Well I think that maybe, just maybe the doctors are getting their acts together. On Wednesday they came back and started to talk again about going home. I told them that if they made sure the discharge papers said that he was having cyanotic episodes then I would take him home. Well needless to say I didn’t see the doctor again until Thursday. They know that they cannot send a child home that isn’t stable.
I was also told by the doctor on Wednesday that one day soon I need to start advocating for A. I think I almost fell out of my chair. I asked if she was kidding and she said no. I said that from day one that is ALL that I have been doing. I haven’t stopped advocating! And as far as I am concerned I advocate WAY too much in my mind. I shouldn’t have to fight and fight to try and get answers for A. She then told me that doctors are always going to come in and want to do tests and that isn’t fair for me to continue to let this happen. She said at some point I need to start advocating that enough is enough. WHAT?! But no one wants to do tests. And then she told me that it isn’t fair that I am requesting all of these tests for him. In particular the probe that he is having done on Monday. She said it is unnecessary testing that I am willing to put him through. Now give me a break. The last thing I like to see is A having anything done. It is hard for me not to get emotional when they take blood! But I feel the probe IS necessary to see if he is refluxing … end of story.
After some more fighting about the echo cardiology finally (but reluctantly) agreed to do an echo. So that was done yesterday and from what I heard last there was nothing seen. This is wonderful news! Just another thing that I can rule out.
Genetics came up in conversation again and she didn’t feel that was necessary either. I was confused because I had another doctor mention that A could have some sort of genetic mutation. She told me that the next time that I was pregnant I could just have an amnio done to tell me if anything was wrong. I told her that I couldn’t do that. I already had one preemie and there wasn’t anything that I would EVER do to risk that again. She said if I had it done early enough then it would be okay. Ummmm NO!
Well guess what? Genetics is going to be doing a consult. They came up yesterday but will be coming back on Monday to speak to me.
I also told the doctor that I felt that if A was “typical” then they would be doing everything possible to try and figure out what was wrong with him. That if he wasn’t a preemie and didn’t have cerebral palsy they would figure it out. I really am getting the feeling that they look at him as TOO disabled. But A is my child and that doesn’t matter to me. He is my life and I will continue to fight for him as long as I have to. I think they are starting to realize this.
He continues to have episodes. It seems odd too that most times they are at 2pm and 10pm. I can’t seem to figure out what is going on at that point that would cause this to happen. Two nights ago he had one that really scared his nurse and she is a nurse that usually works in the ER. This says a lot to me. Today he had one for about thirty minutes where he didn’t come above 60. I just don’t know what to think about them. All I know is that they are very hard for me to deal with and I myself feel really scared at times.
Now for some long overdue pictures…
Lately there has been a lot of talk going on in blogger world about premature babies being called fetuses. As the mother of a premature child this is heartbreaking to think that some doctors still consider a living, breathing child a fetus. However in the medical world there is ALWAYS going to be controversy over any topic that is to be discussed. Many preemie moms have blogged about there disgust and their anger with premature babies being called fetuses. On one blog I had made a comment that the anger that they feel towards this is probably like the anger that I feel towards these same moms worrying over the possibility of their child being disabled later on in life.
It was after this comment that I received quite a few emails from preemie moms telling me that they never thought of how their constant worrying felt to a mother of a child with special needs. In many blogs that I read I find that so many people are against the idea of having a child with a disability. There is also always the discussion about the doctors telling parents that they can discontinue care because there is a good possibility that their baby will be disabled. I have also read a blog where the parents chose to discontinue care on two of their preemies because they had grade three and four brain bleeds. Their exact words were “we chose to discontinue treatment to put them out of misery.” I have also read a parents words stating that “we chose to discontinue care to end their suffering.” WOW how can a parent know how the baby is feeling. How can a parent discontinue care because there is a chance their baby will be disabled? I say chance because there is always the possibility that the doctor ISN’T going to be right. I also know two former preemie boys that had significant brain bleeds and are pretty much the typical child.
When I read things like this it breaks my heart. It is hard for me to feel for these parents when they are the ones that chose to stop care. They are the ones that decided that since there is a chance their child would be disabled they would rather not deal with it. They would rather not put them through the pain and suffering. It breaks my heart the most because they don’t know what they are missing out on! A is one of the happiest kids that I know. And I am not just saying that because he is my son but because it is the truth.
It also breaks my heart because a child is a child and it shouldn’t matter what is wrong with them. It shouldn’t matter if they aren’t “perfect”. That is why we as parents are supposed to love unconditionally. Choosing to end a life because of the possibility of a disability is not unconditional love. Unconditional love is standing behind your child through thick and thin and loving them no matter what.
