Never in a million years when I thought about having kids would I have thought that it would happen to me. That is what most pregnant moms think. “It won’t happen to me.” But it can. Over 13 million babies are born premature throughout the world every single year.
A’s chance of survival when he was born (based on stats) was only 39%. I am sure that his was actually less because he never had time to get the steroids to help his lungs. From the time I got to the hospital here in town wondering what was happening, to the time I delivered at a hospital 45 minutes away was only about five hours.
A fought like I never knew such a small baby could fight. He is alive because of his fight. He is the strongest boy I know.
I never thought I would have to deal with another 24 weeker, but realized when I had H at 18 weeks 4 days that anything can happen. You just have to take the hands that you are dealt in life and try to learn from them. I have. I truly truly believe A was born to teach so many people things about life. And H, well I think he saved the life of another little boy.
I hope that one day soon I will be able to try again and not have the heartache of the NICU or the death of another child. I think we have had our fair share of crappy dealings in life and we can expect nothing but the best next go!
And today I think of all of the doctors and nurses who kept my boy alive. My biggest thanks and love goes to Dr. Shah, Dr. Sant’Anna, his primary nurse Danielle, DJ, Joyce, Marg….without all of the love and support you gave to A in his life I know he would not be here!
And my biggest thanks to A. You have taught me more than anyone could in a lifetime. You have made me slow down in life and enjoy things I never maybe would have.
You make me laugh. You make me cry. You are just the most perfect child and I am so blessed. Many pity me, pity us but they don’t know what they are missing out on. What you have taught us could not have been taught with a full term, healthy child.
You have made the love between daddy and I grow to heights I didn’t think love could go. I have never been so in love with someone as I am with him. And the love that he feels for me is just as equal.
You are the most amazing child and we love you with all of our hearts!
Is about the only thing I have been feeling lately. You know, I look back to the days of the NICU and you think for some reason when you leave there that things are going to be okay. Things will never be like they were there. But that is so wrong. I find myself more worried, more stressed and more confused now when A gets sick than I did way back then. It totally sucks. I mean for real. He is going to be four in June and yet the nightmare continues. The worrying every time that he gets sick. It is always in the back of my mind that something horrible is going to happen. That my absolute worst fear will come true. That I won’t have this smiling, adorable little guy here. No mother should have to think of this when her child gets sick. But it is just yet another crappy thing about being the mom of a preemie, the mom of a child with special needs, the mom of a child with many health issues. We are not oblivious to ANYTHING and know that ANYTHING can happen.
So A has been sick since the 16th of February. Februay 18th I was told that he had pneumonia. Last Wednesday he seemed much better. Same goes for Thursday. Thursday night however his nurse woke me up and told me that she thought he needed oxygen because his sats would not stay up. (She does not have an order for oxygen therefore has to wake me up in these circumstances.) He did fine on 1/2L.
Friday morning he is fine. Doesn’t even need the oxygen. Friday was a good day. He had three workers here and did great with all of them.
Friday night went to bed fine. (I did have him on 1/4L because it seemed that at nights was when he was needing that little bit of help.) Wow, what a crazy night. He was AWFUL. At 5am I really started to get nervous. He was not going above 80 and if he did it was not for long. I had him up to 2L and it was not doing ANYTHING. I held him and that didn’t help. Finally about 6:30am he settled back down and was satting 90ish on 2L.
By 8am I was in his room getting him up yet again freaking out.
Talked to my parents around 9am and thought I needed to take him to the hospital. I figured I might as well change his oxygen tank as I knew that it was getting low and wanted a full one for the trip. Shut off the tank and then went downstairs to get a new one.
Come up and he is satting in the 90s with NO oxygen.
Talked to my mom and told her that I wasn’t going to take him. Pretty sad when you hum and haw over taking your sick child to the emergency because you know pretty much how useless it is going to be!!!
Had an okay day yesterday. Only needing 1/4 or 1/2L to sat well.
That was until he wanted to sleep. I held him (he only cuddles when he is sick!) and he fell asleep. That lasted about ten minutes max. As soon as he goes to sleep the difficulty breathing and crappy sats start.
Stayed up for the rest of the day. Was good.
Last night he was exhausted and I put him to bed at 10pm. Was asleep within 15 minutes, on 1/2L with sats in the 90s.
