Some people have commented that I seem to be "so strong" and really keeping things together. I'll let you in on a little secret though, Its mostly an illusion. you can smile when you need to, you can say "were just taking it a day at a time" when you just can't find it in you to talk about it one more time with one more person that day. You can walk around and manage to get through the day and remember very little of it at the end. I think its simple preservation at times like these that you can spend hours or days pretty much numb. People say "I don't know how you do it". But the simple answer is, you just do because you don't have a choice. You could do it too.
I think one of the toughest things is all the uncertainty. Its uncertainty that exaggerates the fear, and adds to the sheer exhaustion that is creeping up on us now. We are five weeks, two days into this confusing new world (not that I'm counting or anything). The days have been filled with the most incredible highs and terrifying lows, often in the same day. Just as we escape one diagnosis, we learn of another one they are concerned about. I am thankful they are being watched so closely, it helps me sleep at night. But it also adds to the constant fear of "what next?" We've lived another week full of x-rays, blood work, doctors consults. We barely have a chance to drink in the joy, relief of getting through one scare before learning of the next.
Our minds have obviously been on the next hurdle for Alex to get through, which is the surgery for his shunt. This will happen on Tuesday and will help drain the fluid that is building up in his brain, very common for children with spina bifida. But because of Alex's tiny size, they have to do something more temporary until his head grows larger which inevitably means at least another procedure for him in the future, likely several. The doctors are reassuring and say given everything he has already been through, this will really be a piece of cake. I'm having a hard time thinking of something going into my babies head with the same ease.
During this weekend, we've had several scares with both of the boys. They've each had trouble acclimating to feedings, which is literally a half teaspoons worth in their NG tubes, tubes that go right into their bellies. After several hours, the nurses check to see if they've digested any or all of the feeding before trying more, and this has been a very slow process. They have each taken turns doing okay and Mark and I get so excited, only to find out that the next time, none of it is digested and its just sitting in their little tummies. You would think that this should be just a little disappointing but just about each time they have "residuals" from their feeding, they have to have examinations and sometimes x-rays to make sure that there is not something more ominous going on with their stomachs. Preemies are susceptible to a very serious infection in their stomachs that can cause part of their bowel to die, they are not quite sure why this happens so they are just very cautious and check frequently when things are not moving through as they would hope. Ofcourse preemies in general have trouble initially with feeding and unfortunately their xrays might not look "great" for other reasons too so there is lots of angst while we wait for the next report. Luckily, the most recent tests have been negative for both of the boys so we breathe again.
The other major concern has been for Nicholas and respiratory problems. He is having a very difficult time coming down to lower settings on his ventilator and the doctors are starting to express their worries about this. Unfortunately the very thing that is keeping him alive and able to breathe is also causing scar tissue on his lungs with every breath the ventilator has to force in him. The more damaged his lungs become, the harder it will be for him to come off of the ventilator, etc. Eventually as babies grow, they usually can make enough new lung tissue that they can progress to lower settings but xrays already show Nicholas's lungs are very damaged and he is having a number of events where his oxygen levels still plummet even on these higher ventilator settings. They have diagnosed him with BPD (bronchopulmonary dysplasia)--something that he will eventually grow out of but could have long term consequences. They say its too soon to tell how severe his case will be or if he'll be able to get off of oxygen before going home, but they would like to consider using steroid treatment soon if things don't improve but they state that this treatment also brings with it its share of concerns and they don't use this treatment lightly.
In the same discussion, they let us know that Nicholas also has a hernia that will need surgical repair but they'd like to wait for him to get bigger before surgery. A part of his intestines are falling down into his groin area and may also be a reason he is having trouble passing food all the way through, so they have to manually manipulate this area for him. Apparently this is another "common" issue for very premature babies. For some reason, it was during the hernia discussion that I lost it, the tears just wouldn't stop. The poor doctor was right in the middle of telling me how simple the procedure would be but all I kept thinking of was, its just one more thing my child has to surmount, how many of these issues do our babies have to have? And how many more will we have to learn about? Isn't this the time where I can say "uncle"?
I know there are families who are going through worse than this, I feel the tension around me wherever I go in the hospital. I am grateful that my babies have a fighting chance, I really truly am so grateful. I smile when the doctors are rounding and I hear them say Nicholas and Alex's day of life..."36" because it was not that long ago that I wondered if we would get this far but some days the fear just bubbles up and I wonder "at what cost?" No one knows what long term consequences all of these treatments will have on them, just the sake that they were born so young, so small, let alone that we know they were already struggling before they ever came out. I straddle the line of being filled with such happiness and gratitude that they are here with us and tremendous worry and fear at what their lives will be like in the future. I guess when I think about it, any parent can probably relate to this at some level. I think it is just heightened for us right now because of the traumatic way they had to be brought into the world.
I found the following passage in a book today and it really resonates with where we are right now, and I think she describes this place more aptly than I could:Its as if I am walking through my life and the path I am on and all I can see to my left contains all the blessings and wonderful possibilities for my family and our lives and our future. When I look to the right, I see a terrible cliff dropping off into disaster. The cliff was always there, is always there for everyone. Anything can happen. But before the losses we have experienced, I was able to concentrate on the path I was on and all that lies to the left. Since my experiences, I spend a lot more time conscious of and worrying about the abyss. I don't feel safe anymore, even though that safety was always at least potentially an illusion. I really miss the ability to live with that illusion.