I know it has been awhile since I last updated everyone on how the babies are doing. I usually have a lot to say because a lot happens between each blog, but I can happily say that it has been a relatively uneventful stretch of smile filled days. The babies have started LOVING play time. I mean...can't get enough of it!! In fact, I had Owen laughing so hard, I thought he was complaining, but if he could have made sounds, it would have been squeals!
Holiday season has arrived. I'll be honest, I am feeling low-in-spirit, and I can't shake it. The babies will be spending this holiday season in the hospital. Though this idea was given credence in the spectrum of outcomes possible, I had my hopes set on an apartment full of squealing kids and overflowing with laughs, camera flashes, hugs, and discarded Christmas wrap. I have always been a lucidly selfish individual when it comes to delighting my children during the holidays, even when they are too young to appreciate a wrapped present - they enjoy the rattle of the discarded wrap. I love the traditions that we maintain, and the togetherness time... Sadly, my children won't be able to experience Thanksgiving and Christmas as a family unit. Dave and I will be trading off one set of boys to spend time with the other.
As I was headed to the NICU this morning, I encountered a woman in the elevator who, after asking me which floor, established that I was a NICU mom. She volunteered that they had just had their new arrival yesterday (she was the grandmother, I believe). I congratulated her. She asked me how long my baby had been in the NICU, and I sated that there were 2, and they had been in for nearly 4 months. And there was no indication from either baby that we would be home bound in the foreseeable future.
Yes. I am feeling a bit run down. I will admit it openly. Freely. gratis. I won't charge you a dime.
Last week, both boys were taken downstairs for an upper GI study. The doctors were able to gather quite a bit of useful information from Emmett's study:
1.) His small intestines function, just veeeery slowly. This is called 'slow motility;' however BECAUSE his bowels function, he had a total of 5 bowel movements as a result of introducing material into his stomach. An attempt to feed was scheduled to take place sometime this past weekend, but has not occurred secondary to the amount of bile output coming from his naso-gastric (the tube that goes to his stomach). I have an assumption that Owen's bowels are functioning at nearly the same capacity, though this has yet to be verified.
Owen's study revealed even more information about his anatomy. Owen has a fistula in the biomesh of his wound. The vasculature (blood vessels and veins) has granulated into the biomesh, which basically means that Owen's little body has assimilated the mesh, and his body and the mesh are now one-in-the-same. So there isn't necessarily a hole in the mesh, but a hole in the abdominal wound. Repair is not an option at this point as the newly assimilated mesh and granulated vasculature is too fragile to hold a stitch to close the fistula. The general consensus is that the fistula should eventually heal itself. Until then, bile leaks Into the wound dressings from the fistula, which also indicates a very minor opening in the intestinal tract somewhere, most likely where the intestines were repaired. This should also heal on its own, and again, due to the fragility of the wound, surgery cannot be performed to repair the leak at this time. All of this to say that the barium, after placement in his stomach, leaked out of the small intestinal leak, then through the fistula, and eventually was absorbed by the wound dressing.
The second portion of findings makes a whole lot of sense, but let me write a preface before revealing the findings. Owen has been struggling with breathing 'episodes' for several weeks now. It always begins with him getting upset about something, then escalates to him crying, then his oxygen saturation level dropping, his heart rate dropping, and him basically passing out and eventually coming back around after the ventilator rate and oxygen settings have been increased dramatically.
The study revealed that Owen has a hiatal hernia. In normal anatomy, the diaghragm has an opening that allows the esophagus access to the stomach. Owen's stomach protrudes through the opening in the diaphragm and is hanging out in the chest cavity, which is contributing to his breathing struggles. So, the hiatal hernia, tracheomalacia, and current infection is giving him troubles. And again, corrective surgery cannot be performed until their abdominal wound is healed.
All that said, the babies still have a significant stay in the hospital ahead of them. So in the meantime, I have been trying to make it as pleasurable as possible. I purchased (with trust funds) bouncy seats for them. And they like sitting in them. On Halloween, they BOTH were able to sit in them NEXT to each other! It was the first time since surgery that they have been close enough to each other to be in the same picture.