Things are the same with Jimmie. He still does well (adjusted age appropriate) eating solids, he still refuses to take anything substantial by mouth. Since Dr. H. set the appointment to discuss the g-tube with the surgeon (Dec. 15th) Rachael, Justin and those of us close have been processing...
Rachael has been struggling with disappointment. It's hard for her to see how well Jimmie is doing in all other areas and not expect better of him.
We cannot forget what this little guy has been through though. Yes- he has been phenomenal for a 24 weeker, but the fact remains he was born in to this world too early to eat, too early to breathe, too early to even open his eyes. What we have realized over this time as Rachael with the help of Dr. H. has tried to tube wean Jimmie- is that this is behavioral. And in that sense it shows how truly smart, aware and cognitive Jimmie is. His neurological development is so amazing. Not only has he associated drinking with pain and fear, he also knows it's hard work and that it is something he can refuse. You cannot force anyone to drink. In a world where he has been forced to do so many things before he was ready, before he should have even had to have an inkling of outside the womb- he was fighting to LIVE; in Jimmie's world this is one thing he *can* control.
This is a world where Jimmie has been faced with life or death challenges that he could not control. As soon as he was born he had tubes being shoved down his throat and needles stuck in him numerous times a day. Jimmie came out of this fight with "a will". Jimmie had SUCH a "will", such a fighting spirit that it must have contributed to his success. He blew away the accepted expectations and statistics that are pronounced over the head of every 24 weeker. It is now this "will", Jimmie's "will" that is exerting control in one area that he can. He does not HAVE to suck and swallow, he can, but he does not *want* too. He is too young to reason with. We cannot say, "Jimmie if you do not drink your milk you will slowly waste away..." and have him understand obviously . . .
He has no true oral aversions, he has perfect even amazing tongue coordination and movement. He swallows beautifully, he can suck . . . but none of that matters. Though his body is not weakened or really struggling there are also psychological effects from what Jimmie has endured in his 9 months. But even as the effects are becoming clear it is just a sign of his amazing strength and his *will*. This is not a BAD thing. This is the stuff that kings are made of. This too shall pass. Jimmie will eat and drink enough by mouth someday to live on. And this "will" he has- will serve him well! He will be a great man.
If the g-tube allows the struggle to fade away, his nose and throat to be free of this tube that has hurt and traumatized him then the g-tube is a *good* thing.
Rachael has done absolutely everything humanly possible to make sure they were not resorting to a g-tube when they shouldn't. Her diet, the naturopath, study on tube weaning, OT's -too many to keep track, TKM, enzymes, probiotics, the search for a supportive Doctor, Dr H. (he's AMAZING). She has had patience, she has persevered, she is incredibly stubborn, she is an unbelievably AMAZING mother. I am in awe at how hard she works for her son. She has the strongest "will" I have ever seen . . . well . . . wait . . . and now we see why Jimmie is the way he is.
Mom got some perspective this weekend. She has recently started treating a new client with TKM. She is a dear woman, who as it turns out used to be a NICU nurse at Children's. They had a time of sharing during a session yesterday and it was during that time mom discovered she used to work in the NICU. So mom began speaking of Jimmie. She told his entire story, she told of Rachael's struggle of late with his drinking, she told of finding Dr. H. (This woman knew Dr. H. and RAVED about him.). Mom's client was amazed, in disbelief. She said, "you are saying he has never had a surgery? He had no ROP? He had no NEC? He had low oxygen needs? He didn't have a PDA? He had no PVL? He had no brain bleed? He has never had an infection in his lungs?" She was just shaking her head in disbelief. Then she said, "this (g-tube) may seem bad or like a failure, but this is incredible! And even the circumstances for the g-tube are great!" She said, "I am not trying to minimize your pain, but Jimmie is extraordinary, compared to what I saw every single day- this is NOTHING! This g-tube will be a step forward for Jimmie! It will help with his behaviour . . .It will help his psyche."
This was exactly what mom needed to hear right now and of course she shared it with Rachael in the hope that it will help her have peace. We are sad he has to have a surgery for this, another hospital stay . . . that is disapointing. Rachael needs to grieve this, but pray that she can pass from grief to relief. Pray she'll have peace. Pray that Jimmie will handle the surgery and recovery well. Pray that once the NG is not torturing him anymore and that the pressure is gone that he'll change his mind about drinking. Pray for no reflux and that his gastrointeritis would heal. Pray that Jimmie stays healthy.
We'll know more details about the g-tube after Dec. 15th.
Thank you for fighting for Jimmie! He is the coolest kid! (-:
Speaking of perspective . . Rach sent this picture of Jimmie's preemie onsie next to the one he wears now.