I headed to bed as I could barely keep my eyes open. Daddy stayed up so that I could get at least some solid sleep.
3:30am I am up to the lovely sounds of the monitor. From 3:30-5:30am I did everything I could think of. Turned up the oxygen, gave him a breathing treatment, did nose drops, checked his temperature, did some deep suctioning. You name it I tried it. Sats would NOT come above 90. He was snorty, tired and just having a crappy time. I picked him up hoping it would be a bit better. He was good until of course he would fall off to sleep.
I just held him and cried my eyes out. I am sure that my pregnancy hormones do not help with this, but I friggin HATE what my poor guy has to go through. It just isn’t fair. It sucks and that is the bottom line. And it sucks even more when I am worried but yet scared at the same time to take him in. I mean really what are they going to do different for him? The only thought I had was that they would most likely vent him and because I know he is fine awake I am not okay with that. It freaks me out. I hope to God that I never ever have to see him vented again.
So ya, I just cried and cried. Told him how sorry I was. How angry I was that no one ever helps him. Sorry that he suffers way too much for being a three year old. How I felt like a shit ass mom for not being able to make him better.
Life really sucks sometimes.
But I try to remember the bright side. I have my son here with me. I can love him, cuddle him, kiss him.
And then he smiles.
Well since it was just Thanksgiving weekend I thought I would do a post on what I have to be thankful for this year.
First, my husband! YES, I can finally say “husband”! He is amazing and would do anything for me and anything for A. He tells me AT LEAST once a day (and everyday-no joke) how beautiful I am and how much he loves me. He understands that although my life seems to revolve around just A that I love him just as much as he loves me. A relationship will always change when you bring a child into this world. A relationship changes even more when you bring a preemie into this world. And it changes even more when you bring a special needs child into the equation. But throughout our ordeal and A’s approximate 371 days in hospital we have held on. We have overcome SO much that many probably would not have been able to. Did you know the divorce rate for families that have special needs children is about 85%? But instead of not being able to work things out we did the opposite and got married!!!! Sunday August 17th 2008….one of the greatest days of my life!
A. WOW what this child has brought into my life is just amazing! He has been a fighter his entire life and that has not changed. He struggles with things every single day. He endures many painful, uncomfortable procedures but yet he still smiles. He is SO happy that I sometimes forget how hard life is for him. A is the most determined child that I know. He definitely knows what he wants and he is always trying to GET what he wants. Or DO what he wants.
I know that we all don’t know what life holds for my little man, but one thing is for sure….he enjoys life every single day! It is very hard for me to think of the future and not get worried and scared but his smiles, his love, JUST HIM take those fears away most days.
My family. My parents are amazing. They have done everything and anything for me. They have always supported me 100% and believed in me.
My brother and sister.
My new sister.
My extended family.
My wonderful friends who I do not see enough of!
All in all, an amazing life!!!!!!!!!!!!!!!!!!!!
What a day!!! I have been smiling since about 5pm tonight because I am SO happy that someone finally is listening to me. Someone finally agrees with me. Someone thinks what I do. And this someone said it before I said what I thought! What you ask?
Well this morning the genetics fellow came in to talk to me. She took the full history of my health, my family, J and his family. Then we went onto A from pregnancy until now. She was very impressed about how much I knew about his NICU stay, what infections he had, the dates and just all of the issues in general. She then told me that she would be speaking to the genetics doctor and they would come back.
At noon daddy went in with A to have his ph probe placed. It was not fun at all but it will be coming out tomorrow afternoon and I cannot wait to see the results!!! The doctors are positive that they won’t see ANY reflux where I think different.
Anyhow the genetics doctor came in along with the fellow I spoke to and a resident. He was very caring and concerned from the minute he walked in. He told me that he had heard all about me and what a wonderful mother I was. Yep, I try to be I told him.
We then laid A on the bed and I took his clothes off. Within about thirty seconds of him looking at him he said “this kid doesn’t have cerebral palsy.” Hmmm wasn’t it not too long ago I was telling everyone how his CP just isn’t typical. How he just doesn’t present how he should. I was blown away. I then told him that the doctor that diagnosed him was the only one that would say CP. He said “of course…you have a former 24weeker that isn’t meeting milestones and you label them CP…it is the easiest thing for them to do.” WOW!!!!!!
