I think I’m finally ready to do a blog post.

You’ve all been so patient because I can see how many are checking every day for a new post, but to tell you the truth I have just not been ready to write about what’s been going on.   But I will try tonight.  Be patient with me because this post might be all over the place thanks to all the meds I am on right now.  My mind is a bit fuzzy and my vision is blurry so even seeing the screen isn’t easy.  But  like I said, I’m going to give it a try.

* If you follow me on Facebook or on Instagram then you already know the story, but of course as I blog about it there will be more details and some photos, which is why I love blogging.  I write my blog more for me than for any other reason, as a way to document my life and something that I can read back on when I am older, or my kids and grandkids can read.  But if along the way my blog happens to help someone or inspire them in some way, then that is a bonus.  So that is why I share our journey with Baby Aaron.* 

Okay, so where did we leave off?

Oh yes…the “bump in the road” — that was my blood pressure.  Yeah, well that “bump” turned out to be a major.  They day after that post was written,  the lab called my OB at around 10:00pm at night to tell him that my 24 hour urine test showed an extremely high amount of protein.  So my OB called me at about 10:05pm and told me to get to the hospital right now so they could observe me, but not to panic or rush (and I didn’t, because I’m laid back like that)  but to just get to the hospital as soon as I can.  So, I hung up with him and started packing a bag.

A few minutes later I called Rich.  He was on duty at the fire station which is about an hour’s drive from our house.  I called his cell phone and he didn’t answer.  So I then called the station line…which I never do…and he answered the phone in a groggy voice (by this time it was around 10:30pm)  and this is how the conversation went:

HIM:  Hello?

ME:  Hey, you sleeping?

HIM: Yeah.

ME:  Well, I’m going in to the hospital right now because they want to “observe” me because my urine is too high in protein, and you know, my blood pressures and all that.

HIM:  You’re going where?

ME:  The hospital.

HIM:  Tonight?!! 

ME:  Yes.

HIM:  You mean now?  Right now?  Are you kidding me?!!

ME:  Right now.  Tonight.  As soon as I can get there, the doctor said.

Then there was a bit of silence.  And I know how busy his work is, and he hardly sleeps when he’s at work. So the fact that he probably just fell asleep after a very busy day,  and  here I’m calling him with this kind of news, made me feel a little bad for him.  For him to have to leave work at this hour, to drive an hour when he’s sleepy, for something that might very well turn out to be nothing just didn’t seem necessary.

ME:  Look.  I don’t really see why you need to be here.  My mom will drive me.  They will probably just keep me overnight, anyway.  They just want to “observe” me, is what my OB said.   You don’t need to be there to observe them observing me.  I’ll just call you in the morning.”

HIM:  No, don’t be silly.  Of course I’m going with you.  I’m going to leave now.  I’m just thinking…you know…who I need to call and stuff like that,  for the station.  Plus, I’m just waking up.  But I’m leaving now.

So, I waited for him.  He got home at about 11:45.  We went to the hospital (just a two minute drive) and they had me admitted and in a room and hooked up to all kinds of monitors and IV’s in no time at all.

Here I am being “observed”.

And yes, I brought my own pillow from home.  Doesn’t everyone?

They took my blood pressure right away and then had me lying on my left side real quick because my blood pressure was very high and also the baby’s heart rate kept having decelerations.  I wasn’t even in labor and he was having decelerations.  So on went the oxygen mask.  I still was pretty chill.  I was sure they had some kind of meds they could give me and then I’d be sent home in the morning.

But it wasn’t going to be like that.  Before I knew it,  they had a doctor in the room with me.  He told me that because of Aaron’s heart having decelerations plus my blood pressure was in a dangerously high range, my OB was called and he said it’s safest for me and the baby to have the c-section tonight.

That was something we weren’t expecting.

So the doctor then said to me,  “Okay, so your doctor is on the way right now and should be here in 20 minutes, so we will prep you for your c-section now and when you are ready, he should be here.”

