Some good moments, some bad moments

Wednesday just before we got admitted.


It's been a long couple of days.Your getting better...and your not. We see small periods of our happy sweet baby followed by long periods of you being just miserable.

As good as it is to see you feeling better the times when your not are like acid eating away at my stomach. I wish I would could just take all the bad spells from you.

On Thursday morning Dr Bailey and his NP Jennifer came in and opened your wound to drain it. They said they didn't see as much puss as you would have thought with as swollen and red as your incision was. You are on two antibiotics. Vanco and another one I can't remember.

When we got in here Tuesday night they held your Lasix and Inderol to make sure you weren't dehydrated or otherwise having a bad reaction to it. They also got a PICC line in your left arm but unfortunately it's not allowing us to draw blood from it so you still have to get poked for your labs.

Strangely all your labs came back fairly good.
Your white blood cells are elevated (which can be a sign of infection) but are actually lower than when we got discharged Monday. (makes no sense at all)
Your BUN and other labs that would normally show dehydration are normal. (this is the hardest for me to understand).

So all Thursday you were showing improvement. Long periods of being awake and even playing
so they restarted your lasix and inderol.

Thursday night all to Friday morning you were miserable. Back to the lethargic, constantly crying baby desperately sucking on a wet rag.

So Friday morning I wouldn't let them give you your dose of lasix till I got to speak to the Dr's. I was only expecting to talk to Jennifer, Dr Bailey's NP, but both she and Dr Baily came in.

I explained to them that I was 100% convinced, despite what the labs said, that the lasix was dehydrating you too much and making your miserable and that I didn't want you to get it anymore.

Dr Bailey explained to me that because the left side of your heart had gotten enlarged with the stenosis you needed it to compensate for your left side of the heart not working as well.

I explained how I understood how a diuretic was necessary but wanted to at least try something different. I told them I didn't listen to my instinct before and the result was you re-admitted to the hospital with a bad infection and I wasn't going to do that again.

I have to say I really felt that Dr Bailey listened to me. He didn't seem sceptical or dismissive but really took into account what I was seeing and was willing to try a different medicine to at least see if it was the lasix.

His NP Jennifer looked a little more doubtful but when I pulled the "I didn't trust my instinct" card I won her over.

So you didn't get a diuretic for all of Friday, and all though you weren't 100% better you did look show a lot of improvement. Your nurse Mark even admitted you looked tons better without the diuretic.

You love playing with my phone. Mostly you just want to eat it.

You look surly but you were actually happy and playing a bit.

I tried to get a pic of your wound but this is the best I could do as I was holding our hand and only had a second since we were in the middle of a dressing change.

Yay! We got a pic of your nurse Corey. We love her!

On Thursday your aunt T came to visit. You were in love with her t-shirt for some reason. You kept pulling and pulling on it trying to get it in your mouth. You would grunt to let us know how hard you were working and how unhappy you were that you didn't get to chew on it. Aunt T was joking and saying she was going to get you a yellow T-shirt for you to chew on for your birthday.

The highlight of our day on Friday was that brother got to come and visit you. He even brought you a card that he drew.

In all honestly he walked up to your crib, saw you, said "oh it's brother. Hi brother!" and then he was ready to go.

But at least he got to see you. It was one of your bad spells so you weren't much interested in seeing him. Just an hour later you were wide awake and playing.

Auntie Jenn W. came to visit you. She helped bath you and helped with the dressing change. I was so tired I forgot to get a pic of her. :(

We were able to borrow this toy from the play center. You love looking at the lights and even kicked the toys with your feet every once in a while.

So it's around 7 on Saturday morning. Your dad stayed with you all night and I just got in to relieve him and send him home for some sleep before he has to go to work today.

I just want you to know that your dad was by your bedside from 7:30 pm to 6:30. He's going to go home and get a couple of hours of sleep then he's going to go to work today. He will get home about 2 am and relieve me at the hospital for a few hours before he can go home and get a few hours of sleep.

All the nurse comment about how hands on your Dad is. He's always right there at your side the second you need him changing diapers, comforting you, anything you need. What a lucky children you and your brother are to have such a loving, devoted dad like he is.

So your Granny will be here soon. She's going to spend the day with you so your dad and I can get some much needed downtime.

Dr Bailey has been saying we can go home on Sunday so fingers crossed we will be home soon.

I think it's interesting that we were in the hospital for only three days for open heart surgery but will be in the hospital for 5 days for the infection.