He then told me that he thought of course that A had some effects from prematurity but said that with what he was seeing he didn’t think it had anything to do with it. OMG!!!! Have I not been saying for months and months that I am so tired of docs blaming everything on his prematurity?! His CP?! I thought I was going to burst into tears!!!!!
He also is very concerned about WHY A is deaf. He said that it isn’t normal to have a child come in after their first birthday and find out that they are profoundly deaf when in the past they had passed two hearing screens.
I told him that the day we came the docs asked me what I thought was wrong. I said reflux, airway and something no one has figured out yet. He looked at me and said “I think you are right mom. You are a great mother and I am so glad that you have fought how you have to try and get answers. I can’t promise you anything but we will do our best. A doesn’t have any features that make me think of where I can start but we will start somewhere. This must be so hard on you.” He then told me that they are going to involve metabolics as well to start with a workup on him.
I cannot even tell you how good this feels to hear what I heard today. To have someone tell me that they think something else is going on without me saying it first. I cannot wait until I see the complex care doctor tomorrow. Wonder what she will have to say?!??!?!?!??!?!?? Genetics was just coming because I bugged and bugged. She didn’t hesitate to tell us over and over that it would just be genetic counselling and that they probably would not end up doing anything more.
On the other side of it I am very scared. IF A ended up having something genetic that most likely means that the chance of J and I having another child is slim. I long for the day I can get pregnant again….have a big belly….enjoy every minute of being pregnant and then have a big fat term baby. This brings me to tears just knowing that maybe, just maybe I will never get to experience it.
Mothers know best…..that’s all I know. When are MOST docs going to learn this?
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…
Well I got the results of the sleep study today. It sure doesn’t make anything more clear or easy! So basically it shows that A has high CO2 levels like I said before. However after I left I guess his CO2 stabled out at about 56. Still a bit higher than usual but much better than 80. They tried a few more times to shut off his .5L of oxygen but then he would desat so they would have to turn it back on. They then tried him at higher amounts like 1L and 2L. This would then increase his CO2 even higher. What does this mean? Well it means that oxygen is not a good thing for A. However at .5L it is okay…just no more than that. Oxygen at higher levels than this becomes toxic to him basically. This also explains why he doesn’t do well with sedation of any sort.
This also tells them that A is requiring a higher CO2 level than normal to have the drive to breathe. They think that over time his baseline of say 45 for CO2 has risen. So all in all he needs the hypoxia to make him breathe. Confusing? Yes! But as we all know, A has NEVER been easy!!!
As well as this, the sleep study showed significant obstruction. Where exactly? Well we are not sure. They are thinking that he is pooling his secretions in his airway and some of this is going into his lungs…micro aspirations. On the video, you can see him moving around and then it is like once they are clear he goes back to sleep. What can be done for this? Nothing really. There is no way to really stop the aspiration of his saliva. Over time can this cause harm? Yes, but it is hard to say how long or when things would get worse.
They also believe there is some floppiness to his airway when he is in deep sleep. Not surprising to them considering he is an ex preemie who has cerebral palsy.
So all in all it gives at least some idea to what is happening, but frustrating because there is nothing we can do for either as a fix. I did ask why the pooling seems to have gotten worse since the fundo. That is if they think the desats during the day are related to this. They don’t have the answer, so I am hoping that maybe his surgeon can provide some input on this when we meet up next week.
I saw ENT again today and he is very concerned about Ashton hitting single digit numbers for his oxygen. He did bring up the trach again but I refuse to talk about this until we have the team meeting.
So that is about it for now….
Well another busy week is over! Wednesday A had his PT and OT here together because we finally got him a benik to try. I have been asking about this for a long time but I find that sometimes people really haven’t done the research or learning on things that help kids. Anyways, his new OT happened to have one at home when I brought it up again last week so she brought it over. I wasn’t really able to see what he did for them with it on because his dietitian was here so we were chatting while they did his physio. However I did definitely notice some more stabilization of his trunk when I put it on him that afternoon. The only problem is, this kid is the hottest, sweatiest kid EVER that it just makes it ten times worse. He weighed in at 24lbs 7oz so up three ounces which is fine with me. I am so past the gain and gain idea because I have realized that if the child LOOKS healthy then they most likely are getting enough nutrition.