ME:  He’s coming from home?

DOCTOR:  Yes.

ME:  Well, what if he was sleeping?  He might be all tired and not awake enough to do this.

The nurses and that doctor laughed.  I think they thought I was making a joke.

So then it hit me.  They were going to take Aaron out.  In just 30 minutes or so, he would be OUT.   I didn’t feel ready!  I was supposed to have three more weeks with Aaron in my belly!  Those three weeks were very important to me!  I wanted more time with him!  In my belly he was safe with me, my body protected him and supported him, but once he was OUT….then we enter the unknown.  My worry has always been what would he be able to do for himself once he no longer had my body supporting his life?

But now all of a sudden by body was NOT the safest place for him.  And he had to leave it, whether I was ready or not.  I was completely bummed out.

*That’s not even the right word to define how I felt.  But remember my brain is a bit fuzzy right now from the meds I’m on, so that’s the best word I can come up with.  Sorry for sounding like a twelve year old.*

So they got me prepped and ready for surgery.  In the photo below I am getting ready to be wheeled into the OR room.  Notice that both my arms have IV’s hooked to them?  Oh man, I hate IV’s.  Having one in each arm really gave me the willies.

You know,  I just realized that this photo of me in the wheel chair is the  very last photo I have of myself with Aaron in my belly.  I am exactly 36 weeks.

Don’t I look happy?  Does this look like the face of a momma looking forward to meeting her son?  I should have been happy and excited.  But I was worried for him. My face here says it all.  I was just so worried and disappointed. Yeah, that’s the word.  I was disappointed that my body was doing this to me.  To us.  I felt bad for taking Aaron out early.  He deserved all the time he could get living inside of me…because once he was on the outside, it was unknown how long he could live.

And here I am as they are starting my c-section.  Rich was there right beside me.   I had always heard that you could feel them “tugging” and all that, as they got the baby out.  But I hardly felt a thing.   I had no idea they’d even started.  I finally asked them, “Let me know when you start cutting me….”  and my OB said, “Well, I’m cutting into your uterus  right now…so you’ll see your baby any minute.”  

And sure enough, he was OUT and free from me in the next minute.

Aaron was born on Wednesday, November 4th at 1:04am, at 36 weeks, and he weighed 7 pounds 1 ounce.  As soon as he was out, the doctor lifted him up quickly so I could get a look at him.

And this is who I saw…

My Sweet Boy.  The one who has been kicking me all these months.  The little guy who had me praying night and day for his safety.  The one so many others have been praying for.  The tough little fighter who made it all the way to 36 weeks despite the statistics that said he likely would not.  My sweet Aaron was here!  Oh, my heart.  You know, there is nothing – and I mean nothing-  like the joy a mama feels that first time she sets eyes on her new baby.  All my fears for him, in those short seconds, completely went away as I just looked at him for who he was: my baby boy.  Not a Trisomy 13 baby.  Not an “incompatible with life” baby.   But just my beautiful baby. He was my baby boy, and only that, and my heart just exploded with love for him.

I only got a quick glimpse of him,  but my first impression was that he looked perfectly healthy!  Not really any different than any of my other newborns.  Yes, I noticed his cleft lip right away, but I also noticed his perfectly formed arms and legs and his head shape was beautifully round and he had chunky little thighs and chubby little cheeks, and he looked very grumpy as if he were being lifted out of a very warm and dark place straight into the sun (ever notice how bright OR rooms are?)  and I saw all that in about two seconds and then he was quickly whisked away from my view and went straight to all the doctors and NICU nurses who needed to tend to him.   They  had him about 15 feet away from me, but yet I couldn’t see them because the screen was still up because of my c-section.

I smiled and I was happy.  It’s all caught on video. Me smiling big.  I was even laughing a bit, just a big smile on my face.  A big relief for me.  The c-section went well, my baby was here, and he looked pretty darn good.  I was happy.

