Tuesday, September 11, 2012

Darkest before Dawn

So I had really planned on having this wonderful, heartwarming, mushy first post of family life at our home. I had planned on browbeating Shannon to get the picture function to work so everyone could oooh and ahh over our little miracle. I had planned to laminate a Canada unit for my work, bake for my parents visit in a week, review a book manuscript that a good friend intends on publishing soon, and do lots of other things.

Instead I have spent the past 4 days either at the doctor or in the VCU/MCV hospital in Richmond. I have gone up and down like a roller coaster, have seen how little sleep a human can function on, and the 20 pounds I have managed to drop are creeping back on thanks to a huge carb/comfort food binge.

But let me back up a bit. Cary came home on Tuesday. We all loved on her, fussed, cooed, and spoiled her rotten. Even Marvin. Good grief. I went to the bathroom one time and came out to find her surrounded by crayons, paper, tractors, and 3 race car piled on her. He was sharing. I couldn't fuss about that could I? Thank heavens she has crappy eye hand coordination. So she couldn't get it near her mouth, but not for lack of trying:).

By Wednesday her appetite had decreased slightly and I was worried that she was constipated. I talked to her social worker and we agreed that I should take her in to the doctor. On Thursday, still no poop and she threw up a little. Again, no big deal. Babies throw up right? But deep inside my head there was a little alarm bell starting to go off. So I took her into the doctor they gave her a suppository, it worked and I found out she had been on Mirlax for her constipation issues. Once again no biggie. I commented on her lack of color and appetite that afternoon but I was brushed off. So I took a breath and chided myself on being overly paranoid. But something still felt off. Cary refused to eat that evening and was unusually lethargic. Once again I felt a little nervous, but my sister in law was over and I chatted with her and I decided to relax a bit and that I really must be loosing my mind.

I checked Cary through the night and she slept through her feeding. I had decided at that point there was something wrong and unless she ate normally we were going back to the doctor pronto. So I fed her a bottle and 15 minutes later she was projectile vomiting. Not once, not twice, six times. Violently. She was turning purple. I was trying to stay calm, get Marvin on the bus, and tell him that sis had to go back to the doctor, but I am sure that she has a little bug. Marvin was freaked but my calm demeanor reassured him so he went to school with a smile.

So after her left I proceeded to have a nervous breakdown and cry. I called the social worker and left a message and called the doctors office and got her in as soon as possible. When Ms. J called she sounded stressed about it and I told her we would go to the doctor ASAP. She asked me to call with updates. I said I would. She said it was probably nothing. So I went to the doctor and after she took one look at Cary and read her records she said I needed to go to the pediatric ER due to her diabetes issues. Say what?

Now I remember reading that she had something called diabetes insipidus but her social worker blew it off when I asked about it saying that she had "outgrown it" and it wasn't anything big. So stupid me I believed her and I even said something along the lines of that to my sister in law. Whom I am sure thought I was crazy when it was brought up. She does have a medical background. But stupid me chose to listen to a social worker over a person with a medical degree. Let's just say that that will NEVER happen again.

So I went to the ER certain that my child was dying, I was a crappy mom who didn't deserve any children and I was probably going to get her taken away from me because I am a horrible parent who didn't deserve to live. But I pulled it together because Cary senses stress like a radar and started screaming murder on the way down. So I pulled over, held her, and told her that I loved her and that she is very sick and we needed to go to the nice ER people to give her an IV. I am sure she thought I was some deranged fruit loop but she stopped crying blew me a happy raspberry (darn kid didn't even have the nerve to act sick anymore) and away we went. Oh and I had called her worker and let her know. All of a sudden Ms. J was taking this very seriously. She asked about her needing insulin. I said was she on it before? Of course, she didn't know. That was oh so helpful.

So I made it to the ER, met Shannon and after poking my poor baby and shining blue lights on her to find a vein they found one. After 5 painful jabs. Once she started getting fluids she started pinking up some. Then the questions started. Then the ER team found out we had only had her 3 days. They began offering congrats and we worked as a team answering what we could and getting Cary ready to be admitted. At the time we believed that she would be overnight, we would get her fluids, and send her home. Unfortunately, life is never that simple. Cary's team began to come in. When I say team I am not talking about the Green Bay Packers. I am talking about a neurologist, feeding specialist, PCP, endocrinologist, and vision specialist. They were briefed on our 3 day induction, offered congrats, and then looked grim.

They said that they had lost track of Cary. She had missed several critical doctors appointments. What did we mean when we said she wasn't on any medications? Do we know about this. It was at this point that I realized that we were in some serious do do. Unfortunately, we need to stabilize her. You guys will have to stay in the PICU for several days. Cary's team will come in one at a time so you don't feel so overwhelmed (like that was going to help insert eye roll). We are going to get on the same page and work to get her back on maintenance. Don't worry Mrs. Fields, don't worry. Too late for that one.

