Easter Test Run

This Easter was the most different Easter we have ever had.  First of all, we have Jasiu, it's his first big holiday and he is interstage, so we are keeping him in our home... aka "the bubble" he is comfortable and used to any germs left in this house. So, instead of waking up the kids for early morning Resurrection mass at 5:30 am as we have done with Emily last year, I went alone to church (as I have done since Jasiu came home) and I realized I really miss going to church with my husband and Emily and I don't even know how it feels like to be in church with Jasiu.  I sometimes wonder if the people who may recognize us from before wonder what happened to us. After I came home we switched and Joe went to the next mass and I prepared Easter breakfast (we didn't even feel comfortable taking Jasiu to my mom's house yet) and Joe's parents came over to eat with us, though my family surprised me and they all came too, nice surprise.  Than since we couldn't go to Joe's family for dinner as we usually go, which consists of over 20 people and a whole bunch of kiddos running around, we couldn't risk exposure to new environments so soon. So dinner came to US !...

My dear mother cooked a 2 course dinner and deserts and brought it all to my house so we could be together. My godmother and cousin also came over. Thank goodness everyone was healthy so that they could visit and we spend a nice afternoon all together.

Now to the test run... Since it was Easter and we had a whole bunch of family over we thought it would be a good day to allow John to be tube free and see if the reason he's not taking to the bottle is because of the tube in his throat. We gave him 12 hours and tested how much he would eat better and on demand. ( This was doctor approved of course as long as he got 12 oz during the 24 hour period) However Jasiu was quite content to have the tube out, it did not give him enough comfort to take even half of his bottle at once. During the 12 hours or so, he ate one to half ounce at a time and every 1-2 hours. It was exhausting for him and us, though we didn't mind he seemed to be struggling. Because we can't do this test run for a longer period of time just yet (fear of dehydration and impact of that on the heart) we had to put the tube back down. Sad day for us.  One of the only good things from this was that we took a few pictures of Jas without the tube again and we got to see his precious face all day.  I am praying that he gets stronger and stronger and can start taking gin more by bottle .  I have a feeling that the throwing up and reflux has something to do with the NG tube but can't prove it unless he went longer without it, but we can't do that yet so that experiment will wait until later. We keep praying that he will just get it one day until then, we keep practicing the bottle with the tube in.  

Now for a few pictures of our festivities:

Emilka loves to cuddle with Jasiu

Emilka and Ola

loves to sleep like this

It was supposed to be a family photo...

...but Emilka passed out brfore we could :)