Here he was on the scale. Kind of funny that he was so happy as usually he goes very stiff and starts to scream. It took about five minutes before we were finally able to get his weight as he wouldn’t stop moving he was so excited!
So here he was sitting in his chair with the benik vest on underneath his shirt. He loves this slinky and anyone who knows A knows that holding this with BOTH hands is a HUGE accomplishment! Go A!
Thursday grandma and I headed to Kitchener with A to go to Toys R Us. That store is SO overwhelming! I did find a few things for A and I am so excited for Christmas to come! This will be his first Christmas here at home and I am looking really forward to it!
Friday I took A to his ped to get the other half of his flu shot. He didn’t like it too much but he is a tough little guy so he got over it quick. I was speaking a bit more with his doctor about the spell A had a few weeks ago (he was the one that came to the ER and told me he thought it was a seizure) and anyhow he said that the more he thinks about it the more he doesn’t think it is. This was after I told him about the echo last week and how A’s sats were so bad after only a whiff of nitrous. Ugh talk about being thrown in all directions! I have some telling me seizures (funny though because THREE neurologists that have said YES this was a seizure have all said DIFFERENT types) and some tell me airway and some say reflux and some say they don’t know. Where is my Doctor House?!?! LOL
This is what I am greeted to every single morning when my little man wakes up…
Today we had a pretty lazy day. A didn’t get up until 10am and then by 11:30am he was fussing to go back to sleep. I however kept him busy and up until about 1pm and he slept until about 3:00pm. His naps lately have been AWESOME! Although yesterday he skipped his nap for the day and that is probably why he got up so late today.
HE ALSO SAID ‘DADA’ AGAIN TODAY!
Daddy got home about 4pm and we got ready to head out for the annual Christmas gathering that we go to with my parents and their friends. Uncle S, Auntie A, Aunt Shorty and Rob all came this year too though which was a first.
I had a “moment” tonight there. Funny how things creep up on you when you least expect. There was a girl there that had two kids. I can’t remember how old the oldest is but I would guess about 18months. The little boy was a new addition and as I walked by to the kitchen I stopped and asked how old he was. The answer I got “he is 5 months old….he was a preemie though.” So of course I am curious and say “oh really how early?” And then she says “five or six weeks…I can’t remember. He weighed 5lbs 2oz and spent two weeks in the hospital and it was so hard on me. It is all such a blur to me now but I was exhausted. He has to have a surgery too for a hernia.” So I of course am blown away because of the fact that she is going on and on about this when she KNOWS my story. I eventually stepped away and when I saw my mom I started to cry. I went into the bedroom and I was just angry. Now I TOTALLY understand that for ANY mom who has a child early and spends ANY time in the hospital this would be a big deal. But when you are telling this to a mother that you KNOW spent nine months in the hospital with her baby that weighed under two pounds it gets to me. And when you know that her child has severe disabilities…when you know her child is deaf…when you know her child doesn’t eat by mouth. I just don’t get it. Do people not see past themselves?! These people really need to realize just how lucky they are. How their situation might have sucked in the beginning but really in the big picture it is so tiny. Anyways I don’t want to go on and on about it but I know that most of you who read my blog understand this.
Here is my little man holding his bells! (By the way, I would say about three months ago he couldn’t even come close to holding this!) He is funny now too, because when he sees you going to give him something he opens his thumb up…its really cute.
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?
A HUGE happy birthday to Alina and Sophia today! They are now 2 years old and both have made amazing progress since being born at 26 weeks gestation weighing 810 grams and 790 grams respectively.
I can’t wait to see you guys again and big hugs and kisses from A and I!
So Thursday was our BIG day in London with the movement disorder doctors and the neurologist. I had been worried sick about this appointment but at the same time I was eager to find out what his MRI showed from McMaster and then the new one that he had this past May at Toronto Sick Kids.
I had left here at 2pm for the 4pm appointment. Of course there had to be a huge accident so I didn’t get there until 4:20pm. I get into the room and all of the docs come in. They said “well we have some bad news…” and I said “let me guess, you don’t have the MRIs?” Yep. No MRIs to look at. Toronto didn’t do the MRI they were supposed to and McMaster wouldn’t send his one over. Didn’t do it?! A can NEVER have another MRI now because of the magnet in his skull. They better have something! I was so FLIPPIN mad!!!!! I drive all the way there alone with A to find out NOTHING! I don’t understand how all of this bullshit happens with A. Why do we have SO many issues with hospitals and doctors!?! I just don’t understand. So out of the 20 minute appointment that we DID have I was told that A has dystonic cerebral palsy. hahaha are you kidding me?! Thanks for the information that I already knew!