So I called the social worker. By that time I was boiling mad. Why didn't she let us know about these missed appointments? I could have taken her in earlier. Apparently, Ms. J had no clue either. I had pretty much decided at this point that she is going to be as helpful as mammary glands on a bull and I would table this issue for now. I had a sick baby and a husband who looked like he had been hit with a mack truck who could only say over and over that they lied to us. They friggin lied to us. I got to that problem later on but right now I crooned and stroked Cary. I kissed her. Then the shunt doctor from hell came in, banged on my poor baby's head like she was a ripe melon and tapped her shunt. Good news mom! Her cat scans came back great and she has nice clear fluids and her head looks better than ever. Everyone is pleased about that. Well whoopee do for that. So after I once again calm down my kid and develop a healthy loathing for neurology we get a room in the PICU.

Meanwhile, at the bat cave my wonderful in laws have picked Marvin up and brought him to the hospital. I loved on him so long and hard. I am sure he thought I was a fruit loop as well but I didn't care. After you have been through all this you need to hold on to something "normal". Marvin cried but went with grandma and paw paw. I went back upstairs to be with baby. We were given an extra "room" with a broken twin bed, shared nasty bathroom, and it is either freezing or roasting. But it has been "home" and allows Shannon and I to get some rest in between being with our angel.

Yesterday morning was when we found out about diabetes insipidus. It has nothing to do with blood sugar and insulin. What it is is a communication between the pituitary gland and the kidneys. When Cary was born so premature her little brain hemorrhaged and damaged her pituitary gland. So the gland is supposed to send a chemical to to the kidneys telling them to clean out the yucky sodium and waste and reabsorb the waters to function. In a person with this type of diabetes what happens is that they pee the water and keep they yuckies in the kidneys and pee excessively. They go in reverse. So imagine Cary is an adult. She would have to drink one gallon of water every hour on the hour to function at a normal level. To live. But life isn't like that. If a normal person gets a stomach virus (which is what they determined that she has. She has an elevated white cell count so she has a virus. They also tapped her spine and are keeping an eye out for something more serious, but so far there doesn't seem to be anything worse) they can live 24-48 hours without fluid. A baby with diabetes insipidus can dehydrate and die within a two hour period. It was at that point Shannon and I came pretty much unglued. My baby COULD HAVE DIED. If I hadn't followed my gut we would be burying my child. Shannon and I sat downstairs in the cafeteria and felt very helpless. I cried and Shannon went numb inside.

Then I realized something. I AM A GOOD PARENT. Not a perfect parent, but a pretty damn good one. I CAN DO THIS. My child has a disability, not a death sentence. So I asked question, lots of them. The nurses rallied around me and offered there support and encouragement. Every time I felt myself flagging God sent in an angel disguised as a janitor, nurse, doctor, cafeteria worker, friend. I found something I thought I had lost. I found hope. It has been that hope that has held me up. Then Cary started to improve. People listened to my concerns. When my alarm bell went off I spoke up. For better or for worse Cary is MY daughter.

At the time of writing this a ton of doctors and nurses came in. They were smiling. At me. At us. We get to move out of the PICU and into the nursery wing. If she continues to improve we will go home tomorrow afternoon. There are still hurdles to jump over and I have a major bone to pick with DSS but I am stronger than this diagnosis. I want Cary to be stronger than it too. I don't want her to be some sort of sniveling coward. I will raise a strong and resilient daughter just as I am tring to raise a strong a resilient son. My children will NOT be defined by their conditions.

Well I am at it I want a purple heart for surviving this:). OK, that is probably pushing it. But I would settle for a nice hot healthy meal with not a carb in sight and lots of fresh green veggies. I am craving fish, peas, salad, chicken, pears, and oh all right a little tiny bit of chocolate cake (I'm a girl, sue me). I am also craving time with Marvin. I need my other baby. And clean laundry. Shannon has tried, bless his heart, but he is starting to bring me back weird outfit combos and I am going to start feeling like a circus freak if I don't get some decent clothes. And don't get me started on the guy we share the bathroom with and how he locks me out when he isn't in there and grooms more than most girls I know while I am holding my bladder and thinking of how to cut off his hot water supply. So I am hoping to go home for a few precious hours. To sleep, eat, and love on my son. To begin to try to live my new normal and even more chaotic life. With joy, strength, and above all hope.

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Amy Fields is now a mom to two stay at home kids and is learning how to naviagate this new world.  You can follow her at Many Kinds of Families.

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