The calendar says I will be experiencing increasing feelings of excitement and anxiety. If I were still pregnant, I would be 36 weeks now. Don't ask me why but I've never turned off my weekly pregnancy updates after the boys were born. I guess part of me wanted to remember our previous timeline and what they would be up to if they were still in the womb and compare to what they are doing now. Its strange that the doctors still refer to them that way as well. Every day at doctors rounds they introduce the boys as whatever gestation they would have been. Today was "36 weeks and 4 days gestation" as well as number of days old (58 today). My pregnancy calendar says they should be about six pounds now and that their kidneys are developed and that lungs continue to develop. In reality the boys are probably growing at a better rate in the world than how they were doing inside of me but they are still far from where they should be given the rocky road that they are on (just under four pounds right now). And even while that is still sooooo little, its so far from where they've started!! I know they will be "behind" for quite awhile but they are blazing their own trail. Somehow I need to figure out how to get on their timeline, instead of expecting them to be on ours!
They are now eight weeks old and still having difficulty with "eating". They are still not tolerating feedings very well and both have feeding tubes in. They've changed their formula and have added other medications to try to stimulate their intestines to get working but its a very slow process and we've stopped and started feedings about four times now so we are feeling a little restless. We know that they need to get eating in order to get bigger and stronger, to have a better chance at fighting off infections and to get off of all of the IV nutrition which has side effects on their systems, liver for instance when used long term.
We are very thankful that both our boys have turned the corner this week with infections and acting like themselves again. Nicholas will continue antibiotics for another week from his staph infection but is doing so much better. Doctors never did figure out what was going on with Alex's tummy but the xrays continue to look better so they will continue antibiotics as a precaution and go from there. Mark and I are finally getting to hold the boys again about once a day now that they are more stable and its so good to be able to cuddle and comfort them. I long for the day that we won't have these restrictions and then it will probably take a crane to pry them from our arms (or I suspect with some gentle pushing from family members who have been waiting patiently when we finally get them home)!
On this weeks agenda for the boys: Alex will be having an MRI on his hip tomorrow. It looks like he has a dislocated hip, not uncommon with babies with SB. He was probably born with this although I'm not sure why it wasn't picked up on earlier with the litany of tests he has had. It doesn't seem to be bothering him much but we'd like to know what needs to be done in the way of treatment for this, sooner rather than later so he doesn't end up in pain or impede whatever function he has in the future. We are still figuring out what he needs regarding his bladder and kidney issues. They are cathing him now every eight hours and may reduce to every twelve hours if he continues to do so well. They just want to make sure that his bladder continues to empty so it reduces the impact on his kidneys. But the great part is that right now he is doing most of the work himself. Neurosurgery also saw him a few days ago and says the shunt is working great for now. When they placed it, they stated that this temporary shunt might work for several weeks to several months and we are happy for every day he has a chance to get bigger before any more needed procedures!!!
Nicholas is doing very well off of the ventilator and getting over the infection. His biggest job right now is to really just tolerate the tube feedings and get bigger and stronger. But he has another hurdle this week ofcourse too. The doctors have been trying for the last several days to place a "psc" line--basically as I understand it an IV that goes deeper and lasts longer than a typical IV which can handle the IV nutrition and other medications that he needs throughout the day. Unfortunately they have been unsuccessful in getting one into a vein and my poor little guy is getting marked up. Today they even got an IV specialist to come in, they gave Nicholas some sedation and tried several spots, including his little neck but without avail. His veins are literally shot. They will try one more time tomorrow but have prepared us that they might need to resort to actually doing a surgical procedure where they have to actually cut him to get closer to a vein. Even as we get over some very big hurdles, the obstacles seem to be just lining up, lurking around the corner. I'm just trying to remind myself that they will not remember any of this and hopefully one day it will even be a distant memory for us!
We haven’t gotten a lot of pictures lately with the boys being in isolation, but here are a couple of previous ones to share…….
Mommy and Alex: I love this picture, it looks like he’s smiling and NO, I don’t care if it IS gas :)!!!
Alex with his favorite binky, I don’t think he minds that it takes up half of his face. And he’s not one to fuss over much EXCEPT if his binky falls away before he’s ready to be done with it.
Hey, who is that handsome guy with my Nicholas? hmmm...that may be my hubby, not sure. We only see eachother awake these days in the NICU so its hard to remember, ha,ha. He sure is pretty cute though, huh?
My other sweetie pie Nicholas lounging on the job.
Remember when this little hat used to practically fall to his shoulders?