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.