So the last appointment we had with the docs in London they told me that they could guarantee that As would have PVL or something happening with the basil ganglia. I had asked “what if nothing shows up…then what?” And I was told then that A would be a mystery. WELL this time they told me that they would try and get the one that A had done for his implant and if I didn’t hear from them in three months to call them. Three months?! They then went on to say that even if the MRI was fine it didn’t change that he had CP. What about the mystery? Well it doesn’t matter they said. The damage could be in the nerves and cells. Hmmmm sounds strange to me. I am not giving up on my fight and one day I WILL succeed!
After leaving London VERY upset I drove to C-town. Grandma and grandpa were taking A for the weekend so that I could go on my much needed girls weekend near Grand Bend. Tina came to pick me up and we headed out about 8pm.
I had an AWESOME time. It was so great to know that A was being taken care of and that I had NOTHING to worry about for once. It was so strange just doing nothing and hanging out. Sleeping was strange too! It was SO quiet and dark and that is NOT something that I am used to here at home. We all went and spent the day at the beach on Saturday and had great weather. There was eight of us girls and I can’t wait to do it again next year! I wish I had taken more pictures but here is what I have….
Sunday A and I left C-town at 2:30pm and I was home at 4:30pm. I could hardly believe that it only took two hours but we usually stop so it was very quick just doing it straight!
A didn’t sleep the whole ride home and wasn’t very happy either. I had to stop twice because he was vomiting so much that he was choking. NOT a fun ride to do alone that is for sure!
Finally after getting him in the door and changed he went to sleep. That was at about 5pm. He slept until 8:30pm!
After his bath and brushing his teeth he pretty much wanted to go back to bed. Daddy spent a bit of time out on the balcony with him watching the stars and that was it…he was just exhausted. And this morning at 8am….
Okay FIRST I have to wish a huge happy birthday to Cole!!! His birthday was on Monday and he turned 2 years old! He was also at McMaster and was born at 24 weeks weighing 680 grams. He is such an amazing little guy and he has come SO far!Big hugs to you Cole and we will see you soon hopefully!!!
Next I have to wish a happy birthday to my brother, or Uncle S as he is known! He turned 27 yesterday and has been one of my best friends ever. Also a big congratulations to him and Andrea for buying their first house which they will be moving into at the end of this month!
So this past weekend we headed down to C-town to grandma and grandpas for a visit. We didn’t leave until Sunday afternoon but we had a great time. It was a busy house with J’s aunts, uncles and cousins.
A’s cousin Wes being the playful awesome kid he is!
A LOVES lights. Wes had a light stick he was using to entertain A…
Grandma and A hanging out in the crappy weather…oh well at least it was hot on Monday for us!!!
A is one of his favorite places ever…the pool!!!
Awwww what a great family picture!!!
I love this picture of the two of them….
Does he EVER stop smiling?!??!
Grandma and A getting some sun…
Nap time for my little man!
What a cool dude!
Swimming again with grandma…
There were a lot more pictures of A and grandma swimming but he wasn’t wearing a diaper so I can’t post those pics!!!
We ended up getting home late from C-town and didn’t get a very good sleep before having to head to Toronto Sick Kids yesterday. I ended up leaving at 7:45am for the 10am appointment and got there at 9:15am! It is so crazy how sometimes it can take three hours, two hours and then this! I am very happy that it was an uneventful drive as it was the first time that I have had to travel there alone with him.
The appointment went well and A was doing very good at reacting to the sounds that Ruth was playing. Everytime that he would look away from what I was doing to entertain him after a sound she would set off a puppet. The puppet is in a box in the corner of the room and it has lights and sounds. They use it kind of as a reward for turning to the sound. Well my little smarty pants LOVED this puppet and was turning and smiling at it without it even going off! hahaha he just wanted to see it go off and was waiting for it.
Once she was done with doing all of the changes and settings she swept through the probes and made sure that he was okay with it all. He was fine but definitely wondering what was going on.
