Transition

Today was Day One of the rest of my life.  Reality has hit me hard.  Daddy went back to work last night, leaving us to fend for ourselves today while Daddy sleeps.  Done this a million times with Dominick, not a problem. . .today? Problem.  I feel like today lasted a hundred years.  A hundred AWFUL years.  I've been crying all day.  I am completely,  physically and emotionally exhausted.  I could sit here and give you the ins and outs of the day, but I'm sure you could imagine.  A teething 2 year old and a newborn.  Add to that our first trip out of the house, just the 3 of us = hysterical 4 week old and a temper tantrum in the pediatricians parking lot.  It was ugly and embarrassing.  But hey, it happens.  I know I am not the only new mother to 2 to have gone through something similar, I get that.  Today tho, today was not just that.  For some reason today, on top of all the typical, to be expected stress I have also been overwhelmed with grief.  Grief in so many forms I can't even process it.  I find myself returning to the Down Syndrome birth board for comfort then breaking down crying with the weight of it all.  I am stuck in this in between world.  I have yet to uncover my new reality.  I cannot help but fear the future.  As hard as I try to stay positive, I just can't let go of the pain in my heart.  I have had so many kind and amazing words from family, friends and even strangers to help me see that everything will be ok. I know it will.  My head does, my heart is still in denial. I love my little angel with all my heart.  Sometimes tho, like today,  I think back to just a few short weeks ago and I wish I could go back there, where things seemed so manageable and hopeful.  I would lay on the couch rubbing my baby belly and envision our whole lives.  Who did I think I was?  Now everything just feels so out of control and just flat out scary.  All these fears and feelings of grief have made today so much worse than it needed to be.  I try to imagine what today would have been like if we never got that diagnosis a few weeks ago.  Would it have been any less crazy, scary and frustrating.  The answer is yes, I would have been the old me, the one with all the patience in the world.  The old me that hasn't had to live with these scary emotions for the past month.  I would have been more than up for the challenge.  The new me, not so much.  Will I ever be that person again?  I feel terrible for even feeling that way.  I know, or I hope that someday soon I will look back on today (and probably tomorrow and the day after) and say "what was my problem"??  I long for that day, the day of acceptance and peace.  Until then I only find it in bits and pieces.  I am scared.  My heart hurts.  I never was very good at accepting change or letting go.  I wish I could just let it all go, accept one day at a time and find the patience I so desperately need right now, but today is not that day.  I suppose I need to give myself time to let things become normal, but the more I try to tell myself that, the more my heart hurts with the loss of what that normal was supposed to be.  I am grieving all over again.  Maybe this will happen in many stages.  Maybe every time something comes up that I had so foolishly thought I had mapped out I will feel like this.  I hope not.  I hope eventually these feelings of grief and mourning will pass.  Is it possible to have some sort of combination of the life I dreamed of and the one I am living?  I don't want this to sound like I love my son any less because I could not possibly love him more.  He is the sweetest little being you'll ever meet.  Just writing that made me feel better.  My homework assignment for tomorrow: Every time I feel a twinge of sadness I will look into my sweet baby's eyes or watch him sleep peacefully and let his light shine on me.  He deserves a Mommy who can be in the here and now, not in the could and would have been. 

My eyes hurt,  my head hurts, my heart hurts.  I will go rest them all now so I can be the Mommy I need to be tomorrow.  Wish me luck.

Quick Update

As much as I'd like to update my blog more often, time is not on my side.  I did want to post a quick update on Baby Eddie's cardiologist appointment tho.  We were, of course, very nervous and worried about this particular appointment.  I still feel pretty uninformed about everything regarding Down Syndrome.  I find myself looking at informational websites and zoning out.  It feels like my brain is unwilling to process most of the info.  As part of the Down Syndrome birth board on my baby site I do see a lot of heart issues, some of them requiring open heart surgery.  This was my biggest fear.  I am not going to pretend to know any of the medical details, I was only hoping that my itty bitty did not need any kind of major surgery.  That being said, here is what happened at our appointment. 

