Nora’s First Day Home

Well we made it through a great day with Nora on her first full day home. She seems to love it being home and we have had lots of fun. As I am writing she is dancing on the bed with Sarah and smiling away. If we put her down she screams little fake screams. Pick her up, happy as can be. I think she has been a bit spoiled by all the great NICU nurses so I guess we will just have to keep it up, which I dont think is going to be a problem 🙂

I thought since were home now and setup with our new home system with portable pumps and everything I would take some pics of all her “accessories” and give a little explanation to give everyone an idea of what taking care of Nora is all about. Along with a slew of medications we give her throughout the day below is the bulk of Nora’s medical equipment.

Nora’s G-Tube (feeding tube):

Ok so the G-Tube looks worse than it is, although its nothing fun. The redness is normal the doctors say and should lessen as her skin begins to become more used to the rubber tube sticking out of it. The basic way it works is there is a open hole in her belly that goes directly to her stomach. The G-tube is just a rubber hose with a small balloon on the end that you fill up with air or water after inserting it into her which keeps the tube from coming out, although Nora has pulled it out couple times already at the hospital so we expect the day will come we will be replacing it. Since the stomach has so much acid they dont worry to much with infection so more or less its hook her up to the feeding pump, fill the bag and hit go and Nora’s tummy is satisfied for 3 hours.

We are currently feeding Nora through her G-tube only. We hope to go back to bottle feeds soon but are taking it slow to find exactly what she can tolerate in terms of amounts of formula at this point. Right now we are feeding her a continuous 11ml of Elecare formula every hour, for 3 hours, with a 1 hour break. This means some long nights for Sarah and I so we hope to get her on a longer feeding schedule at night soon.

Nora sleeps great through the night though, never made a peep 🙂

Nora’s PICC line:

The PICC line is how Nora is currently getting the TPN and Lipids (hopefully shortly replaced with Omegaven). It is similar to an IV except that they thread the plastic tube from Nora’s wrist to her chest where it is hooked to the Superior Venacava, right outside her heart.

The PICC line pretty much sucks. It has to be kept very clean and makes Nora very susceptible to infection since she more or less has a open line right to her blood stream. It can also clot very fast and stop working so we have to keep some sort of fluid running through it all the time. The pumps for the TPN and Lipids are made to be portable and are fairly small, run on batteries, and come in nifty black fanny packs. I think we will find a good backpack to keep the pumps and all of Nora’s supplies in to make her as portable as possible and avoid the fanny pack look 😉

Nora has already had 3 different PICC lines and putting them in is not a very fun experience for her so we hope to keep this one for a while. The ultimate goal I think will be to go to a port or something more permanent that is not quite as fragile and a bit less susceptible to infection.

The TPN (yellow), the Lipids (white), the Feeding Bag (orange cap), the Pumps, and the Pole:

Pretty simply the pole that holds everything while we are home. Its not to big so pushing it around the house with Nora is not to bad although I think I am going to try and find something better, especially if we will be traveling as the pole does not break down very small.

The Feeding Pump:

The feeding pump is pretty easy to use we. We fill the bag with Nora’s huge amount of formula (kidding), hang it, prime the line, connect it to Nora’s G-Tube, turn the pump on, listen to 3 VERY loud beeps (wheres the volume on this thing!), set the feeding amount (currently 11ml/hour) and click the knob to start.

Thats it, Nora’s fed for 3 hours as long as the pump keeps doing its job. MMMMM Nora loves her food so go pump go!

TPN and Lipid Pumps:

We have 2 of these but they are the same, and work the same. A bit more complex but still pretty easy we just reset these every morning when we change her TPN and Lipids out. Its more or less a series of prompts we walk through answering “Yes” each time. Nothing we cant do.

The home health care nurse is also teaching us how to mix the TPN ourselves too but for now she is doing it until we feel comfortable. Thank God too cause this is a lot to take in at once but for a computer nerd and a bookkeeper I think we are making the transition into nurses fairly good.

Tomorrow we take Nora for her first appointment with her new Doctor, Dr. Dalrymple, since Dr. Patterson will no longer be taking care of her now that she has left the NICU. We have already met with Dr. Dalrymple and he seems like a very nice and smart man and Dr. Patterson assured us he would be following our case. We will then be taking her to Shands Childrens Hospital in Gainsville for an evaluation next week with their GI specialist. The next step after Shands will be to see if we are going to be able to get the Omegaven here or if going to Boston for treatment is our only option. I spent the day on the phone with the FDA, our insurance company and our doctors trying to work it out so we can stay here but at the moment we are not sure how things will play out. Stupid system makes everything hard 🙁

And lastly our little monkey all ready for bed tonight:

This is what makes it all worth it!