Small, But Fierce: It Must Run in the Family

Today is Robert Rylan Landon’s 2nd birthday.  I felt like I should tell you a bit about how strong and special this boy is.  First of all I will always think of him as a gift to us from his big brother.  I knew that there was not going to be anyway I could possibly be pregnant and then handle an infant with the care that Rowan needed.  So I tried to push the possibility of more children after the twins out of my head.  And that was hard, me coming from a family with 5 children…I had always counted on having as many as I could feasibly afford.

When Rowan passed it seemed so incredibly right to try to conceive again.  Of course I was scared out of my mind, but we had been assured that Rowan’s genetic issues were not inherited, so we needn’t worry about another baby being born at such a disadvantage again.  Rowan passed in March and in August I was pregnant.  Because of our history of not only Rowan, but also several past miscarriages I got the VIP treatment.  At only 6 weeks pregnant I got to have my first ultrasound.   But there was no baby visible.  The little fetal sac was empty.  I was heartbroken.  It is a somewhat common event to become chemically pregnant, but not actually have a baby there…and it all ends in a forced miscarriage.  It is called a Blighted Ovum.  I of course was SURE this was the case.  By six weeks there should be something there.  My Doc scheduled me to come back at 8 weeks to check again.  She was very sure I was off on my conception date and everything would be fine.  I was not at all off…I was sure of this.

Two agonizing weeks later I went back for the ultrasound…preparing myself for bad news.  There on the screen was a naughty little Rylan measuring right at 8 weeks.  I had not been off on my dates at all.

So we progressed through the pregnancy.  At about 20 weeks something came up on a ultrasound that the baby(we didn’t know boy or girl) maybe had something minor going on with their kidneys.  Of course I was very scared of any and all complications.  We had an amniocentesis done, where they use a giant needle to draw fluid from around the baby and use the skin cells in the fluid to do genetic testing on the baby before he/she is even born.  It all came back looking perfect.  Breathing a bit easier… except for that dang kidney issue that would not go away.

The baby was measuring over 9lbs on the ultra sound…they had said that this could be off up to a pound in either direction…so we opted to induce a week early.

The labor was hard and a bit complicated…the NICU team had to be in for the final pushes.  He had a bowel movement in utero and they needed to make sure he did not get any in his lungs when he took his first breath.  This was the second time in my life I sat in a hospital room surrounded by people and I was crying out the words “My baby, My baby”.  before I even saw him the the NICU team said, “Boy!”  He did great he did not breath any junk in and he scored very well on his initial tests.  He was cleaned and wrapped and I finally got to hold him.  I just remember looking and this tiny pudgy face and and very dark eyes and telling him how much I loved him.

Everything for the next 24 hours or so went pretty well.  I thought I had finally gotten my happy baby experience.  His kidneys were checked the next morning and they were perfect.  We were calling family and posting on facebook…and our moms came up to visit…it was so exciting…I had the “HEALTHY” baby bed next to me in my “Healthy Baby Room”.

On the second night at the hospital I couldn’t get him to settle down for anything, I tried everything and I was exhausted…so I did what I NEVER thought I would EVER do.  I asked the nurse to take him the the newborn nursery.  The next morning we were woken up by our pediatrician’s partner at about 6:45.  She had come up to check on Rylan and noticed he was making little jerking movements…that very much looked like seizures.  I heard her say that they had decided to transfer him to the NICU right away.  Oh for Fucksake…I shut down at that moment and went and took a shower, while the rest of my world fell apart.  It had only been a year and a month since we lost Rowan.  It had only been two years since we had been in that same NICU with the twins.

We got a call up to the room that Rylan was getting a MRI.  And hour or so later we got a call saying that the MRI had shown a Grade III brain hemorrhage.  I knew baby’s with less of a hemorrhage and they had not fared well. I was scared.  I was giving up…I was seeing everything get dark around me. We quit answering phone calls or texts, or posting on facebook.  For once in my life I felt like I needed some privacy.  I didn’t want anyone but our immediate family to know that something was not ok.

Eventually I made my way down to the NICU to see my “healthy” baby with IVs, heart monitors, and nuero probes stuck to him.  I felt sick.  Another day passed…nothing really new except that this was the day we were supposed to be walking out of the hospital with our new little healthy baby….

I looked at our favorite nurse we we got to know very well with the twins and I told her straight out…”I do not think I can do this again.”  I told her I was scared for my own self.  I had never been so close to letting go of everything and just shutting down.  She cried with me and told me that they had just had rounds and that everything was really looking much much better than they could have imagined.  Our pediatrician walked in at that moment and he said the same thing.  He would most definitely see us being released on Tuesday (it was Sunday).  I didn’t believe it and told him as much.  He convinced me that things were going well.  Rylan was eating really well, he was breathing really well, he was on seizure meds already and they were controlling the seizures.

