Sunday, November 14, 2004

Today was a HAPPY DAY!John and I both got to hold Johnny for about 15 min each. And Myla got to hold his hand too.He is still recovering from his surgery (Duodenal Atresia & Malrotation) and there is so much going on.I wont go into the details, but I can say, that everything has taken a step forward.When we got to hold him, his eyes were wide open and we just gazed into his eyes with such connection it was incredible.Since he still has to be under the biliruben lights with those little goggles on, he spends his days and nights not being able to see.But his levels are at 11 right now and when they are steady at 10 or below, he will be out of the lights hopefully for good.The doctors are hoping that will be over the next couple of days.Cant wait for that!The fact that he has Down syndrome is of no concern to us.We just want his physical little self to be strong and healthy so he can be home where he belongs in our arms day and night.And so that we can start on any early intervention therapy that is available to help him develop to the best little guy he can be.We love our little boy so much and the hardest part of our day is having to leave each night to go home and sleep.

He doesnt need continued oxygen in his little “tanning bed” any more and it was only on for a while this evening when he seemed to be needing a boost.The rest of the day it was turned off and he was breathing perfectly!

His little catheter was taken out today and he has been wearing a nappy all day. Hes peeing great, but now we need prayers that he starts pooping like a champ.He has yet to poop since being here.Still nothing as far as nutrition for him exceptI.V.because of his intestinal surgery.Were praying that hell be able to start breast milk (that Ive been pumping day and night) from a feeding tube placed in his nose and then from finger feeding or even better, from the breast.So specific prayers for pooping and for breast milk introduction are the next steps.

The hospital has a strong advocacy program for Kangaroo Care with posters and fliers all over and encouragement for parents and family to participate.So when the time comes, we will be doing that. It is very similar to all the benefits of using a sling except that it includes skin to skin contact as well.II already have his sling in my locker ready for the first time we can use it.Also, since we are now adjusting to NICU visits with Myla.Her lengthy stay at my mum and dads house went really well considering shes never spent more than a couple of hours away from us in her whole two and a half years.We now have her routine and needs to consider too, so well be going in to see Johnny every day after lunch and nap time, then staying through dinner and coming back home around 8pm for bed and much needed rest.

But Johnny will not be alone during those morning and early afternoon hours.We have four extra bracelets for people who we choose to have anytime access to Johnny.So my mum and dad each have one and we havent decided on who to give the other two bracelets to yet.This way others who love him almost as much as us can go in when were not there or at anytime and be with him, hold him, touch him, kiss him, sing and talk to him…. that brings me so much comfort.

Mum says that members of our church are making individual sized, microwaveable frozen meals for us.We can start taking them to the hospital with us and just nuking them instead of having to budget for our whole familys cafeteria food daily for who knows how long. ; ; We still have not made a grocery store trip since Johnny was born!Im not even sure when we will be able to do that! – hopefully soon because we are running low on everything.The church helping us with those individual meals will be such a huge help.

So thats it for now!Lots of moves in the right direction. It would be a true miracle, but we are hoping that Johnny improves enough to be home for Thanksgiving at the end of November, but thats a pretty short sighted goal.Being home for Christmas is a more realistic one, and even that may be stretching it a little.No matter what though, Johnny will have a huge gathering of out of town family and friends visiting him for both holidays.So if youre praying, why not pray for the biggest miracle…Thanksgiving time!But if God thinks its best for Johnny to get visitors in the hospital for the holidays, thats fine too. We dont mind being there one little bit if thats the best place for him right now.

Johnny’s Journal – Part Four