Searching for "normal"...

I started this post like 4 days ago. As per usual, something more urgent interrupted, and this was left by the wayside until now.  Such is our life at the moment...you have to be ready to stop what you are doing at any time, to address a more urgent need...
It has been on my list of things to do for quite awhile now.  Update the blog.  I really should be sleeping, or cleaning or trying to figure out whats for dinner before dinner time is upon us and I have no idea, and no time, because I am consumed with baby.  Sleeping is hard to do with a 2 and 4 year old around though.  They don't usually bother me, but instead cause some kind of havoc and chaos--like overflowing the toilet, pulling out all of the wipes from  a brand new package,  putting bum cream on the baby dolls, or using hand sanitizer like it was lotion.  Those are just a few of the "incidents" this week.  I have to choose.  Sleep, or keep tabs on them.  Sometimes I have no choice but to sleep.  Even if it is only 20 minutes.

So, Zachariah has been home for 20 days now.  It has been a roller coaster.  We knew that we had no idea how much work it was going to be.  Now we know.  Thankfully most days we can handle it.  There are those few though, when it seems like  everything is falling apart, and you don't know if you can deal with one more thing.  I will admit, the second day we had him home, I was seriously questioning our choice.  What in the world were we thinking?  How are we ever going to handle this?  Thankfully I gave myself a little slack, and said it is only the second day, give it some time.  Well, here we are 18 days later, and although it was a horrible night, and I was up every 10 minutes for about 3 hours, and every 30-40 the rest of the night, it is better.  We are more comfortable with everything we have to deal with.  It doesn't make it easy, but we are more comfortable with it.  Some days are still consumed with Zachariah and taking care of him; occasionally there is a day when I can get something else done. 
 In the NICU, they have parent hour every Wednesday, and often have "graduate" parents come and share their NICU stories.  I am grateful for those who "survived" and share about it.  However, I am beginning to think they need to have a "Post NICU" parent class.  I guess everyone's experience after NICU is different, but I am sure there are some similarities as well, and those should be shared.  Things like how overwhelming and time consuming it is to go from spending the majority of your days at the hospital, and then going home to the rest of your life to becoming the full time caretaker, 24/7 for this child with some pretty advanced special needs.  Although there may not be anything that can prepare you for that.  No one can tell you how to figure out how to get your school child up and ready, while trying to get a baby changed and fed.  And by fed I mean spending 30 minutes working with a special bottle, and then measuring, priming, and putting the rest of it in the feeding tube, and that is if everything has gone smoothly. 
And the doctor visits!  We brought every machine home with us that Zachariah was on in the NICU.  He has a pulse oximeter that monitors his oxygen saturation and his heart rate; and alarms anytime there is a true issue, a false issue, or a non readable issue.  He has oxygen, and now high flow oxygen with a humidifier.  The tube for the humidifier is only about 3 feet long, so our portability is very low.  We have about a 8 foot maneuverable space, and that is it.  He has the NG tube and feeding pump, which is a real pain in the rear.  It is never exact, and can under or over feed by 5%, and can cause air bubbles as well.  And then there is the suctioning unit.  Loud and noisy, but does the job.   It takes us at least 30 minutes to get everything packed up and ready to get into the car.  And is still pretty much a 2 person job.  And because someone needs to sit next to him to monitor him, we can't  go anywhere as a family even if we wanted to, because there is not enough room for all the other carseats in the back.  Hopefully someday that will change, but right now, I haven't yet reached my comfort level of sitting in the front seat while he is in the back.  And my dear sweet husband has been so wonderful to take the time to go to each doctor appointment, so that I can sit back there and monitor Zachariah.  In 20 days we have had 6 appointments already. And there are many more ahead.

And I haven't even mentioned the fact that we have 3 little girls, and life that goes on at home.  Some days some things get done, some  days they don't.  It is an absolute miracle if I am able to get dinner ready before 7pm, and even moreso a miracle if I am actually able to sit down and eat.  I guess it kind of feels like that people think that since we are home, things must be back to "normal".  I am here to tell you there could be nothing further from the truth.  In some ways, it is like we could use the help even  more now than before.   Thank goodness for my mom and my sister in law Marissa.  Without them we would seriously be underwater.  They have saved us on many occasion, and have helped us out in countless ways and with countless hours.  Someday, I hope, I will be able to get up, dressed, take care of the kids, take care of Zachariah, do dishes, make dinner, and bathe the kids all in the same day!  We are definitely searching for our new normal.  Someday, it will come.  When that day will be, is anyone's guess.