Home is what you make it

     Have you ever eaten a food for the first time and thought to yourself "how have I been living without this?"    For me, this was Lebanese food prepared by our good friends George and Rose. From the first bite of that stuffed grape leaf into the garlic sauce, or toum (we actually have a little running joke amongst our families about my deep love for toum), I wondered how I survived 27 years on this earth without the most delicious food ever made.  This example, while paling in comparison, is a glimpse into how we feel about having our baby home.  When I wake up and walk to the room next to mine in my bathrobe and see him laying in his crib I think to myself "how did I ever live without him before?"  He is our pride and joy, our praise and thanks.
     Jude has been home for nearly a month now.  He is doing well.  His feedings have been reduced so that he is no longer on 24 hour feedings and now during the day maintains a 2 hours on 1 hour off schedule.  He is nearly 10lbs now and losing half that weight through his diaper daily.  For the first couple of weeks I was still having to give him his twice daily shots in the leg for his brain clotting but after a doctors appointment a couple weeks ago we were able to stop those which is good news for him and for me (no one likes to make their baby cry).  He had made some progress with the ventilator settings, however, we had to increase those last week as he was not statting well.  We're hoping it's just a cold or something to that effect.  Aside from that, he is generally a happy little boy.
       Tracy and I have been adjusting to life away from the hospital.   It's nice not to have to take three freeways, park in a crowded garage, walk a quarter mile to an elevator to see him.  He is around all the time now.  This has also had some other implications in our lives.  It's amazing to have him home.  There is nothing I would have wanted more and nothing I would change about that.  That being said...it's amazing how much I (notice how I said I and not we) took the nurses at the hospital for granted.  Having Jude in the hospital had it's own baggage of it's own (those with short-term memories need only read the beginning of the paragraph again) but it is definitely a full-time job and then some taking care of him.  Being the stay-at-home Mom, Tracy assumes the majority of the responsibility, however, Meemaw Kay is also a big asset.
     The move home was more than simply preparing the nursery and taking him home from the hospital.  In order to prepare for his arrival some changes had to be made around the home.  Most notably, grandpa had to have an electrician come in and designate two new brakers on the electrical panel that went to grounded outlets.  This had to be done since the wattage used by Jude's medical equipment equates to just shy of that used for a Trans Siberian Orchestra concert.  Now, if you're like I was you may be thinking "that's no big deal.  Grounding something simply means hooking it to something metal so I'm sure that grounding an outlet means nothing more than an extra electrical wire from the outlet to something metal, right?"  As the "Bizarro Ed McMahon" might say, if he existed of course, "You are incorrect, sir!"  Grounding four outlets in the home and designating them as new spots on the braker took some significant time and effort that included holes drilled though the basement ceiling, main floor, and some time spent running wire through the attic.  Luckily, grandpa knows a good electrician but we helped as much as we could and saw firsthand how much work that was. 
     After the outlets were grounded, the nursery was painted, and we had all been through our emergency trach training, vent training, etc. we were ready to bring him home.  It was a funny day filled with mixed emotions.  We were happy to bring him home but had also grown attached to the environment and the people.  We also left with an entourage of people.  When Jude left the hospital it wasn't just our car. We also had four other cars following us which included his home health nurse team and home medical equipment team to ensure a safe first trip.  And after all the hoopla and settling in was done it was just us and our little boy.
     So, we've been adjusting to life without 24-hour experienced nurses in the safety of a specialist children's hospital to our home, well grandpa and meemaw's home.  We had 24 hour nursing care for the first two weeks, which was nice but not necessary.  Tracy takes care of Jude's needs basically 24 hours a day and we usually only utilize the nurses at night so we can get some sleep.  That will change here soon though as we are going to only have nursing care available to us for about 40 hours a week starting in June.  Some nights we don't have nurses though and one of us, usually Tracy, sleeps with Jude on the bed in the nursery.  Sleeps is a term that is not quite appropriate though.  Between machines ringing off and the feedings and care needs during the night you might get four to five hours on a good night.  Jude has a pulse/oxygen sensor that his hooked to his foot that is sensitive on it's own but goes off more easily whenever he kicks his feet from restlessness or from being gassy.  This triggers his alarm which rings off at least a dozen or so times a night and is about as loud as an alarm clock.  Thankfully for me, Tracy takes the night shift 9 out of 10 times if a nurse isn't available, which has become a frequent problem lately.  Jude has gone on a couple of outings since he's been home (besides hospital visits).  We don't take him out that frequently because  it's a little scary to have him away from the security of home and it's a lot of work to get him there.  Preparation for getting him in the car takes about an hour with all the equipment and another ten to twenty minutes to load it all on the stroller once we get there.  We did take him down to the March of Dimes downtown where he was reunited with some of his peeps from Children's Mercy and another trip to his future daycare at the church building.  He'll have more trips to come as we get this transporting thing down.
     But, when you take away all the nuisances that go along with Jude's tracheostomy tube and g-tube you are still left with a beautiful boy and two happy, thankful parents.  I would voluntarily sleep in a chair at his crib-side every night if that meant I got to see his face every day when I came home from work.  For the most part, things are going great.  We're home from the hospital and in addition to adjusting to that trying our best to operate like a normal, happy family.