We got home about 1pm after picking up my glasses and he was exhausted. I found that he was having a hard time going to sleep so I turned off the implant and he zonked right out. After his nap I turned his implant on and boy was he upset. Pouting, real tears and all…
I have to tell you that it is heartbreaking to have him cry like that with tears. It is something that I have not had to deal with for two years and WOW it is crazy! I couldn’t help but giggle to myself as well because it is just so dramatic! He noticed and then he was trying not to laugh. It was too cute.
Daddy got home from work early so we headed over to grandma and grandpas to celebrate Uncle S’s birthday with him and Andrea.
A was having fun with daddy here. If you stomp your feet and walk towards him this is his reaction!
Uncle S getting his one gift from Andrea…a punching bag!
Birthday cake time…
We ended up getting home about 10:30pm and I could barely keep my eyes open I was so tired (and very grumpy!). Thank God that A went right to bed….
I am so amazed at how much A is hearing with his implant. He has always been a big TV fan but I see now how much more he pays attention to it. Especially when there is music playing. This is something I had always dreamed for him! When I found out that he had cerebral palsy my hopes were that music could guide him in life. However we then found out he was deaf and my dreams were crushed. I wondered how on earth he would find his place in the world. Well now with technology and his wonderful cochlear implant my dream is starting to happen! Just look at the concentration this kid has!
Thursday A went and spent the day with grandma at her place. With the heat as crazy as it was I just knew he wouldn’t be happy here. Daddy and I headed to Orangeville for the afternoon so that he could do his final drive test.
Friday I met with a mortgage specialist to see what J and I are able to do. He was very nice and helped me think a lot about what we are able to do and not what we WANT to do. I have to admit that I always find it a bit odd when people ask “what is wrong with him?” (Meaning A of course.) I told him the basic “he was born premature and has cerebral palsy.” Of course not everyone knows what cerebral palsy is and I have to remember this. He then wanted to know why he was wearing glasses and what was on his head, meaning the implant. So I told him. He said to me “oh that is so sad.” Of course many think this but they do not know A. It isn’t sad. A isn’t sad. It is just a different way of life. It angers me when people pity me and feel sorry for A. This is one reason why children LIKE A have such a hard time in this world. People don’t realize that they are just like everyone else except that things have to be done differently.
He then went on to ask about the future. Like, “what about in 20 years from now? Most people have kids and then they grow up and move out….” Well I said “I try not to think of the future but rather live for the day.” Hmmm no response. Now everyone that knows me, knows that I worry A LOT about the future however I have never really thought as far as 20 years!!
The last comment that blew me away was “well you could just have another one.” I took this as having another one would kind of “replace” A. I could never replace A. He has been through so much and has come so far and amazes everyone around him. Of course I would love to have another child but I want to wait until I know that A is more “stable” if that is the right word.
It angers me that he said all these things to me (and you special needs mommies know EXACTLY what I am talking about) but at the same time I have to realize that my life isn’t the normal life. There are so many people in this world that don’t even realize that things like this go on. I mean this guy had to be about 50 and yet he didn’t understand prematurity, cerebral palsy and all the needs that come with it. And if he has never been around it how can I expect him to understand? I can’t. All I can do is try to educate as I go about my days.
Anyhow, yesterday was a great day. A and I went out and did some running around that needed to be done. Then I decided to take him to Chapters to buy him a new book. This kid absolutely LOVES books now and it is so awesome to be able to read to him now and know that he is hearing everything I am saying! I always have read to him but the feeling now is just overwhelming.
I ended up buying him a few books and we have already read them over and over and over. I think I can read most of them now with my eyes closed!
We did some more time in the Pony. Of course with us having carpet it makes it difficult but it is still good for him to stand and put weight onto his legs and hips.
On another exciting note, A is LOVING when you stand him up holding him. He now even moves his legs to walk towards you!!!! He gets SOOOO excited! I have it on video but I don’t know how to put them on here yet. I cannot believe that he KNOWS to move his legs/feet to walk. My little smartie pants!
Yesterday was the annual picnic at McMaster hospital for all of the graduates of the neonatal intensive care unit. We had a great time and got to see all of our preemie friends again! I also was able to meet to different moms that I have met over the Internet who also had a child in the NICU at McMaster. It was great!