Our heart doctor is located at Phoenix Children's Hospital.  When we arrived I was amazed at how beautiful the hospital was.  There must have been 100 Christmas trees on each floor.  It was colorful and gorgeous.  The worst part, naturally, was seeing way too many sick babies and children.  No amount of Christmas trees and colorful couches can make that sight any easier to see.  Ok, back to Baby Eddie.  He got an EKG and an Echocardiogram.  He was a perfect angel for both tests, even fell asleep during the echo as I rubbed his head.  After the tests we waited for what seemed like hours to meet our doctor and get the test results.  When he did finally come in he took out his little heart model and proceeded to go over all the heart issues associated with DS.  I was trying to absorb the info he was giving us but was just so anxious to hear our results I couldn't.  Finally he tells us that Baby Eddie does have a hole in his heart.  (excuse me for lack of medical terms ~ I'm still learning here, barely) He showed us on his model heart where the hole was and says something to the effect that it's in a good spot.  It's not something that needs immediate attention and he even says there are likely people walking around with such a condition and living perfectly normal lives.  OK, I can now breathe.  Basically, the hole is not small, but not huge and all we need to do right now is keep an eye on it.  We go back in 4 months for another Echo.  It's possible that it could close on it's own, but not likely.  The doctor says if it doesn't close on it's own, he will have to have it closed surgically probably by the time he is 2. Scary, but he says the procedure to close his particular hole does not require open heart surgery.  Instead they would go in with a catheter thru a vein in his leg.  A much less invasive procedure. 

Obviously, this news is great.  I feel like every day gets easier for me.  So far all of his symptoms seems mild and manageable.  Our next big hurdle is finding out how much he will be affected mentally and starting physical therapy asap.  We are hoping he puts on some more ozs by next week when we take him in for a weighing. 

As far as his hearing, it seems like he is really reacting to sound much more than he was initially.  I wonder if there really was just fluid build up.  Hopefully the ENT can get a good reading in March when we go back.    Until then I am content knowing he can hear, even if it's just partially.  Side note, the night before last he was having a hard time breathing overnight and yesterday morning.  We were out food shopping, Dada and Dominick in the store, me and Eddie in the car.  He was so uncomfortable not being able to breathe so I took him out of his car seat and noticed a boogie.  I somehow managed to get a fingertip up his nose to pull out that stinker, well, it kept on coming.  I must have tickled his sinuses cuz as I was pulling it out he sneezed.  Well, let me tell you what came out of my baby's nose looked like something out of a sci-fi movie.  It was a huge, hard ---something.  It was black/green and the size of a peanut.  No wonder he couldn't breathe!!  As soon as that sucker was out he was breathing fine and fell asleep almost immediately.  But, what the heck was that thing!??!  Maybe it was something to do with the fluid in his ear?

Anyway, that's my "quick" update.  Dominick has 4 teeth coming in at once.  The sharp ones too (incisors?) so he is in a lovely mood today.  He is currently running around, jumping on the couch and whining the whole time.  Ah.  Help!!!!

Someone Has A Plan For Us

Wow, has it really only been a few days shy of 3 weeks since my precious little Baby Eddie was put on my chest and I looked into his beautiful, almond shaped eyes?  It's been a crazy and emotional couple weeks, probably the most emotionally trying days of my life.  And this is just the beginning of our journey.  Maybe I should start at the beginning....if only I knew where the that was.  Sure I do, the beginning of this particular journey that we have been chosen for started November 18th 2011 at 8:40 am.  The moment Baby Eddie breathed his first breathe.  After pushing all of one time (!!!!!) I was told that my baby was here! Really, one push? The nurse put him on my chest, umbilical cord still attached, goop and all and I immediately cried tears of wonder and joy.  He was perfect, so beautiful, so different than I imagined.  I had pictured a clone of his big brother, instead I got a gorgeous, fair skinned, light hair and light eyed angel.  Just as precious and perfect as his big brother.  He layed there on my chest, we nursed and cuddled for almost 2 hours before they finally took him to be weighed.  It was a miracle.  I will never forget having that precious bonding time with him.  I remember Daddy wondering "But, what does he weigh?" He was so eager to send out the text message with all the stats to all our friends and family.  Such a proud Daddy.  After that things just seemed to go sort of off track.  Daddy went home to get baby brother and bring him back to meet Baby Eddie, in the mean time it was just  Mama and Baby in the hospital room.  That's when the pediatrician came in to check on him.  I think I may have to take you on a trip back in time now, I didn't want to go there, but I think for this story to make sense I will have to.

