Baby steps

This morning your blood gases showed good carbon dioxide numbers so they were able to go down from 22 to 20 on your rate (the rate per minute that the machine gives you breaths). We will take any step in the right dirextion. A baby step is still a step to celebrate. 

You had an echocardiogram which showed that there is still a small leak in your heart. They are pretty confident that it will close up since it's so small it's hard to even see and it's in the muscle. Since the muscle portion of the heart grows over time it closes as it grows. If the leak were in the membrane it's not as likely to close. Your pulmonary pressure (the blood pressure that is in your lungs) is a little high so it's a good thing we have you on one of your medications. We started it so your borderline high pulmonary pressure didn't increase any more. The medicine dilates the blood vessels in your lungs so the heart doesn't have to work too hard to deliver the blood to your lungs. The harder it has to work the higher the pressure. When some of the sacs in your lungs don't work the heart has to work harder to deliver the blood to the sacs that are working, causing the pressure to increase. 

After being re intubated and the stress yesterday you've been tired. It's good for you to sleep. You didn't have a setback as far as oxygen which is great. You're about the same in the 60's today. I just wish we knew why your oxygen won't stay in the 40's and 50's when you get there. We are hoping to turn a corner. 

While I visited you today I sang you lots of songs. I love to sing primary songs. I would sing to you when I was pregnant each night before bedtime. The few hours I was there you just snoozesd so I sang. I'm glad you rested so much. Sleeping and growing are what you need right now. I always rest my hand on your head while you sleep. Its comforting just to touch you even though I cant hold you. It's the strangest thing (and pretty tough) to see you every day and not be able to scoop you up and rock you. To not be able to feed you. To not see what your sweet cheeks look like and smother them with kisses. To not be able to hold you without restrictions. So we just make our new normal. I touch your head, hold your hand, sing you songs, talk to you, and hold you when I get the chance. 

Audrey asked me yesterday, "so what did you do today?" So I told her what I do everyday:

Pump then wash the pump parts 

Get girls ready for school 

Pump

Pay bills or straighten up the house 

Pump and wash 

Go to the hospital and spend time with the sweetest baby boy 

Pump

Pick up girls from school

Do errands and homework and spend time with the best girls. 

Pump and wash 

Have dinner and do bedtime routine 

Pump

Do a few things before bed like post etc

Go to bed 

Pump in the middle of the night if I wake up to the alarm. Many times I turn the alarm off and go back to sleep with absolutely no recollection. 

And then start again the next day. Gotta get you some good food so you can grow! 

I love you sweet boy. Sleep tight. 

Xoxo

Mom