It's almost time!!!!!!

As I write this, we are being told that there is a 90% chance that we can take Colin home today. Why not 100%? Well, when you are taking a preemie home from the hospital, apparently there are a MILLION things that need to be signed off on. Reports, equipment to be ordered, exams to be done, etc. 


So although the only thing we are waiting for right now is the home medical equpiment to be delivered to Colin's hospital room, there could always be one last hiccup. For now, I am just going to go forward as if Colin is going to come home. And you know what? IT'S SO FREAKING EXCITING!!!!!!


I keep telling Rich, "Is this how parents feel when they are about to give birth?". You know that when you come back to your house, you are going to have a baby, and things are going to be SOOO different. Are we really ready? I sure hope so!


So after Colin's triple whammy surgery last week, the rest of the day of his surgery was rough. The doctor's were able to move quickly and got Colin in for surgery first thing in the morning on Tuesday. Surgery went great, and Colin was back in his room by 11am, OFF THE VENT and right back to using the nasal oxygen cannula only! When you were on a breathing tube as long as Colin was, and you make it back from anesthesia not having to use the breathing tube after a surgery, it means you recovered real well!


However, he was in pain, which was a first for all of us. For 6 hours, I stayed right by his crib, and while I couldn't hold him, I could only touch his head and legs and try to calm him as much as I could. It was tough, because every 2 minutes, he would cry in pain. The doctor's had prescribed morphine for his pain, and kept giving him a dose every 4 hours, but it didn't seem to do too much. 


By 6pm, he seemed to calm down, and finally got to sleep soundly with no cries. I knew we did the right thing for him, but inside I was so heartbroken that I had to put my little guy through so much physical pain. 


The next day, all that morphine caught up with him, and was making his heart slow down TOO much, and affected his breathing as well. So the doctor's were able to switch to Tylenol for pain, and hoped that all that morphine would leave his system so he could get back on track. 


But it's amazing how resilient babies are, because by that next afternoon, Colin was awake, alert, looking around and all around calm. I love this little guy!

See Colin's G-tube near his diaper?

So as quickly as Colin recovered, then it was just a matter of time to let his body heal, and then start feeding him through his G-tube. But during his recovery, we quickly learned that my little guy was a piggy, and had gotten used to having a full tummy all the time. 


When his feeds had to stop for the surgery and then food was started out slowly, Colin was NOT happy! It was actually kinda cute. He would attack his binky (pacifier) hoping that milk would come out of it, and get frustrated when it wouldn't comply. 


By Friday, our occupational therapist said it was ok to let Colin breastfeed for no longer than 10 minutes so that he could still practice eating by mouth. Colin latched on quicker than he ever had, and was going to town! At the end of the 10 minutes, I had to stop the little guy, and boy, was he mad! It was a side to him that I never saw before, and I'm quickly getting to know!


I've always known Colin was a fighter. Obviously he couldn't have made it this far without that quality. But he never really showed that side. Now in the past few days, he really shows his "demanding" side, and I have to say, I LOVE IT!!!


So now what? Well, once Colin comes home, we have ALOT on our plate:


1. Quarantine: If you were able to attend my shower, you learned how Colin being a preemie is much different than other "normal" babies. While the old adage "you have to expose them to germs" usually works for other kids, in Colin's case, it could be detrimental. His compromised immune system and lungs still need more time to grow, so for the first 2 years, his contact with the outside world, espcially during flu season, has to be limited. However, he can still go out for doctor's appointments, which brings me to #2......


2. Doctor's appointments: Colin is going to be seeing the following: Pediatrician, Pulmonologist (for his lungs), Eye doctor, Neurology (for his brain development), Neurosurgery (for his shunt), Gastrointerologist (for his G-tube), AND Occupational/Speech Therapist (for his eating and muscle development). Whew! As he gets older, he will start to see less and less doctor's, but for now, it will be a full plate. And as many of you know, doctor's offices are germy places, so trying to stay healthy is going to be a chore!


3. Therapy: Because Colin is a preemie, he will qualify for state Early Intervention Services to ensure that he reaches his milestones, like rolling over, walking, talking, etc. We will also be looking into additional resource therapies to help Colin develop as well as he can, and since I won't work, helping Colin will be my full time job. 


4. The future: This part is unknown. As we have said many times before, because of his brain bleed, Colin is at a high risk of developing Cerebral Palsy. However, much like autism, it is a spectrum disorder, than can be either really mild, or very severe. However, brains are very plastic, and have huge potential to rewire themselves. Gabby Giffords, the US Senator in Arizona that was shot, is a prime example of how the brain can recover with extensive therapy. And with Colin being a baby, he has an even greater potential to do so.


This journey is far from over with Colin coming home, but it is interesting to see how the path is going to change. I am forever grateful for all the wonderful friends and family who have been a HUGE source of support and understanding as we have made it this far. I'm looking foward for Colin to getting to know all of you, at his own slow, safe pace with your understanding. 


I am also grateful for the wonderful blessing of Rich's business that is allowing me to stay at home with Colin and take care of his needs. I have meet so many parents in the hospital or in other parts of the country who don't have this blessing, and I pray for their needs every day. 


Mostly, I am so, so thankful to be here today with Colin. In the beginning, we had no idea how far we would make it with him. And to look at him to today growing in leaps and bounds is so wonderful! I would do this all over again just to be able to look at his cute face every day. And I'm excited every day for the future, and what it holds. Time is all we have now.........

Hi Mom! I'm ready to help you give my medicine!