Thursday, February 16, 2012

Dear Button,

 We anxiously waited for you a year ago.  We knew you were healthy according to the ultrasounds, but we just couldn't help but be scared after Jamie.

I am so sorry that everything about you is so intertwined with your sister.

 We, like always, didn't know your gender ahead of time!  Between tears from hearing your LOUD cry and laughter from hearing you were another boy, the anesthesiologist was concerned about my mental health.

Dr. G raised you high, reminiscent of Lion King. 

 You were a nice hefty weight...but still smaller than you little big brother, Bunny.

 However, within minutes, I could hear alot of suctioning and Daddy didn't return to my side very quickly.  Soon...he was rushing to me and saying they were taking you to the NICU.

 A little Transitional breathing problems.  Normal for c-section babies that don't get the good "squeeze".

 When the neonatologist wheeled you over to me so I could touch your hand, she recognized me.  
Her brisk attitude turned into a very warm, loving, reassuring tone.  "Mama, I remember you (oh Jamie, if you only knew how you touched others!).   He will be great.  Just a little oxygen and we will have you reunited as soon as you both transition."

I was anxious.  I had Mr. Boss leave me in the recovery room to keep checking on him.  He said he was really breathing hard and making alot of noise.  By the fourth trip, he said he was doing well.

We were excited that he might be able to come to the room since I was being moved to my room.

After getting settled in my room, the neonatologist arrived bedside with papers in hand and a clipboard.  Within minutes, the pit in my stomach became wide and cavernous.

Baby Button needed a platelet transfusion?

On routine labs, they noticed low platelets.  Apparently, he was not just in need of a transfusion, but it was LIFE THREATENING.  His levels were WELL below the "must transfuse" level.  It was dropping drastically every 30 minutes. 

The worst part?

They didn't know why. 

 The concern for his breathing was the LEAST of his problems.  We couldn't believe we were signing permission for our child to receive a blood product transfusion.  Unfathomable.  And to not know why?  Terrifying.

 The other worst part?  I wasn't able to go visit him.  I was stuck. 


 Thanks to Daddy's iphone and me sending him with our camera, it was the only way I could see him and get updates.  It was torture.  I was helpless.  

Me, a nurse, that spent a year working Nursery/NICU...and I was stuck in my bed.  Due to a mess of shift changes on the postpartum floor and the NICU, his transfer from the transitional NICU to the main NICU. Tests that we were not allowed to be there during...I was never going to see him.

I spent the whole afternoon, trying to get my legs to work right with the epidural to move to a wheelchair.  Not to mention trying to find a nurse that would accompany me and all of my IV drips.

The boys finally arrived to the hospital.  Heartbroken that there was no baby to visit in my room.

Luckily, it was "SIBLING NIGHT" in the NICU.  Wed and Sundays only.  So I sent them with Mr. Boss and Grandma to visit him.  It was possibly the only chance.  
I am not going to lie, I was terribly jealous!

 At 10:30 pm...I FINALLY was able to go up there! 

His poor puffy face from the transfusion, IV antibiotics, and extra fluid.

 I adored how he peeked open his eyes when he heard my voice.  The NICU nurses said he wouldn't open them and they all came over to see his big brown eyes.  

And then he smiled at was magic.

But we were still terrified.  Congential leukemia, bleeding disorders, and you name it were tossed around.  I was quite possibly going to still go home empty armed or worse yet, watch my child being tortured daily by some unknown disease.

The one condition that DID make sense, was NAIT.  A condition where my body's antibodies attack my children. Specifically their platelets.   But it was something that would have been seen in our firstborn, NOT our fifth child.  

Labs from him.  CT scans.  Ultrasounds.  Labs drawn from Mr. Boss and I were sent to some mysterious lab in Wisconsin.  The results not to be given to us for up to 3 weeks.