Now let me stop for a bit and say…just because we were getting to go home did not mean that Rylan was in the clear…not by a long shot.  His prognosis was still very much up in the air.  The hemorrhage could grow and damage more of his brain and/or he could continue to have debilitating seizures. Even if nothing more happened we had no idea what the effects of this hemorrhage would have on his physical or cognitive development.  They were really watch his left side movements as they thought is where the damage on his brain would effect the most.  We were to see a neurologist and a geneticist for the next year…I was adamant, not to have any of the same doctors as Rowan… I was also adamant that I did not want the school system coming out like they had for Rowan.  I learned what worked and what didn’t and I was going to hit the ground running.  If and when he needed therapy we would be going to PTC.  I really got a bit of a reaming from a few counselors there in the NICU but I didn’t care.  Rowan taught me how to be strong for my babies.

So back to Sunday.  I needed to check out of my room…but I could not handle the idea of once again leaving my newborn baby at the hospital while I went home to my own bed.     I also had this awful feeling about the carseat being taken back home empty.  Think about it…the last time I left a baby at the hospital and drove away with an empty carseat, was when Rowan earned his wings.  The NICU team was amazingly generous to me.   I was allowed to bring in an air mattress right into Rylan’s room and sleep right next to him…I attribute this to him being such a good nurser.  Our favorite nurse also suggested that we bring the carseat into Rylan’s room instead of taking it home.  And when he was ready to be moved to a crib…again our favorite nurse hunted down one of those “healthy” baby beds and she even put his cute little name tag back on it.  This is the crap no one thinks about being special until you can’t have it.

I spent the night in the NICU and had my never ending supply of BLTs and oatmeal (a perk of being a nursing mom in the NICU is that you get to order food all day long for “free”).  I loved so many of those nurses that it kind of felt like a slumber party…I was up with a new born anyway…it was awesome to have company!  Also that first night I stayed in his room was the night they killed Bin Laden…I was watching it on the news while nursing my newborn.

Long story short…We checked out of the NICU on Tuesday and Rylan continued taking seizure meds.  We went to all of his appointments, Nuero, and Genetics, he had a head ultrasound done and a review of that…we watched his movements like VERY nervous parents…and eventually we and his doctors realized he was going to be fine.  At nine months old he was discharged from all those Docs and was pretty much given a clean bill of health.

And now I get to watch that rambunctious, but caring, and VERY smart little screwball do whatever he sets his mind to…

To put things into perspective for you this is a small description of the common possible outcomes when suffering a grade III Brain Hemorrhage. From http://preemies.about.com/od/preemiehealthproblems/f/IVH.htm

Long-term consequences may be mild or severe, and are usually related to the severity of the hemorrhage. Infants who have grade 1 or 2 bleeds may have no lasting effects, or may have subtle consequences that are difficult to measure. All children who suffered from IVH as infants are more likely to use special education services than children who did not suffer from IVH.

Many children with serious hemorrhages will have no lasting effects, but children who suffer from grade 3 and 4 hemorrhages as infants are at risk for more serious consequences. Developmental delays may be severe as these babies grow. Children with a history of severe bleeds may also suffer from poor cognitive functioning and other disorders such as attention deficit-hyperactivity disorder (ADHD).

Woeful Wednesday

Sitting here with a glass of cheap Riesling, a good book that is about to be devoured, mulling over my thoughts. And what do I do best when mulling thoughts? I write.  So here goes…

These last couple of days have been strange ones.  Step back four or five years ago and my emotions towards the last days events would have been much more positive.  Yesterday, I got a call to come in for an interview at the one school I have been wanting to teach at since we moved to the area.  I have been applying for jobs.  So many friends have asked me why I am job hunting, this has kind of come up out of know where…or so it would seem to anyone not living inside my head.  I have been going stir-crazy lately, maybe it is the winter blues, maybe it is that my kids are getting that much more independent, maybe it is just the stagnation of my life as of late. Honestly this whole post could go on into deep discussion of all the reasons why (seriously it could I just wrote and then deleted three paragraphs about it.)  It simply comes down to the simple fact that way deep down in my heart of hearts I know that I need a change.  I also know deep down in my hearts of hearts that this change will not hurt my babies in the slightest.  Heck I was a daycare kid and now I write a BLOG!  Kidding…any animal with an internet connection can write a blog.  Though my grandma thinks it is pretty cool.

What this Woeful Wednesday post is all about it is…feeling woeful on a Wednesday…I don’t need to explain myself on my own blog. Geeze!  I am woeful because of my craptastic performance at my interview this morning even though my outfit was to die for!  I am woeful because my mind has been on Rowan a lot lately.  I am woeful because life doesn’t always follow the nicely bullet-ed outline you’ve had typed up in your brain since the 7th grade.  Woeful because I am not who I was four years ago…I can not figure out if I am ok with that or not.  Woeful because I am trying to learn to be patient…patient for something worth waiting for. I am woeful because…well… I am a woman and we just simply get woeful.  So let me sit here and cry “woe is me”, and drink my wine, and continue to let the sweet, smooth voice of my imaginary boyfriend Bruno Mars sing to me.

