out that day, so we saw Dr. Smith. Dr. Smith examined Cooper, and we mentioned that his umbilical cord had fallen off the night before. He examined it and noticed it was bleeding a tiny bit, and recommended it be cauterized with silver nitrate to stop the bleeding. The nurse brought in the kit, and Dr. Smith looked at and said “Hmm, I’ve never seen one of these before” and “I don’t know how to use this” before saying “oh yeah, this is the same thing you use on cold sores.” Looking back, I don’t know why I didn’t snatch my baby up and run out of that office, but I didn’t. I trusted him to perform what I assumed was a simple medical procedure on my child.

The doctor wet the silver nitrate, which was in a q-tip form. He used a lot of water, and it welled up in Cooper’s belly button and spilled out onto his stomach. The doctor finished up and wiped off his stomach, and I asked if we could bathe him. The doctor told us to stick to sponge baths for the time being. Shortly thereafter we left the office and headed home.

Once we got home and changed his diaper, we noticed the area around his belly was grey. Jason has used silver nitrate on the submarine before, and he said it was common for the skin to turn black, so we didn’t think anything of it. That night Jason woke up for the 4am feeding, and I woke up because Cooper was screaming. When Jason went to pull off his diaper, the skin around Cooper’s stomach came off with it.

The night the burn happened 

About a week later

We called the nurse on-call, and while we were waiting on a call back, Jason got online and found the directions for the silver nitrate kit the doctor had used. #1 on the directions was to cover the surrounding areas with Vaseline to prevent possible burns. The nurse called back and we explained what happened – she tried to brush us off and told us to just wait until morning and bring him into the office. We ended up taking him to the ER, and the doctors there confirmed it was a second degree chemical burn.

The next day, we did take him back to the pediatrician’s office. Our normal pediatrician was scheduled with someone else, and we made it clear we didn’t want to see Dr. Smith. We ended up with the Nurse Practitioner, Mary Lou. We explained step by step what had happened and Mary Lou told us “you shouldn’t blame Dr. Smith. It could happen to anyone. I don’t use Vaseline and I’ve been doing this for 30 years. It could have happened to me, too.” He was prescribed silverdine cream for the burn and we were supposed to keep it covered, watch for infection, and return in three days.

I stewed over what had happened and their response, and finally called the next day to file a complaint with the office. They had me speak with the office manager, and I explained what had happened. I told the OM that I understood that people make mistakes, but this had happened at the expense of my 2 week old infant. I do not hate Dr. Smith and I don’t want to see him punished because I do not believe he set out to hurt my child. What I wanted was an apology and some sort of reassurance that this would never happen again. I was told that the OM would speak with Dr. Tillman, the owner of the practice, and she would get back with me. I explained that I didn’t want to leave the practice because I love our regular pediatrician, Dr. Pittard, and would only stay if I could be assured I would only see him in the future.

I never got a call back from the OM. We took Cooper back on Friday to see Dr. Pittard and to have him look at the burn. I asked the nurse to bring in Dr. Tillman (the owner of the practice) just so she could see what Dr. Smith had done. She came in, pushed Dr. Pittard to the side, examined my baby, and said “This should heal just fine. He shouldn’t scar.” and left the room. Jason and I were infuriated – first of all, I didn’t ask her to come in to examine and diagnose him. Dr. Pittard was there for that. All I wanted was her apology and assurance that it wouldn’t happen again, as owner of the practice and the person who had hired Dr. Smith. After she left, we vented to Dr. Pittard, who was the only person to tell us he was sorry about what had happened. He also told us that due to the nature of the burn, Cooper could scar. As we were leaving, we saw Dr. Smith, and he did not acknowledge us.

We decided after we left that day that as much as we loved Dr. Pittard, we couldn’t justify staying with the practice. We would wait until Cooper’s test results came back and then switch him to the military clinic. After talking it over all weekend, we decided to contact a lawyer. It isn’t because I want money, but because I feel like they have completely ignored our complaints. I don’t feel reassured that this won’t happen again, and if I need to file a lawsuit to make them take me seriously, I will.

So needless to say, things have been overwhelming. Besides the lack of sleep, there has been a whole host of other problems to deal with as well. I’ll be glad when things calm down and all I have to worry about is a baby who sleeps all day and is up at night.

Update: I saved this post because I wanted to have the test results before I posted it on the blog. The results are in, and they are NORMAL! It was a false positive. Praise God, and thank you to everyone who prayed for us. It means so much to me. His burn is also much better although it does look like it might scar. We are still looking for a good lawyer, so if you have recommendation for medical malpractice in Charleston, SC please let me know!