Luke's birth/PICU/NICU pictures

1st night of his birth....weighing in at 9.5 lbs, 21inches long; severe edema and on the vent (feet and hands were mildly contractured ---later to be determined as positional contractures due to the constricted womb from mom) - globally hypotonic.

3rd day of his birth...still on the vent at Children's and showed to be very symptomatic of a IDM CHILD. (infant of diabetic mother) -- Severe edema, weighed 9.5lbs at birth, broad shoulders and respiratory distress.
Luke was vented, had the belly button line, NG tube for feeding and monitors to support his oxygen rate and heart rate.
4 weeks old---still in NICU and fully extubated off the vent. Breathing room air.

At this point, his glucose levels were finally stabilizing out with medication.

At 4 weeks old Luke had an eccocardiagram and the hole in his heart was very large therefore causing respiratory distress AGAIN. He had to have emergency heart surgery at Medical Plano. HEART PDA ligation. Luke was a tough stick with an IV..therefore we decided at this point to do a broviac line.

7 weeks old and he was hypotonic all over; diagnosed with Laryngomalasia; aspirated thin and thick liquids and aspirated his reflux as well. At this point, we decided on surgery.

Muscle biopsy; fundo nissen; gtube surgeries.

Post OP pics
Side view--his chin was set back and his mouth was drooped on the right hand side
Luke at 2mths old...still in NICU
*his mouth would open wide when picking him up. He was floppy all over and needed full support when holding.

2mths

2mths

In the NICU at Plano Medical - Our child had a few 'episodes'.

1. He would choke on his own secretions post op from the gtube.
2. He refluxed his formula and desatted to the 3o's and choked. Therfore, this is why we opted for a fundo nissen.
3. After the many episodes of choking, Luke started taking Robinul to help with the secretions. This helped tremendously.

Going home from NICU after 94 days...

Overall, our 94 days in the NICU was exhausting. We still had no clue what exactly was wrong with Luke other than I was Gestational Diabetic. Our discharge orders included our Robinul secretion medication; motrin for the gtube/fundo site and continuous feeds on similac infant formula. 100% gtube fed.

I must confess, we were unprepared for our Luke being on a gtube. I found out the hard way and I really believe many special needs parents are not adequately trained to deal with a special needs child. The biggest thing was not being educated about the state's services for parents like us. I have had to advocate and find out myself. It's been a huge journey.