Just Another Check off My To Do List…

I have been trying to find a time to get groceries without children for over a week.  With Husband either at work or at school, there is very little time to accomplish anything without children.  And it’s not even that I don’t want to bring the kids shopping, it is that once I have two kids in a cart there is no more room for food.

This morning though we hit our breaking point.  I had NOTHING to feed the children for breakfast.  No oatmeal. No cereal. No bread. No fruit. No eggs.  I did not even have a few graham crackers to throw at them.  They ended up with some packaged cheese crackers that were given to them for Valentine’s Day from their great aunt. Neither one of them ate their award winning meal.

But whatever…a lot of times they don’t eat even when I do have food to feed them.  So they played while I drank my last K-cup of coffee and checked my emails, facebook, etc.  I had been waiting for a response that may have made my week a lot less sucky.  Did you know when you have zero emails in your gmail inbox the whole screen then proceeds to point and laugh at you.  Ok not really, but there is a line of text that says, “No New Mail!”   Like I am supposed to be super excited at how completely lame I am.

When I finally realized there is yet another meal I have no food for looming in the near future, I dress the kids and myself.   The word “dress” maybe overstating it a bit.  The kids look like kids…I look like death just rolled out of bed….with a bad week comes bad hair and bad skin.

I throw the kids in the car with my scribbled shopping list in hand.  I could have saved time and just wrote, “Buy everything….we are out of Everything!”, but alas I am a list person so off we went.  Still not knowing how I was going to get everything on that list in a cart that already had two kids in it.

Upon arrival at the store I found one of those awesome two-seater race car carts…I thought this was the answer to my “too many kids not enough space” dilemma.  It wasn’t, but I didn’t know that yet.

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The kids LOVE those steering wheels on the carts.  The kids still seem to think they actually run the cart.  Either my kids are very unintelligent or they have a great imaginations.  We will go with the latter.

So we began filling the cart in the produce department by the time we had gotten through three isles I realized the downfall of the racecar carts….Their awesomeness does not make up for their lack of space for food.  In the middle of the frozen foods my cart of food pretty much imploded.  All the while Hayden was very vocally telling me and all those around us that we have too much food and there is no more room for all of it!  I got the stink-eye from a nearby shopper when I said to Hayden, “We have too much food because you eat too much!”

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As we made our way through the remaining isles, I began to realize that the whole time we have been in the store other customers were smiling at us and making comments about me having my hands full.  At first I thought nothing of it…my kids are cute they always get smiled at….having two of them in one of those carts packed to the brim is a sight to see, but not rare I am sure.  The kids had really been pretty well behaved so I started to think all the comments were weird.

It wasn’t until we stopped for yogurt samples in the dairy isle that I saw what everyone had been smiling at.  Rylan had blue and green marker all over his face, hands, and arms!  How on earth could I have missed this when putting him in the car and then yet again in the cart?  I guess I was more than a little distracted…I was mommy in auto-pilot. I can not tell you how many of those little cups of yogurt my kids mooched from the cute little old yogurt sample lady…but I can tell you I felt horrible when she saw me reach for the cheapo store brand instead of her fancy too-expensive-for-my-kids Greek yogurt.

We finally made our way to the checkout line…I love it when you have a cart bursting at the seams and two small children about to detonate and the cashier asks, “How you are doing today?”  I never know how politely censored I should answer.  On one hand I don’t want to look like a crazy lady, but on the other hand…this cashier is the first person to ask me how I am doing in weeks and will probably be the last adult contact I have for the next 5 or so hours.  I really want to pull up a chair and just pour my heart out to her.  But I don’t.  I hold it together.  And roll my caravan of food and offspring out the door.  At least coffee was on sale, so I guess there is that.  Take that universe, take that!

 

 

Here I go…

Aside

I am feeling a change, a really nice, cleansing change.  The kind of change that comes around a few times a year…if that.  This is that change where the clouds go away and the grass turns green, and all that you can feel is the warmth of the sun on your skin.  This is exactly what I need.  I need a wonderfully simple change to clear my mind of the grimy dust and the thick clouds that the past year has left.  I am really hoping this change permeates through my brain and leaves a lasting effect.

This warmer sunnier weather has opened my mind and eyes…to brighter days ahead.  It is helping me regain my confidence.  I can handle life…every damn day of it.  I will get what I want out of life…I am not afraid of putting in the hard work.  I have never been one to settle…I have always needed to try my hardest and make it what I want…why stop now.  Wait and see…this Kitchen Dancer will be dancing right up to and over this hill.  Here I go.