Rewind to me pregnant about 13 weeks getting a sonogram, a sonogram that we got the same time for Dominick when they told us he was a boy.  That's what I was looking forward to, finding out if we were going to be blessed with another boy.  What I didn't really fully understand at the time was this particular sonogram was looking for signs of anything abnormal with the baby.  The NT scan.  I wasn't even really thinking along those lines, not until the tech said she saw a few "soft markers" for Down Syndrome.  She said the back of his neck, the nuchal fold, was thickened.  There was also a spot on his heart and his kidneys looked to be retaining more fluid.  I have to admit I was in total denial at this point.  We talked to the dr about our odds, I don't even remember what they were, only that they also took a blood test to give me a better picture of what our odds were.  After waiting  a few days for the blood results the dr called and gave me the odds, I don't remember what they were.  I was only focusing on one number.  He told me that based on my blood work, which came back great, along with the NT scan my chances of having a totally normal baby was 97%.  Those were some awesome odds, everything else he said I just didn't want to hear.  I was looking at that 97% as if it were a sure thing.    We went for a level II sonogram a few weeks later and there were no more markers, the kidneys looked good and we were sent to a cardiologist for the spot on the heart.  We got nothing but positive feedback from every dr we saw.  They all said everything looked great and they were nearly positive my baby would be perfectly healthy.  I spent the rest of my pregnancy convinced that they were right, even tho there was a slight chance that something could be wrong, the bigger odds were that all would be fine.  The blood work ruled out 2 out of 3 possible chromosonal disorders, the only one we had to worry about now was Down Syndrome.  The other 2 were described as really awful, I don't remember what they were called, but I was happy that they were ruled out nonetheless.  I didn't tell anyone about what I was going thru with these tests because I refused to believe that anything could possibly be wrong with my perfect little boy.  I decided I would focus on the positive, and hope that the drs were right and all would be fine.

