My baby boy is 1 1/2 today. I can not believe what a ride it has been. I wouldn't change it for the world, but it has not been the easiest thing I have ever done either.
Matthew came home in December at two months old from the NICU. We pretty much stayed home bound for the rest of the winter, then we were kind of thrown for a loop and had to make a very difficult decision. We had to move for my husbands job. We up and moved away from all of our family and friends. We have done this before without kids and it was a lot easier then.
Everything was going good with the move and adjusting until about September/October when Matthew started to regress pretty rapidly. Until this point he had been almost sitting up unassisted, could hold his head up, roll over form front to back and back to front, could stand with assistance for a minute or so, and was taking bites of food. Well, ALL of that changed. He could no longer sit up or even hold his head up. He could not roll any longer and he was not making any progress forward in therapy. This was very concerning to myself and his therapists. We were all at a complete loss as to WHY he was doing this. In the meantime I had been trying to find a pediatrician that would be comfortable taking care of Matthew. I finally found one and took him for his 1 year appointment and she measured his head and it was really big. He is only in the 20-25% for his height and weight, his head was off the charts big. She referred me to a neurologist so I called to make an appointment. The first appointment they had for an "urgent" request was 2 months out. So we kept the appointment and just kept a watch on him. We continued to go to his pediatrician for his RSV (Synagis) shots and she would measure his head everytime and it just kept getting bigger. She finally told me to take him to the ER. This was in December.
So I waited a couple days and took him. I had Finn with me and my husband was in town, but in LA which without traffic is a good hour away from the hospital. With traffic it can be hours away, well that was the case this day. The boys and I get to the ER and I tell them I wanted a CT scan for Matthew per my pediatricians request. We got into a room very quickly and within 10 minutes we had seen the ER doctor and within 30 minutes we had been taken to get a head CT. We were waiting for the results, which they claim take 45-60 minutes to come back. Not the case with us that day. We had the results back within 20 minutes of the scan. We had a confirmed diagnosis of Severe Hydrocephalus (water on the brain). A Neuroseurgeon PA came in within an hour and had stuck a BIG needle into Matthew head to draw out CSF fluid from his brain to check for any infection. I was then told that he was going in for surgery to place a shunt immediately. The only thing we had to wait for from that point was the results of the fluid. No infection, so surgery was a GO. Well from the time we stepped foot into the ER until he was being wheeled into surgery it was less then 4 hours. Now remember I told you my husband was in LA, well he did not make it to the hospital in time for surgery. One, because he was taken to surgery so fast and two, traffic was awful that day. SO I had Finn with me the whole time. He had to sit in with the nurses while I went into recovery with Matthew. Not the most ideal situation, but we made it work. Jim finally showed up while Matthew was still in recovery. So Finn did not need to be with the nurses any longer. Matthew was then admitted to the PICU for the next 6 days. (Needless to say we never saw the neurologist, we are strictly followed by a neurosurgeon now.)
We went to the neurosurgeon for a follow up on December 21st. Well to my surprise once again we were told we were getting admitted back to the hospital, due to an infection in Matthew abdomin. So again I had Finn with me, since we do not have any family here to leave him with for appointments. We get to the hospital and Matthew is wheeled back into surgery to externalize his shunt for a few days and then go back into surgery to re-internalize it. We ended up spending our Christmas in the hospital. Which the year before we made it out of the NICU right before.
Since that last surgery Matthew has made great progress forward. He was able to hold his head up almost immediately after. He can sit up is rolling over again and is starting to put some weight on his legs. Still not even close to standing on them, but will bear weight with assistance. He is talking up a storm. He has about 15-20 words he says all the time and he will try to say anything. It has been quite reassuring to see.
Feeding is a different story. He has a LONG LONG way to go there. That is our biggest battle right now. Hopefully one day we can get him to put some kind of food or drink in his mouth without gagging or retching. Until then we will just keep up with his feeding therapy and hope for the best.
Now that I wrote a novel, the whole point of it is to say that we do not have to go back to the neurosurgeon for a WHOLE Year. So after the last few month of pure craziness this makes me very happy. It makes my heart very happy to know that my boy is making such great progress. He will overcome all the things thrown at him. He is one strong little boy. Not only is he strong he is the sweetest little guy, with a bit of onery starting to come through, which is a welcome sight.
So Happy Half Birthday to my little stinky guy. Mama loves you to pieces.