I was an overachiever.  I walked more than any other c-section patient on the floor, according to staff.  I paced the floors with my IV poles in tow, enormous pain, but it was the only thing I could do because they would kick us out intermittently to do testing or shift changes.  

He started struggling with feedings and ended up with an NG tube.  Again, torture.

We prayed.  We asked his big sister to watch over him.  The NICU nurses could tell I was getting frantic. 

 On the second day/night I was ANGRY.  


I sobbed.  I was once again ALONE in my room with no baby.  I thought I was not going to bring home another baby.  Not even a phone call from our priest comforted me...

That night, the NICU nurse let me have him in a kangaroo pouch.  Bare body to my bare chest.  I literally felt all the pent up emotions drain from my body during that skin to skin moment.  He became jelly and started to coo.

The third day?  I pushed.  I forced the baby to eat more of his bottle. 

 I stalked him in the nursery.  I made sure I was there for every single feeding.  Every time the neonatologists snuck in (I started figuring out when that was...former nursery nurse, remember?) I would ask questions.  I think I started to get on their nerves.  His platelets stayed strong.  His feedings started getting better (despite the NICU nazis wanting to feed him several ounces every two hours...I had to remind him he may be a HUGE elephant compared to the preemies...but he was still a brand new newborn!)

Finally, the head neonatologist yielded on the fourth day, the day I was to be released.  

I think he knew I was not going to ever leave.  

As long as I promised to take him to our AWESOME pediatrician and do regular lab work, I could take him home.

We QUICKLY changed him, checked me out.  I kept whispering to him...shhh...don't fuss....we don't want them to actually notice us leaving...okay?  They might change their minds!

We were FREE!!!! 
 We didn't call and tell my mom and the boys until we were in the car on our way home!

The boys had not seen him since the day he was born!  Only the pictures we had on the computer!

 Excuse my appearance...I was exhausted from the stress!

 Bunny just could not believe that his baby brother was finally home.  The ordeal was as stressful to them as it was to us!

 Butter is holding him and whispering, "I love you.."

 Bean couldn't stop talking to him with a big grin!

 And Butter was completely over the moon.....

And Button passed out in the most unbelievable sleep....he was finally home.

After a few weeks of many doctor visits, lab draws, and worry...we had the diagnosis of NAIT confirmed.  After all of my blood was out of his system, he no longer had to fight the antibodies!

And we were once again, in the books, for a rare case.....go figure!

But a year later....he is simply.



  1. I had no idea you went through all of this! Just awful. But what a sweet little one! Love that last picture. Today was Will's due date a year ago.

  2. I had a long comment typed but I have just deleted it and will replace it with ....

    Hugs, from one mother to another xxxx

  3. a baby is a fighter ...A big birthday kiss

  4. Birthday hugs to Button! What a sweetie! So glad everything turned out well.

  5. Tissue please! Oh my goodness so glad it was a happy homecoming. :) Love all the pics!

  6. A belated Happy Birthday to Buttons! He deserves an extra day of celebrating. Thanks for sharing such a moving story. I'm so glad Buttons is here to enjoy his birthday.

  7. I need the tissue box, too.
    What a little lovie.
    Happy birth Button!

  8. I loved hearing his story, Heidi. I cried all the way through it. So happy he's here and celebrating his first birthday with his beautiful family. LOVE all the pics- so precious. Happy First Birthday, Beautiful Button!!!!!

  9. Heidi, my heart just hurt for you reading this. It is beautifully written, and made me feel a taste of the anxiety you must have had with such a scare at Button's birth. I knew some of this story, of course, but your full narration complete with pictures... well, I'm just sorry you had to go through that but SO grateful all turned out well!! He IS such a joy!!

    1. Thanks Harriet! I am so in love with this guy and I am so glad that is over now. It really did cause extra anxiety this year, but I finally felt like I was in a good place to tell his story!

  10. What a beautiful post. Thank you for sharing. You look beautiful in those pics, totally in love and elated to be with your children....


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