What A Day

Today is a good day, but can I just rant for a second here?? I normally try to take everything in stride, but this morning is just not my morning!

To start, my poor Little Man rolled right off of the bed in the middle of the night. (Yes, I’m back to bed sharing!) I can’t believe it. I don’t even know how it happened, but I swear my maternal instincts woke me up before he even hit the floor. And he was in my arms and nursing before he had a chance to cry.
On top of the midnight mommy fail, Chazz had a very important eye appt at 8:30 this morning. I woke up at 8:28. {oh sure chazz, you choose today of all days to not wake up at the buttcrack of dawn!} But I managed to get us all together, out the door, and to the appt in 20 minutes. Whew!

Ok, vent over, on to the good stuff!

The appt went well! It was a follow up to the original ONH diagnosis, and we discussed the MRI and his progress. Chazz is tracking a lot better with his eyes. He does seem to have periferal vision in his left eye, which is a relief! The MRI showed that he does have a smaller pituitary gland, so we are keeping close tabs on his growth. Since getting a 6 month old to cooperate for an eye exam is next to impossible, we won’t know be tackling that until his next eye appt at 1 year old. At that point, we will know how well he can see, if glasses could help, and a little more about how it will or will not effect how he learns.

I am suprised at how well I handled the appt. No tears, I remembered all of my questions, and it offered a lot of closure for me. He doesn’t have the brain deformities that are often hand in hand with ONH. It’s like a huge weight has been lifted, and there is somewhere to go from here. I’m just thankful to have my happy, healthy, handsome boy!

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Break Out The Pabst, er, Bubbly!

This week has been one big celebration!

The doc called with Chazz’s MRI results, and (drumroll please!) it is good news. There are no tumors or pockets in his brain, and no defects! Both of his optic nerves are underdeveloped, as they thought, but things could be so much worse. I read that 6 out of 10 ONH babies have a midline brain defect, and am greatful that Chazz is in that last forty percent!
Along with the optic nerves, his pituitary gland is on the small side, so we will be seeing an endocrinologist to check his hormones. If it is also underdeveloped, Chazz will be given whatever hormones he needs as supplements. All things considered, this is a huge relief. Google was really starting to get me down! There is so much more to this condition, that we thankfully won’t have to deal with.

It’s nice to know what we are facing. That there is a plan of action to get through this chin up, and Chazz will be our happy, healthy little man, no matter what!

The Dreaded MRI

Well, Chazz is out. He did good this morning, a lot better than we expected. I thought he would be screaming from 2am on! He fussed at first, but Daddy is so smart and put on cartoons. He was as happy as a clam all the way through check in. Chazz even fell asleep on Roman’s shoulder until it was time to hand him over to his nurse. Now it’s just waiting.

15 minutes till we get to see him!!!!!!!!!!

Aaaaand they LIE!!

Finally got to see my lil man. He was one fiesty mess until I fed him. He had a little trouble nursing at first, he’d pause to yell at me and then continue eating. Holding him is the best feeling ever! The sight of him wrapped in the heated hospital blankie reminds me of when I first held him. There is something about the smell of those blankets that takes me back. I’m just glad he’s here, he’s somewhat content, and he’s ok!

It’s policy to stay for an hour after so we are just now getting to pack up… Chazz is oh so sleepy! He’s able to flirt with the nurses, so I think he is going to be just fine!

We’re home and taking a family nap. All we have for discharge instructions are to feed on demand (duh!), let him sleep (really??), and lay him on his side in case of vomiting. All three of us are barely able to keep our eyes open, so night-night!

Just woke up, and I’m still tired! We all got to cuddle and catch up on some sleep. Chazz is his normal, playful self. I wonder if he even remembers?!

Here’s the “damage”-
*3 pokes from attempts at an IV-in his head, and both feet
*bandage on right foot from IV
*a cough- maybe from the breathing tube shoved in his lungs
*sticky gook from monitors on leg, chest, and chin
*sticky gook and red from eye covers on face

We will have a follow up appt with our pedi to go over the results, so even more waiting! It is so nice to have that out of the way though. Soon we will know the extent of things and what all we’re dealing with. It will be nice to know where to go from here…