Home, here we come! Scared, excited, exhausted, ready. We are going home after just shy of three weeks. This has been the shortest and longest couple+ weeks of my life. I have no idea how thing will go but I have awesome friends who've offered to help out if needed.
I'm feeling pretty confident in our going home. I've learned how to work the NJ and have come to appreciate it. Why? Because minus a few snuggles and lullabyes during the night I should be able to get a good amount of sleep. And my favorite part is, since it's the NJ I don't have to be the one to put it in. True, this means if it comes out we'll have to head to radiology/the ER depending on time of day but that means I don't have to be the one to shove anything down her nose/throat for a little while longer. So I can get used to doing everything else before I have to get used to doing that.
I am also feeling good about Livie's feeds. Since she's on nectar thick I can't nurse (nectar thick is about the consistency of the real fattening egg nog) but I've gotten the hang of how to thicken her milk and mix her milk with the extra calorie formula. She has been upgraded to eating about 1 oz every three hours during the day and whatever she'll take at night. Apparently she's kind of a stinker with her early morning feeds and just won't wake up for them. Since she's got her NJ though, I don't have to worry about that. If she won't wake up, I just wait to feed her when she will and she'll get what she needs through her feeding tube.
As for her medications, she's only on three. Zantac for her reflux. Lasix, a diarrhetic. Aspirin, to thin her blood. The sano shunt that they put in her heart could get clogged otherwise. And she can have tylenol too if needed but this girl hasn't had any since yesterday morning and is happy as can be. She's even starting to smile, the gassy smiles but smiles nonetheless, and OH MY GOSH! Her dimples are the cutest! I make pretty babies if I do say so myself.
Well, my home health person is here so I'm off!
Friday, June 15, 2012
Ready Or Not
Posted by Sarah Turley at 2:12 PM
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4 comments:
Holy Crazy!!! :)we are so excited for you to get to come home!!!!!
Holy cow. I had to come here to get the details! Home at 2.5 weeks, on NO oxygen, eating (even nectar thick counts, though for your sake, I hope her NJ moves to an NG soon... seriously less stressful when it gets pulled out... I promise!), and only on 3 meds???!!!! I seriously think that Olivia has just surpassed the record for being the least naughty HLHS baby I have EVER seen! I won't lie, I am a little jealous (Grant came home just shy of 3 months, on 13 meds 5x a day, etc...) but truly I am just excited that her path is going smoothly (despite the fact that she has been through a lot!). YAY OLIVIA!!! I am serious... text me anytime day or night if you need to vent, cry, talk, or ask questions! Also... my best NJ tip.... tape that thing all the way down her jaw! Keep lots of extra tape rolls in her feeding pump bag so if it starts to get pulled, you can hurry and stop it, push it back, and retape it! Driving to PCMC at 4 in the morning truly sucks, so do what you can! I always tucked the tube behind the neck (so baby is laying on it) at night to prevent little hands grabbing it. And, don't be afraid to flush the tube with at least 3-5 mls of water after each med (especially asprin) to prevent clogs. I hope you get some sleep tonight!!!!
That is crazy!!! Good luck and keep us posted!
Yay for being home! I bet your Ella is so glad to have Mommy home. I'm glad you have some friends around and a great support system for this new adventure of life.
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