But then I listened.  And listened.  Lots of people talking, but I didn’t hear my baby at all.  Where were his cries?  It had been enough time and they should have cleared his lungs out by now.  Why didn’t I hear him?  Rich was still up by my head and I told him to go to the baby to see how he’s doing.  I told him to take photos.  So he did.  But this was all he could see.

Just a bunch of doctors and nurses surrounding our baby.  Rich didn’t want to get in the way, so he stood there, took a few photos, then started videoing.  But you couldn’t see the baby in any of the photos or videos.   I was still on the OR table being cleaned out or stitched up, or whatever they were doing at the time.  And I just kept trying to hear my baby make  sound.  As each minute passed without hearing him, my heart sank further and further.

At one point I did hear a few sounds from him, tiny little sounds — his attempt at crying.  I wish we had those sweet sounds on video, but we don’t.  I can still hear his little sounds in my head, though.  I hope I never forget how he sounded.

After about 10 minutes, Rich came up to me and said,  “He’s not breathing on his own.   He’s trying but he can’t get enough air.  The doctors don’t know why. They’ve been bagging him and trying things but nothing is working. They keep asking me what we want to do.”

I knew what they meant about “what do we want to do” — they wanted our permission to stop life saving efforts.     I looked at Rich and I asked, “Well, why can’t he breathe?  Do they know why? Is it a brain-thing or something else?  Tell them to keep trying.”  

Rich looked at me, and I knew by his expression what he was thinking.  See, we both had agreed that if Aaron was born without the ability to breathe on his own then we didn’t want him dependent on machines to live.  But I wanted to give him every shot at life, so a little help right after birth was something I was willing to do for him, especially if they didn’t know the reason why he wasn’t able to breathe on his own.

Rich went back to them and told them to keep trying.

And so they did.  For another ten minutes.  And then Rich came back to me, this time with tears in his eyes and his voice cracked as he spoke.  “He can’t breathe on his own.  There is something wrong with his airway or something.  His tongue keeps falling back into his throat, and his palate is very malformed and they can’t get an airway for him.  They need to know right now what we want to do.  They can’t keep bagging him like this any longer.  They need an answer.  Now.”

And I remember just lying there, with my eyes staring up at the ceiling.  And I was thinking,  You gotta be kidding me.  This is all we get? After all these months, after all the doctor appointments and ultrasounds and meeting with so many specialists and rejoicing about his “strong, perfectly formed heart” and after all the months I went through with all the emotions and all the hope and all the prayers, and he’s been so strong and such a fighter along the way…and this is all we get?  For him to die just 15 feet away from me, without ever being held by me?   not ever meeting his siblings?  We don’t even get one hour with him?

There I was on an operating table completely numb and paralyzed from the chest down, and my newborn baby boy was just 15 feet away from me.  He needed me and I couldn’t even go to him.  I couldn’t even hold him. This was my worst fear for him, and I was so angry that it was coming true.  And it sounded like his not being able to breathe was due to some kind of obstruction, not for the lack of brain function.  It just didn’t feel right for me to let him go like this, when he could possibly be helped once they could exam him further.

I was still staring up at the ceiling as I answered Rich’s question.  In a very calm and quiet voice I said to him, “I didn’t go through nine months of carrying that baby for him to die in a bright OR room surrounded by strangers, without even meeting me, without even being held by me.  I want some time with him.  I deserve that much.  He deserves that much.”  

Then I turned my head and looked at my husband.  We locked eyes and I said, “Tell them to take him to the NICU and intubate him.”

“Okay.” Rich said, and then he walked away and told the doctors what we decided, and he and Aaron’s doctors and nurses  took Aaron out the door and headed towards the NICU.

And I was left there, still on the operating table getting stitched up and stapled and whatever else they do.  The room was quiet.  It just felt so quiet and empty.   I suddenly realized that I had no husband with me, and Aaron wasn’t with me, and I had no way of knowing how he was doing.

It was an awful, helpless feeling.