My Family

My Family

Thursday, September 27, 2012

Another Doctor?

It seems like all I have done this week is go to the doctor. Correction specialists.  Many many many specialists. 

I remember when I was a teacher and had to sit down to that dreaded conference.  The one where you tell mom and dad that something is not right with their child.  That you are not a diagnostician, but you see stuff that isn't normal.  You have the Kleenex, the water, and your staff with you.  It is a hard conference to give.  I hurt with the parents.  This week I gained another new perspective.  I WAS the parent.  The doctors had Kleenex, water, and just the right words, but it still was hard. 

I learned new phrases.  Spasticity, epileptic risk, Pulmonary BPD, nystagmus, and many other big words.  Words that I am lucky to say or spell right.  I wrote them down and am now working on understanding them. 

But there were other things I learned to.  I learned that VCU cares about me as much as my daughter,  They asked me how I was, offered support, strenght, and most of all hope.  They answered my questions, listened to my concerns, and assured me that I was on the right track.  I learned that my friend Heidi will drop everything just to come to appointments with me so I don't have to be alone. 

Most of all I learned that I am Cary's parent.  That a specialist may tell me something, but I may get a better result doing things my way.  I had forgotten that for a while.  I thought that if I wasn't doing it their way that somehow my daughter would slip into a great abyss.  Well, about half way through last week I realized that I do have a little experience in early childhood and a lick of common sense so I started trying some new stuff.  Guess what?  Cary is still ticking:).  In fact, she is doing better my way.  So now I ask more questions.  I want a rationale for doing it their way.  Lets just say that some people don't like that.  Most do, but you get a few stubborn ones along the way.  But even they grudgingly admit that with 105% gain from the hospital that I must be doing something right. 

So today we are resting.  Cary's lungs are great, her neuro skills are delayed but within spectrum tolerance (that means she is slow but working to catch up), and her sodium levels are stable but that changes day to day.  Tomorrow I battle with endocrine on her diet.  I want her to be off of her nasal tube as she has discovered she can pull it out and we need to come up with a solution to how much she eats to keep her DI regulated but not so much that she becomes sick.  Every visit sharpens my mind for battle of Cary's best interests. 

After all at the end of the day I am the one who takes her home, not the specialists.  I am her voice and her advocate.  I am her mother.

Wednesday, September 19, 2012

We're Home!!!

First of all I want to say thank you.  It seems so inadequate, but after my last post I was given books, blankies, movies, a great chicken meal, clothes, movies to watch, and most of all your company.  I needed it.  I felt stronger and like I could handle the many challenges ahead.  

We were finally discharged after learning to insert an NG tube down Cary's nose and how to pump feed her if she refused to eat.  Which is what she was doing to at least half of her food.  She is slowly getting better at eating, but it will take time. 

We came home just in time to get ready for my parents to show up from Colorado.  We planned on laying low this past weekend and just enjoying family time.  We had a great weekend and by Sunday night I was taking Shannon to the ER.  We just can't catch a break around here. 

In addition to the love, joy, and laughter Cary is bringing us she also gave us her stomach bug.  Shannon got it pretty bad and passed out in our bathroom due to dehydration.  Luckily, a trip to the ER, some fluids IV style and a prescription for anti-nausea meds was all he needed.  I was able to get the doctor's blessing to take the meds if I needed them.  And I have.  My turn came yesterday and now I am fighting with this awful stuff.  I am surrounded by clear liquids, some jello that I just tried, and the meds. 

Thanks heavens mom and dad are here.  They can't do the tube feedings, but they have been great about keeping the kids entertained so Shannon and I can rest and get rid of this nasty thing.  It is nasty too.  You feel good for a while and then feel like you have been hit by a mack truck.  In the stomach. 

But despite all of this, I am so glad we are home.  I treasure my daughter and every day she tries something new.  She is starting to try to roll over, loves to babble, and is beginning to hold her head up.  We are convinced that she wasn't worked with in her previous foster home so she is further behind than she should be.  We are working hard, despite feeling like crap, to get her to try new things. 

We will continue to move forward and learn to navigate this new course that we have been set upon.  Hopefully, we will be rid of this rotten bug soon and Marvin and my parents will stay well.  Thank you once again for all the love and support!  We couldn't have done it without you!! 

Tuesday, September 11, 2012

What we need right now

-What good is it, my brothers, if a man claims to have faith but no deeds?  Can such a faith save him? Suppose a brother or a sister is without clothes and daily food.  If one of you says to him, "Go I wish you well; keep warm and well fed," but does nothing about his physical needs, what good is it?  James 2:14-16 

I don't care what you believe, those are words to live by or think about.  And I have been.  Thinking about them.  I am not a great person in a crisis.  A building could be falling over, bombs droppings, and people bleeding and I still wouldn't know what to do.  I am a person who needs directions at all times.  Not a real leadership quality, more sheep like frankly, but it is who I am. 

