As The Smith's say: "How Soon Is Now?"........

NICU life is a roller coaster. This is said over, and over and over and over again. By doctor's, nurses, social workers, and other preemie mommy's. The past week we have navigated the following:


1. Surviving shunt surgery: Colin recovered well from his surgery, and was off his breathing tube and back to the nasal cannula within 2 days! Doctor's and nurses were VERY pleased with his progress in this area. While I'm still a little scared to hold his head with the shunt, everyone in the hospital says that it doesn't hurt him and holding it won't hurt.


2. Nasal cannula: Doctor's are still trying to wean Colin off of having to use supplemental oxygen, and as of now, he is on the lowest setting. The next step would be taking it away and letting him breathe on his own! We are so close we can almost taste it, but for me (and mostly Colin), this will be a whole new world. Breathing on his own! Wait, can he really be ready for this? I mean, you want something for so long, but then you also become dependant on it, that you wonder if he can survive without it. Hoping that when it goes away, it doesn't make things harder.


3. Vaccines: Doctor's have been bringing up the fact that now that Colin is 2 1/2 months and over 5lbs, he should be ready for vaccinations. This has been a source of fear and uncertainty for Rich and I. While I don't believe at this point in the Autism-vaccine link, I am worried about the possible neurological effect that getting so many vaccines at once can do to his brain. Because Colin has one of the most severe brain bleeds, I look at his brain as such as fragile and delicate organ that needs to be protected and strengthened as much as possible. Could vaccines do more harm to it than good? Long talks with his neonatologist team and pediatrician's are on the agenda for the next few weeks. (And if you are slightly interested, here is an article that I felt was pretty well balanced in laying out the facts. A User Friendly Vaccine Schedule)


However, the one issue that has the potential to bring so much joy or sadness is the task of teaching Colin to feed by mouth. For most new mom's, teaching a newborn to breastfeed is always a challenge (so I hear!). But teaching a preemie is sooooo much more of a challenge.


See, from birth, Colin had a breathing tube in his mouth, stuck down his throat, 24 hours a day. So the only way he has been fed from day one has been a feeding tube placed down either through his throat or nose (currently it is through his nose, so that his mouth is completely free!).


For some babies, having things in their throat for so long can make them develop an oral aversion. How can we know if he has an oral aversion? Only by trying to teach them how to feed by mouth can we learn if they have an oral aversion. So for now, time will tell with Colin.


Second challenge, being fed with the feeding tube. Up until this point, Colin has received all his food from a feeding tube, on schedule at 12am, 3am, 6am, etc. No work on his part, all he has to do is lie there and wait for his belly to get full.


So now, here is his mom shoving this HUGE "pacifier" (aka, my breast!) into his mouth, and is trying to teach him, "Hey, guess what, your food can come from this thing from now on. Wanna try?". I'm sure Colin is saying, "Yeah right lady, I'll just wait for my belly to fill with the yummy food right on schedule, and maybe if I want, I'll suck on that 'large' pacifier of yours."


And last challenge of all (but it can be a big one), is the fact that he has a disadvantage because of his brain injury because of the brain bleed. While we can't know for sure, he may not have all the neurological resources to be able to quickly understand how the whole process of breastfeeding works, and may not be able to grasp the most important skill of "suck, swallow, breathe".


So how do we overcome these challenges? With EXTREME patience. Because while I'm sure this process is hard for a mom, I feel it is even harder for me knowing that I have these extra hurdles to overcome. Because if he can't master feedings by mouth, then it delays him coming home, or could even mean he would have to get a G-tube (a permanent feeding tube) if we want to take him home. If I could have a shot of alcohol or take a Xanax before our lesson, believe me, I would!


However, I have to say to myself, "be patient, let it flow naturally", while the back of my mind is saying "how soon is now?" These two struggling voices in my head really get on my nerves, you know?


So for the next few weeks, or months, or who knows, if I'm lucky, it could be days, I will constantly try to find myself in a state of zen, trying to teach my son how to feed. And all the while, I will hope we have no other setbacks, like infections, or breathing problems, or vaccine complications. Because like a house of cards, if one falls, it all can fall down. I won't even think about a delayed discharge from the NICU or permanent feeding tubes. 


I'll just play this song and get through each day..........