NJ Day

                We got his bed all decorated with some Easter stuff to make it festive for Gibson.  Every Wednesday they have a lunch for parents with kids in the NICU and mom won a soft stuffed bunny so Gibson got to take his picture with the Easter Bunny today too! 

At the NICU parent lunch they had a family come talk to us about their experience and it just so happens that their son had a left sided diaphragmatic hernia just like Gibson.  It was great to hear their story and what they went through.  So far our experiences have been very similar.  He had to do ECMO and his left lung was also very small. They were worried about his endurance once he gets older.  Their boy is now 8 years old, loves to play basketball, soccer and other sports.  The only lasting effects that he has from his hernia are the scars and he loves to show them off.  Running and playing is no extra effort for him.  It was great to talk to them and see their boy running around and laughing.  He was excited to know he is helping out a baby that had the same thing he did. He also thought “Gibson” is a cool name. We know from talking with them it is still going to be a long up-hill battle, but it’ll all work out in the end.

Dr.  Null is really anxious to start feeds with mom’s milk.  The feeding tube to his stomach isn’t going to do the trick right now so they decided to do what is call an NJ tube.  This goes in through the nose through the stomach and actually into his small intestine.  His stomach still needs some time, but they want to get his intestines started with consistent feeds to get him ready.  Milk will be the best thing for his healing and to eliminate some of the drips that Gibson is on.  Usually NJ tubes are fairly easy and slide right into the small intestine from the stomach.  However, nothing is easy with Gibson, due to his flip flopped anatomy in his abdomen the NJ tube wasn’t going in.  They tried once around 4pm. Thought that it felt in place. After two x-rays they determined that it was just kinked in his stomach.  So they pulled it out and retried about an hour later.  Guess what?  Same result!  Gibson, like any of us, absolutely hated them threading a tube through his nose and trying to push it into his bowel.  We were told there’s a nurse on at night that is “the pro at NJ’s” and never misses.  Well, the pro couldn’t get it in either!  So they tortured poor Gibson three times trying to get the tube down with no luck.  It was so sad for us to have to hold him still and watch him have to go through that discomfort over and over again. Unfortunately for Gibson they are going to take him downstairs to radiology where they will use a Floral X-ray method to get the NJ tube in the right place.  They can watch through x-ray where the tube is going and maneuver it from there to insure it’ll be in the right place.  Assuming that all works out, Gibson will be getting food tomorrow into his bowels.

Everyone here has a hardship and problems with their babies and children. Since we’ve been here Gibson has been one of the most critical newborns. It’s been super hard and we’re so grateful to be his parents even though it isn’t exactly what we had in mind for our sweet baby. We met a couple today that had to let their baby go because her quality of life wouldn’t have been great. They had to say good bye to her and our heart aches for them. We told them what we have heard so many times. “You have given her the best gift you could have by giving her a body. It is the greatest thing you can do for your child. We’re so sorry you have to go through this, but families are forever and you’ll see her again someday and raise her when the time comes.” We’re so thankful for our little miracle baby and the progress he has made and will continue to make. We have faith that we will take him home and be able to raise him here in this life. We can’t help but cry for them and feel so sorry that we have our baby and they are going home without theirs. You grow close to these families even though we’ve never met before and come from different places. When you think you have it hard someone else has it much worse. We all need to count our blessings and be thankful for what we do have and try to be happy for our own situations.