
Todays MRI in the radiology clinic.

Believe it or not, Little Bug is acutally the little bump on the table getting ready to go into the MRI machine.

Little Bug getting manual pumps of oxygen before his MRI.

Waiting for MRI

Just before going into the MRI....sleeping peacefully on the ventulator!!!

Yesterday just after coming back from the OR....I just hate to see that breathing tube on him so tight.

Yesterday on the way to the Upper GI test......Little Bug is so tired of going place to place and having different procedures!!! I don't blame you Little Bug, Mama's tired of it too!!!!

Yesterday morning before the procedures.......Little Bug on the C-pap machine with a few of his fuzzy bug friends.

Mama and Little Bug on Mother's Day night....He's pretty drugged up, but at least I got to hold him for an hour!
Snuggle time is my favorite time of day!!!
Go to sleep my little one
Go to sleep my baby
For the Lord watches over you tonight
Go to sleep my little one
Go to sleep my baby
You’re in the palm of His hand
You’re the apple of His eyes
Close your eyes, close your eyes
Mommy loves you
Close your eyes, close your eyes
I love you!!!!!
I am sitting in Connor’s room watching him sleeping and the above lullaby is what is playing in his crib. He looks so small when I glance up and see him in his big foam wedge that helps him with his reflux. His head is resting on his blankie and the breathing tube is securely tightened around his lips. His little legs are sprawled out because of his IV line in his groin and I realize in this moment how “not normal” life is for Little Bug. I realized it earlier today too when we sent him into the big tunnel for his MRI. I started to cry when I thought about other babies at home in their cribs or having tummy time or just plain snuggling with dad or mom. I understand in more of a clear way each day that we are no where near the end of our journey. There is still so much territory to cover and many more mountains to climb. Oh Lord, give me strength. Strength for each new road. Strength for every unanswered question. Strength for every new decision that must be made on Little Bug’s behalf.
Today Connor went in for his MRI. Praise the Lord, everything was “normal”. They found nothing abnormal in his brain nor did they find anything of significance with his clavicle bone (an issue that was prominent a few weeks ago). So……where do we go from here you ask? Tomorrow the GI docs will be making a decision regarding Connor’s G-tube. They feel that maybe he would benefit from it advancing to the small intestine so that he would reflux stomach contents, but they’re not convinced this will help. They may decide to take him off of his acid blockers for 3 days and then do a PH Scope to test the reflux and see if they can catch how bad it really is. All the while he remains on the ventilator and sedated. The dietician came in with more unsettling news today about Little Bug’s growth. Apparently, he has a malabsorbtion problem. He continues to poop out all the good fats. This may mean that he will have to be on predigested formula to grow. I am discouraged that this may mean he will not get back to mama’s milk. I spend so much of my time in the small pump room and each time I’m there I tell myself, “It’s ok Lori, at least you’re giving Connor a part of yourself that he really needs.” And now to think that this may be taken away too……Oh Lord, what’s next. Can’t you please let him be nourished by his mama????? We will know more on this within the week as they do more tests on his digestive tract. Today was also the first time I actually heard the ICU docs refer to Little Bug as "critically ill". WOW, that was a stop-in-your-tracks moment for me.
I must be honest; I am discouraged that we have not seen the answers that we are looking for. But, I am reminded that when Joshua fought the battle of Jericho, they had to march around the walls of the city 7 times. So, we will continue to march, we will continue to blow the trumpet and beg of the Lord to move on our behalf.
Lovebug Hugs,
Lori