Grandma and grandpa came with A and I as daddy was up north fishing with Uncle S. We both miss him and can’t wait to see him! Anyhow here are my pictures from today!
A waiting to get his tattoo with grandma…
A and his tattoo artist 🙂 Notice the leg….
A with the amazing Dr. Shah!!! Actually, it is kind of ironic that two years ago to the day, A was only 13 days old and VERY sick. Dr. Shah had called both J and I to come into the hospital. I will never forget that day. I was just getting ready at the Ronald McDonald House and I got the page. I panicked especially when I was then handed off to the doctor. He told me to come ASAP. I did that. Meanwhile he had called J (who was working in Guelph). My parents had come with him. I think they made it to Hamilton in about 30 minutes…maybe less!
Anyhow, when I walked into the pod where A was I saw a lot of people around his isolette. I started to wash my hands and could feel my heart in my feet. I felt so sick. The tears started before I even reached the corner A was in. Dr. Shah just looked at me and shook his head. More tears. Danielle was on this day too which helped me a lot.
We had a meeting with Dr. Shah that afternoon. I remember how long that walk felt down to the room we were meeting. There was a sign on the door that said “The C’s”, it was awful. They had given A a drug to paralyze him because of some strange jerking and stiffening movements which he said they had never seen before. He told us that he wished that he had answers but he didn’t. Time would only tell what would happen. He also took some spinal fluid to see if anything would show up there.
J and I were also told that we needed to make some choices. We wanted everything done for A. He told us then of the chances of him being blind, deaf, handicapped but none of that mattered to us. We just wanted our little boy saved and alive.
Then, to a year ago today….another meeting with Dr. Shah. A had also stopped peeing and he was concerned about kidney failure. Nothing showed up in the spinal fluid or the blood cultures. They still had no idea what was going on.
Two of the worst days of our lives for sure. But without this wonderful doctor A probably would not be here today! Dr. Shah will always have a special place in our hearts…
A with Hamilton Tigers mascot…he sure didn’t know what to think!!!
A fishing just like daddy and Uncle S!!!
Walking with daddy…
Little Alina and her thumb…
A, grandma and Alina…
A starring at Alina…
A, Sophia and Alina…
Avery and Olivia…
Alina, Steve, Brian, Avery, Olivia and Shannon…
A and Maddox…I met his mom through the Internet and we got to chat a bit in person!!! He is a cutie!
My little man…tired but still giving me some smiles!
Grandpa blowing some bubbles for A…
Cale enjoying the bubbles too…
A with Steve. He was also another great person involved in the beginning, including the two days I just spoke of. So caring and compassionate with his work. I remember him telling me when A was leaving the NICU that he wished I could share some of my devotion and attitude with some of the other parents. It is always comments like this that make you feel good.
A and Cale…
Avery and her grandma doing some colouring…
My little man…smiling away for the camera!
A checking out Avery (with her grandma and mommy)….
A and Cale laughing at Cales daddy playing peek a boo….
My favorite picture!!!
A back at Sophia and Alina’s house…a little more relaxed since losing his shorts! (We all headed over for a nice visit)
Alina enjoying being outside!
Avery by the pool…
Alina and A sitting side by side…A was just babbling away here, it was really sweet…
Olivia and Sophia and Alinas grandpa…
Avery and daddy…
Alina and mommy…I missed the big smiles…
Vickie and A…
Thanks Steve and Vickie for having us over, we really had a great time!!! After leaving there A and I headed over to the hotel with Tina, Derek and Cale.
Looks like these two boys are just like their daddies haha
A in his floating wet suit haha it was way too funny trying to get him into this thing!! It worked AWESOME in the pool though for him!! I have had a really hard time finding him floating devices that work at all. With his low tone in the neck and trunk it makes it hard to hold him. This helped him hold his head up and was no work at all for me!
Cale in his jumper…
A watching tv and STILL smiling away (no nap today either, pretty impressive!)
Cale in bed…I was trying to take a picture and he covered his face with his blanket…
Then the washcloth…
YAY, I finally got the picture!
So it was a LONG day for everyone! A and I didn’t get home until 11pm. And I am happy to report that he had a pretty good night!!!!
