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Sunday, November 14, 2010

The Arrival of Split Pea

September 2, 2010

I'm not going to write a long birth story because, well, I don't want to.  The labor and delivery was uneventful.  It was similar to my others, but longer.  I was induced about 8 am, but Split Pea didn't arrive until about 4 pm (I have the exact time somewhere, but things are a little disorganized these days).

We held him for quite a while after birth and finally the nurses got their hands on him so they could take him to the well-baby nursery and check him out.  I hadn't seen him for over 2 hours and asked my sister to see if she could find out what was going on.  The next thing I knew, my pediatrician entered the room and delivered the life-changing news.

Her news was a laundry list of things that were wrong and ranged from his extremely low blood sugar (19!) to his weak femoral pulse (which she chose to tell me could indicate a problem with his aortic arch and may require heart surgery).  (For the record, none of the laundry list was as dramatic as she'd made it sound.  I'm still angry about how it was all presented to me.)  Needless to say, once she left, I lost it.  Hubby had left the hospital to play in his weekly poker game (when he left we all assumed everything was fine), and it was just me, my sister, and my nephew.  I freaked out (I think silently, but was clearly bawling).

My sister was amazing.  She called hubby and told him to get back to the hospital and asked my mom to come back too.  About midnight, they wheeled me into the NICU so I could see Split Pea for the first time since after he was born.  He was under an oxygen hood, had heart leads, a temperature monitor and a dextrose drip.  I could only touch him.  I hated being in my post-partum room that night, all alone.

The next morning, I went to the NICU again and this time he was on a nasal cannula, off the oxygen hood, but still on the dextrose drip.  I got to nurse him (or try), and then feed him a little bottle.  It was wonderful holding him, and I held him for as long as they would let me.  The NICU even allowed the boys to come visit, and they were immediately smitten with their new brother.

Small Fry giving his new brother a tiny kiss

Split Pea had ultrasounds, chromosomal tests, blood tests and most importantly, an MRI of his brain over the next day.  The results showed that his pituitary gland never completely grew together and therefore wasn't functioning properly.  The official diagnosis is "Panhypopituitarism", aka "Pan Pit".  The pituitary gland is the "master gland" in a body that sends out signals to all the other glands.  Everything downstream is functioning well, it's just the master gland that is not working.  

Once we got the diagnosis and met our new best friend, the endocrinologist, we started meds to stabilize him.  (Side note: The endocrinologist took a few days to talk to us, and when she first met us the first two things she said were, "He's going to be fine", and that she took a few days because she wanted to have ALL the information before talking to us.  THAT was when I knew she would be an amazing doctor for us).    He was able to leave the NICU after 6 days.  Although I wouldn't wish the NICU on my worst enemy, the nurses and doctors were absolutely AMAZING.  I cried a whole lot there, and they were always willing to offer up a hug, an encouraging word, or just make me laugh.

We left the hospital after filling more prescriptions than I'd ever filled for both the other boys combined.  When we left, Split Pea (aptly named because the pituitary gland is pea-sized in adults, and his is "split"), he was taking hydrocortisone three times a day.  I was also testing his blood sugar with a glucose meter before each feeding.  We were given dozens of things, including an emergency injection of glucagon in case of hypoglycemia, and an injection of Solu-Cortef, in case he couldn't ingest his dose of hydrocortisone. 

In the weeks following his discharge, we visited a doctor or lab every single day.  We had visits with the regular pediatrician, the urologist (he received testosterone injections), the endocrinologist, and visited both a regular lab and a pediatric hematology lab for blood tests. 

I had a whole different plan of how things were going to go with our Split Pea, but I think he just wanted to make sure that we never forgot about him!

1 comment:

curtsgrl said...

I'm a lurker on the bump and read your blog off and on. My DS was 3 days old when he was admitted to the PICU with a blood sugar of 9! He stayed there for 10 days before he was discharged. He's been seeing a geneticist since then and while it looks like his getting sick was just an unfortunate occurance I know how draining having such a small baby in the hospital is. I'm glad you have a diagnosis, as we still don't and may not get one, and that you have found your new normal. Your boys are precious and I believe that God doesn't give us what we can't handle. You meant to be this little's boys mom because God knew you could handle it.