Tuesday, September 30, 2008

Not today

We won't be going home today, nothing major is going on its just that Grace has had too really sleepless and fussy nights. The doctors don't know what is causing her to be so fussy, it could either be a terrible bout of colic or withdrawal, or a combination of the two. But they want to get a better feel for what is going on with her and see if they can help it any before they send us home with an inconsolable baby.

Right now she is finally asleep in her swing--though she has woken up several times she has fallen back asleep---this is the most rest she has had at one time in two days (1 1/2 hours). Last night the nurse and tech her so kind they took Grace out of the room at midnight and walked the halls with her so I could get some sleep since I hadn't slept the night before. I was so grateful, I woke up at 6am to Grace screaming in the hall (she has a good set of lungs) and then resumed the walking the halls with her.

We finally tried a dose of morphine, she had her normal response--slept for 20 minutes and then woke up calm. But an hour later the inconsolable crying began. It is so hard because normally she calms easy and is content if in your arms, but not these last few days. So the plan today is to stop the gavage feedings and feed her via the pump over 1 1/2. Hopefully this will help or at least give the doctors a better understanding as to what is going on with her.

I'm hoping to go home tomorrow, I'm tempted to just tell them that we will take our colicky baby home and deal with the hardship that brings to just have her home finally. We have been in the hospital for a total of 86 days, 80 of which spent in the PICU--its time to go home. My goal is to spend more time at home than we did in the hospital before its time to have her second open heart surgery.

PS--if any of you have had colicky babies, I would love to hear what worked for you to help them get some sleep.


Erica said...

I don't have any great advice for colicky babies other than what I am sure you've already tried. Swaddling and walking the halls. Hopefully you at least have a stroller to push her in. That seems to be the only thing that calmed Eden down. Good luck. 86 days is an exceptionally long time to be in the hospital.

Michelle said...

I have a great book that was recommended to me by several people, and has helped tons! It's probably nothing you don't already know, but it might be helpful with my sweet little niece. It's called, "The Happiest Baby on the Block" I'll bring it to you!

Hilary said...

I know it is so frustrating not to get any sleep in the hospital. I am glad that you have nurses and techs that will help. Daxton did this also where he was unconsolable(spelling?), I am pretty sure it is because of the weaning of the ativan, so they gave him some methadone. That has helped so so much. They also do so much better when they are home, and when they are not poked every few hours. You will make it and it will be heaven. Good luck, email if you need to vent or talk. Hang in there, this too shall pass. Love you, Hilary Cook