Ok, now back to the future.  Baby Eddie and I are in the hospital room, waiting for Dada and Big Brother anxiously, when our pediatrician comes in to give Baby his first check-up.  She isn't our regular dr, just one from our practice who is doing the rounds that day.  So, when she brought up that she noticed the chance for Down Syndrome in our chart I sort of got annoyed at her.  Wait, who are YOU? Why are you even bringing this up right now?  I didn't say that, I just kind of shrugged her off - she said she would give him an exam and look for signs.  When she was done she said she saw a couple things that could point to DS.  His eyes were almond shaped (SO WHAT?)  He has a space between his toes (YEAH? SO, are YOUR toes perfect!!?) she mentioned something else that I just honestly did not hear.  I was at this point STILL in denial.  These things to me seemed completely unrelated to anything. So what if he has almond shaped eyes?  Seems so silly.  She even mentioned something about a blood test to get a definite diagnosis.  Again, I shrugged her off.  I sent her on her way and picked up my Baby Bundle, looked him over and decided she was wrong.  He was perfect.  He was beautiful.  I can't tell you how long I sat there looking at my sweet baby.  Then I hear something in the hall - it's big brother! YAY they're here!!  I completely forget about what the doctor said or that she was even ever here.  We introduce Baby Eddie to Dominick, I've envisioned this moment a hundred times.  Dominick's first reaction was "OOOH Boogie Bulb", which was in the baby's bassinet, he didn't even see the baby.  Ha.  Too funny.  We snap some pictures and ooh and aah at Baby and Big Brother.  We get a couple visitors.  Everything is perfect.  All the while Baby Eddie is sleeping.  He finally wakes up and Daddy is sitting with me when he says " I dunno hon, there's something with his eyes"  I immediately tense up.  What am I not seeing?  This is when I remember, Oh, yeah, the dr was in here.  I tell him that she mentioned that and that it could be a sign of DS.  Naturally, he was upset.  Why hadn't I told him earlier?? Why did he have to say something to be told such an important message?  I couldn't answer him.  I just didn't even want to consider it, I put it as far in the back of my mind as I could.  Then when he said that I realized "Shoot, maybe I should have told him this earlier!"  Ok, this is when things started getting very crazy for me.  Of course by this time the dr was gone and we had all these questions, well, not we, but Steve did.  I'm still not accepting this as a possibility.  Dominick and Daddy go home for nap leaving me with the Baby.  Honestly, I am not even sure what happened when at this point.  I know we were supposed to leave the next day, Saturday, at 11.  But when they take his biliruben (jaundice) levels it's too high for discharge and we have to now wait to be tested again at 6 pm.  In the mean time they give him a hearing test, which he fails.  Twice.  This is just all too much for me.  I am about to explode.  What is going on? Can my baby not hear me? Is he jaundice? Does he have.... no, this one I can't even bare to ask myself.  When the nurse comes in to tell me the dr wants me to wait for another biliruben test that evening I ask her if I could possibly speak to the dr again.  I want to ask her about the blood test, when it can be done, how long do the results take....The nurse tells me that the dr will tell me to call the office on Monday and is there anything she can answer....I reluctantly tell her my DS blood test question and say the dr said she saw a few signs of DS.  Then she tells me that she, the dr and the other nurses were discussing it (WHAT THE F!) and took notice of the signs too.  The signs that I am still to this day blind to.  How dare she and these other nurses be looking at my baby and making such accusations! I was so upset.  The nurse tells me that the blood test for DS is not taken at birth, but later on when the baby puts on some more weight to be able to withstand it.  I take her at her word, tell Steve what she says and we decide to wait and talk to our regular pediatrician Monday at his 2 day checkup.  Sheesh, I've been in the hospital for just one day and I am so ready to just go home.  Dominick is having trouble sleeping without me and I just want to go home and be a family of 4 already!!  Now, finally 6pm rolls around and the nurse takes my baby for his 2nd biliruben test.  It comes back just slightly out of the risky zone and the nurse tells me to start packing!  I text Steve to come get us!  I'm so excited to get the hell out of that place.   I go into the bathroom to start changing and she comes back in saying "I hope you haven't called your husband yet"  The dr wants to keep baby overnight and check his levels again in the morning.  Um, NO!  We are leaving.  I call Steve and first thing I hear is Dominick in the background singing "Mama, Baby" over and over, he is so happy we are coming home.  I breakdown.  I'm hysterical on the phone, Steve is threatening to go all "John Q" and take me out home regardless of what the dr says.  Now the nurse come back in and says she called the dr and she said I can go home.  Ok, this is just all too much for me.  My head is spinning.  Steve and Dominick show up a little while later and we are all very eager to make our escape, it's now almost 9pm.  I was such a mess that I didn't even change Baby Eddie into his Coming Home Outfit that I spent months fretting over.  The car ride home was AWFUL.  Dominick next to the Baby trying to poke his eyes.  When that doesn't fly he decides he wants to throw a foot in the Baby's seat.  I try to reason with him, no go.  I try everything...nothing works and we both just end up hysterical in the backseat.  We pull up to our house and all I can think of as I cry my eyes out is "What is going on?" "This is not the homecoming I dreamed of"  That night didn't get much better.  Dominick was in rare form, he was as bad as he's ever been.  This is to be expected, of course, but we are both just so emotionally exhausted that it is amplified.  Nothing is certain at this point and all we can do is wait to see the Dr Monday.

