Hospital Preperations

It's coming soooo fast. Our next hospital journey begins 2 weeks from today. It's been sooooo surreal being at home for a month now. It's been almost like having a normal life. But then today I started realizing that I have to get organized and ready and packed and everything situated. Eli's nurse and I were chatting about travelling with a sick special needs baby and HOLY COW. We both began listing all of the things that we will need to pack and take and haul in and set up, and adjustments and changes for travel accomodations and all of those things. This is our 1st trip traveling out of city with Eli. The amount of things we will have to pack is overwhelming. We won't have his medical supply store right at hand, his nurses, his normal doctors, his extras, nothing. We have to pack for every possible scenario. I got the hotel booked this evening. I was able to get a nice hospital rate at an amazing hotel within eyesight of the hospital. They were able to get us a large king room, with a fridge in room(gotta keep his milk and meds cold), and I checked to verify they have generators and all that just in case of a power outage. So the pump should be good there. They have parking, and valet/concierge services to help get all of the things to and from the room. Next I need to call the insurance, medical supplies, medical equipment, nurses, doctors, pharmacy, and his PT/OT/Speech. Then I need to count medical supplies, organize and pack medical supplies, figure out a way to rig his pump in the van so he can have his evening feeds on time, get his complete chart and contact info together, pack his stuff, and hopefully fit a few Bob and my stuff in the van as well. :)

I'm just freaking out about getting all of this packed. So many things go thru my mind...If his mickey falls out, if the balloon gets a leak, if his pump has an issue, if the battery runs out on the drive there, if one of his bags has a hole, if we lose one of his $66 bottles, losing a syringe, taking enough 2 by 2's, meds, etc....

and none of the above fears even begin to list all of the fears about what the testing will find this time. Every single time it's been worse than the time before. I can't keep doing worse much longer. This is a whole new team we have briefly spoken to but never met. We won't have our doctors, nurses, therapists, nothing. We don't know these people, how they work, and how they will be with Eli or us. i know that might sound strange but over the last 4 months we have worked to hand pick each and every person that is part of Eli's medical team. And his team is amazing, if I do say so myself! :)

I just want to stay home curled up with my little man and pretend like this is all over. Pretend like there are no surgeries ahead of us, no more pain and torture, no more medical anything.

I would have never expected my life to be like this. So medical, so organized, so structured, so disconnected. I miss just having a baby, just holding a baby. I miss being able to enjoy his smile for a smile, not having to log it in my mind on a neurological milestone chart. I miss nursing without thinking about how many times he's eating, how many times I've pumped and how many ounces are in the fridge currently awaiting the pump tonight. I miss propping him against me, tummy to tummy, and not having to adjust him 10 times to make sure that pressure isn't being put on his Mic-key. I miss a bedroom full of JUST clothes and sheets. mine is full of pumps, tubes, syringes, drain sponges, pads, stethscopes, thermometers, urine catch bags, specimin cups, medications, lotions, creams, mic-keys, HUGE scales, charts/logs, etc... My nights are filled with the clicking of his feeding tube, the beeps as it's empty or kinked, the warming and refilling, the pumping, the crying baby, the cleaning of tubes, etc... I just want to curl up with my son and sleep.

I don't mean this to sound like a pity party...I just needed to vent and like always my blog is the place for me to do this. I wouldn't change Eli for the whole world. I love him more than words could ever describe. I'm just tired and not ready to start the next phase of our journey. I need more time...not that it would help............

Below is a picture of my little man from yesterday. Today's official weight was 9lbs 12.4oz.