This morning I had to get A up and out of bed so that we could drive daddy to work. It was actually kind of funny because it is the first time that I know he was not thrilled about being taken out of bed before he was ready. Upon coming home I laid him on the couch and within minutes he crashed for almost two hours!
When he got up I got us all packed and ready to head to Kitchener to meet Cole! Cole was in the NICU when A was and his parents also stayed at the Ronald McDonald House. Actually kind of a small world because Cole’s dad and I went to high school together. Anyhow Cole was also born at 24 weeks and weighed 675 grams. Here is a profile that his mom Lisa had put on her site about him. Cole Evan
It felt kind of strange seeing Cole and meeting him because I feel like I already know him so well! But that is from following his blog daily and seeing what he is doing. It is so nice that I have met a few moms in the NICU and still keep in touch. They are definitely the ones that I can turn to when I have issues because I know that they understand.
A couple of pictures from last night of A…
Cole…what a sweetheart!
Cole is such a busy boy that I had a hard time getting any pictures of the two of them together. Here are the only two that I caught!
Cole climbing on the chair…is he cute or what?! And that smile!!
A keeping an eye on Cole…
So we had a great visit and I am so happy that we got them together! It took a long time but it is so hard during the months where germs are at their worst.
Lisa has a great site that I read daily. I have a link on the side of my blog for it…she has all the latest for anything and everything you can think of!
Growing Your Baby
After leaving our playdate we went to Fairview Mall for a bit. A loves his new stroller so I figured we could go there for a bit before heading home. We picked up daddy when we got back into Guelph and came home. We got the dogs ready and all of us headed out for a walk because it was so nice out! I am so happy that the days are coming where I can get out more with A. It is so hard being cooped up in the house all of the time!
Daddy and A watching the Leaf game…this has become one of my FAVORITE pics of the two of them!
Today was a great day around here. A didn’t get up until 9am so that was a nice treat for me. He also slept pretty good last night which was also a nice treat. I don’t want to jinx it so I am not going to say too much about it!
He had occupational therapy today but he had just woken up so wasn’t really in the mood to work with her. Deb, his AVT ended up calling to cancel because she didn’t want to drive from Kitchener in the weather so we only ended up with the one appointment.
For some reason lately I have been really tired around dinner time. It was very hard for me to even keep my eyes open tonight. Maybe all of this sleeping in is making me feel like crap. LOL
You know, I also wanted to say how sick and tired I am of people in this world that just have no respect for anyone. I talk to many moms of preemies/special needs kids and it is the same thing for all of us. Why do people think that it is a bad thing to have a child with special needs? My favorite one has to be “punishment”. Are you kidding me?!? A isn’t punishment to me in any way, shape or form. He is perfect in my eyes. There is not one single thing that I would change about him at all. He has taught me so much in life and given to me what I would have never got with a “normal” child. Everything happens for a reason and I could come up with a whole bunch that could explain A being born at 24 weeks. And as everyone knows, having him early wasn’t really a huge shock to me. I knew for weeks before he came that he was going to be early. The night before I had him I read a little booklet on preterm labor!
What I think is “punishment” is the people that think this way having children of their own. I feel so sorry for those kids. They will have to grow up in an environment that isn’t healthy in ANY way. This is why it is so sad to me that some people cannot have children and they would be wonderful parents; loving, kind. Then when you look around in this world there are so many people that just should NOT have kids.
Why do people feel sorry for special needs kids and the parents? There is no reason to feel sorry for them. They are people just like everyone else. When you raise a special needs child the same way you would raise any other child they don’t even know the difference. I remember talking to one mom who has a daughter with athetoid cp. The little girl can’t talk, walk or do anything for herself. Yet her mom said to me “Shannon, she doesn’t even know that she is disabled!” I have to admit that I was a little thrown by this at first but after seeing watching her daughter for a bit I just saw a pretty, happy little girl.
You know, there is a saying that everyone learns growing up. “If you can’t say anything nice then don’t say anything at all.” Some of us still need to learn what this is and take the advice!
Anyways all in all I am just saying that having a child with needs is not a bad thing. And anyone who knows A (actually I don’t even think you need to know him, you just have to look at his pictures) knows how happy he is. He knows that he is loved and I am so lucky to be able to call him my son!
Anyhow I am off to bed. Here is just one adorable picture of my little man and daddy!