Monday:  The Dr comes in, looks the baby over and asks if we have any concerns. . . um, yeah.  So we bring up the dreaded words that I can't even say.  He looks him over again and says he sees a few signs of DS and would like to order the blood test.  I mention that the nurse said it can't be done now, that he is too small.  Well, he was not happy to hear that.  He said she lied to me.  I'd like to believe that she was just misinformed, but that doesn't make it much better.  The important this is we can get the test done ASAP, as in NOW.  We leave the dr's office in shock.  Crying all the way home, pretty much crying for the next 10 days straight.  10 days.  That's how long we had to wait for the results.  This was Monday, we had to celebrate Thanksgiving not knowing and then still wait another week on top of that.  I spent these days in a fog.  I refused to do any online research, I didn't want to scare myself for no reason.  Let's wait for the good news then we can go on with our life without this weight on our shoulders and our hearts.  Every moment of the day felt like a week long.  I cried every night and tried to stay positive during the day for Dominick.  I didn't want him to see me upset, although it did happen a couple times. 

Thursday:  We drop off Dominick at Mama Mona's house, he has proven that he can not sit still in his stroller for more than 3 seconds and we just wanted to be able to get the results without having to worry about him.  Thank God for Mama Mona~!  We arrive early to the dr's office.  On our way in an adorable, bubbly little girl comes running down the corridor . . . she had Down Syndrome.  I turn and look at Steve and something in my heart broke.  I felt this was some kind of sign. We waited for the dr for what felt like hours.  When he came into the room my heart stopped and I looked down at my sleepy little Angel, all wrapped up in his blanky in nothing but a diaper - he needs me.  He needs me to be strong for him.  This is the moment that will define the rest of our lives.  Baby Eddie has Down Syndrome.  It's confirmed.  At first I am numb.  Then the dr starts talking about his other patients, one of them being the little 5 year old girl we just saw running toward us down the corridor.  He tells us we will need to start therapy as early as 6 months, if not earlier.  He tells us he has a few DS patients and each one varies in their strengths and weaknesses.  The 5 year old is his more "normal" patient.  She runs and plays and loves to go to the park.  He also has an 18 month old who can't hold his own weight.  Then there's the 13 year old who can't, or was it won't? speak.  We won't know what Eddie's strengths or weaknesses are for a long time.  There is no way to detect what this syndrome will effect.  This is the hardest part for me.  Until we know we have to treat him as normal as possible.  And he is normal, he's a newborn - itty bitty little boy who needs nothing more than to be fed, changed and loved.  That part I CAN handle.  Today we had an appt with the ENT, they could not get a reading on his ears because his ear canals are so tiny.  So for now we still don't really know how much he can hear.  We have to wait 3 months and hope it's just fluid that made him fail his first 3 tests.  The third test showed that he could hear from his right ear and about 50% from the left.  Today they say there was no reading in each.  I am hoping that it was again just that his canals are so little.  I mean, can you hear one day then not the next? Monday we go to the heart doctor to check his tiny heart.  I will hold my breathe until then - pray and cry and plea that there is no hole and no other complications.  I cannot bare the thought of my baby getting Open Heart Surgery like so many Down syndrome babies have to have. 

I have joined a DS board for support and it's been really good, but some days I just can't even read other peoples stories.  It makes it too real.  I am still very much in the middle of the process of acceptance.  I go thru so many emotions every day that I can barely keep up with myself.  Some days I am so overwhelmed with grief that I don't even want to get out of bed.  Then the next I feel like everything will be ok and I can do this.  I can, I know I can.  We can, together as a family.  I feel guilty for feeling sorry for myself.  I feel terrible for feeling like I was robbed of this dream I had.  My two boys - playing sports together, going to high school together.  I thought for sure they would be like twins.  All of that has been taken from me.  I know that the alternative, the reality of what my boys will be like together will be just as special, I know that in my heart...I'm just still in the process of letting that little boy go. 

The future for me right now is a scary place.  So scary that I can just lose it thinking about it.  So, for now I will follow the advice of many amazing friends and family.  One day at a time.  Concentrate on getting through today, tomorrow can wait.