But recently I find myself trying harder.  I am holding doors open for people with full hands, giving out quarters for the vending machine, just smiling a little more at someone who looks like they need it(believe me if they are here and not a nurse, they need it). 

I also am trying to help out nursing interns through Cary's daily routines.  We are a teaching hospital and Cary is a unique case so the more they learn from her the more they learn how to help her.  Yes, we are still at the hospital.  It looks like it will be awhile before we go home.  Everyday is a new test.  Tomorrow we are looking at an x-ray to see how her bottle latching skills are.  Not a biggie but frustrating none the less.  I want to be at home.  Period.  Her diabetes is getting under control but because the previous foster mom neglected to do so much we need education to help our daughter achieve her full potential.  After talking to OT today, they are positive that she is going to come a long way, but frustrated that nothing has been done with her so far.  It is like a bowl of potatoes on the counter.  You can sit and stare at them all that you want, but they won't get mashed unless you do some work.  They will just rot. 

I am also not good about telling people what I need.  I like to think I can just do it all, but I am getting exhausted trying.  So I have figured out that I need help.  And support.  And prayer. 

Don't get me wrong prayer and warm thoughts are great, but as James said sometimes a little practical backup is called for.  So here are some of the needs we have right now in no particular order: 

1. Company.  As much as I love nurses, doctors, PT,OT, ABC-XYZ they cannot replace friends and family.  If you are uncomfortable being in a hospital Shannon or I would meet you downstairs in the cafe or other non-threat areas.  The only reason I am here is because of Cary, not for kicks and jollies.  You can even phone and talk to me.  Mind you, I get interrupted quite a bit because of nurses and such but I still like human voices. 

2.  Food.  We need healthy food.  Not Chick-Fil-A or carb crap.  O.K.  a little carb crap.  You can just drop it off and run or stay and visit.  It is really expensive having to buy all of our meals and the choices are not always that healthy.  We have a tiny fridge here and one of us goes home at nights so the food would keep safe. 

3.  Stuff for the baby.  Right now Cary is stuck to an IV and wires.  They decrease daily, but she still is crib bound a lot.  My good friend bought her a balloon and she has really enjoyed looking at it.  Her room is bare and cold.  They have broken and dirty toys here with no really good baby stuff.  I have read her the same three board books over and over and over.  She is not complaining, but I am.  A mobile, balloons, a toy or two that flashes and lights up to help improve her focus.  Soft thick blankets.  They keep the room like a Popsicle and she is getting a skin rash from hard scratchy hospital sheets.  CDs.  Anything really.  Just something to keep her entertained for how ever long they are going to imprison us here. 

4.  Movies.  For us.  Shannon or I sit up at nights and are here pretty much all day long.  Cary does sleep.  So a nice comedy would be good to watch on the laptop.  Shannon has a thing about depressing movies so the happier the better. 

I'm not posting this list to guilt people into doing things.  Please don't feel that you must.  People have been asking and as I said I have a hard time with the idea that I am not wonder woman.  I am happy with the prayers and thinking of yous as well.  I really appreciate them. 

Thank you all for your love!  We are still holding on to hope! 

Sunday, September 9, 2012

Darkest before the 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. 

Monday, September 3, 2012

Baby Eve

Alright, not the best post title.  But really what would you call it?  Last day of sleeping all night long?  Last day of having one child?  I just don't have a good name for it. 

But I do have something.  Hope.  Dreams.  Faith.  O.K.  I have lots of somethings.  Right now the house is very clean, the laundry has been cranking nonstop, Marvin is having a much needed nap, and I am taking a break.  Also a much needed thing:). 

We have been going crazy around here.  Between learning the proper way to deal with a pack and play (other than beating the tar out of it), scrambling to get items for the baby, and giving extra time and attention to Marvin as the full force of this is hitting him hard.  Things have been going at super sonic speed. 

I am ready though.  Both mentally and emotionally.  I am ready to face the storms of what lies ahead with courage and strength.  I am ready to ask for help when I need it.  I am ready to find humor in bad moments, savor good moments, and learn from the 8,000 mistakes I am sure to make along the way.  I am ready to admit that I am NOT wonder woman and cannot do it all perfectly.  I am ready to enjoy the little moments.  I am ready to fight for what this child may need and not back down.  I am ready to exchange my old dreams for new ones.  Not necessarily better or worse, just new.  I am ready to make new friends and keep in touch with old ones.  I am ready to find people who understand and support our family in healthy ways.  I am ready for bad moments, good ones, sad ones, and happy ones.  I know that I can learn and grow from them.  

So tomorrow at 11am we will welcome a new little one into the home.  But I have already welcomed her into my heart so this is just a formality.  I AM READY.