Now, not to sounds heartless, but I totally understand that some parents have to make this hard decision because of the significance of the brain bleeds. I understand that some preemies are very sick and have absolutely no chance at living. I feel for the parents who are told that their son or daughter has absolutely no chance because it is something that I cannot even imagine dealing with.
But to make the decision based of the fact that there is a “chance” is just not right. I have also been told that I must have worried while A was in the NICU about the future he would have. I was thinking of this last night. And actually, there wasn’t ONE time that I worried that A might be disabled. I think the only worry that I ever had was that he wasn’t going to make it out of the NICU. Spending 227 days in the NICU and having date after date given to you about when he can go home by and not making those dates was heartbreaking.
We had one meeting with one of A’s amazing doctors near the beginning and we were told that there was a good chance that A would be disabled. A good chance that he could have vision and hearing issues. He was a VERY, VERY sick little boy and there wasn’t much hope. We had the choice to continue with treatment or to end treatment. There wasn’t a chance that J and I were making that decision. We wanted everything done for A possible. J and I thought no different after that meeting and knew that whatever was to be would be. No matter what was wrong with A we wanted to have him in our life. It didn’t matter to us what was wrong with him in the future. We lived for each day in the NICU and we still continue to do the same thing. You can’t always live life looking ahead. The best times are when you just enjoy each moment of each day.
Now, I do know that for parents of preemies it is normal to worry about their next growth and development check up. I know that there are many that worry their child is behind. And when I read constant worries that their child may have CP or some other issue it hurts. I realize that parents want to have “normal” children and I realize that dealing with disabilities can be scary and difficult. At the same time though, it doesn’t change how you feel about your child. It doesn’t change the love you feel and the joy that they bring you. And honestly I feel that we as parents of disabled children are able to enjoy more than the average parent. I say this because everything that our children do is amazing. We don’t take one little thing for granted. Parents expect their children to do things as they age and they expect this to be on time. Disabled children however do not have a chart to go by. A rolled from back to tummy for the first time a couple of weeks ago. He is 26 months old. I was ecstatic! To the normal parent this is late and is just expected of their child.
A ate three teaspoons of baby food three weeks ago. This was the first time in six months that he took ANY food by mouth. I had the video camera out, I was taking pictures, I was phoning everyone, I was overjoyed. Once again parents don’t realize how great it is to have a child that eats normally. It is expected.
I just hope that I can help at least one parent realize how good they have it. I hope that the next time their baby won’t take a full bottle that they are thankful they are drinking from a bottle and not through a tube into the intestines. I hope that the next time their child does something new they are excited and enjoy the moment. I hope that the next time their baby wakes up twice in one night they can hold them and love them and not be upset that they didn’t sleep through the night.
I also hope that any new preemie moms can learn to enjoy each and every moment that they have with their precious tiny babies. You never know what life is going to throw your way and if you worry too much about later on, you might not even have later on to worry about. Sit with them, read to them, sing to them, talk to them, love them and do everything that you can. Be their biggest advocate and fight with them.
I have so many people ask me “what is wrong with him?” Nothing is wrong with him. I have the people who are told that he has CP and they say “awww the poor thing.” No, not the poor thing. He is happy. He does not know any different than the life that he lives. (And as you CP mommies would say “Poor baby my ass!”)
A has taught me so much in life. He has taught many others in life a lot as well. When I have the chance I try to educate people. I try to help people realize that the disabled aren’t any different than you or I. Sure they may not walk, they may not talk, but they do have feelings and I just wish that the fear of disabled people was one thing I could change. So many people are afraid because it isn’t something that they see all of the time.
I used to find myself explaining the whole story of his life to anyone that asked what is wrong with him. However as time has gone on I have found that I almost forget that he has a feeding tube when we are out and people are staring. I almost find myself asking what they are looking at. I absolutely hate how people stare at him as we walk by. Do they stare at every single child that they see? No, but A is different so they do. Sometimes I wish I had a sign telling people to quit being so rude and just continue walking.
I am very proud of A and love him the way that he is. I know as he gets older things are only going to get harder because things will become more obvious (the wheelchair) and he is going to grow up. I want him to live a normal life. I want to see him treated the same way that he would be if he wasn’t disabled.
No one knows what the future holds. But there is one thing that I do know, and that is I am so happy that I never chose to discontinue care because I would be missing out on the best part of life. A.
And besides, who wouldn’t want to watch this precious boy sleep?