So it sure doesn’t feel like we are only 39 days away from Christmas. The weather this weekend was just gorgeous which was nice so that I could have A outside in his walker! I decided on Saturday to be brave and try to walk to the corner store. It is about a five minute walk normally, however it took A and I just over an hour to get there and back. Talk about a lot of work for him! It was really cute when we got to the corner because he KNEW where we were going and got SO excited. He was jumping and babbling away.
On the way back he was pretty much complaining the whole time. He knew that we were headed home and this is NOT where he wants to come when we are outside. I swear, this kid could live outside!
When we got inside he was SO soaking wet from all his hard work that he had to have a bath. I told him how proud I was of him and that it was a lot of hard work for him. He still wasn’t impressed to be inside.
On another note, I get a lot of people asking me why A goes to bed so late. He is usually in bed between 11:30pm and midnight. Sometimes a little after midnight. I have never really cared as J and I are both night people and I don’t see the point in putting a kid to bed when they aren’t tired.
Anyways, Friday was a long day for A. He was up early and then had all that excercise that is new to him. J and I had gone out for a bit Friday night and at one stop at a friend of his, we were out of the vehicle for about fifteen minutes. I looked in and guess who is sleeping? Yep, Mr.A. I couldn’t believe it. It was only 8pm and he NEVER falls asleep in the vehicle, let alone that early! As soon as we got back in to drive home he was awake. J did his breathing treatment at about 9:30pm and A fell asleep during that. Now there are a handful of times that this has happened during his treatment, however it is never at 9:30pm.
After his treatment was done, I changed his diaper, got him in his pajamas and took him up to bed. All of this without waking up. Very strange! So of course with J and I being night people, we didn’t go to bed until about midnight as usual.
Guess what time this little monkey was up?! 5am! YIKES. I left him in bed until 6am when he really started to complain. It was still dark out and I just couldn’t believe he was ready to go for the day. I brought him into my bed as daddy was leaving for work and just wanted another hours of sleep. A never comes to our bed so he thought it was just great. He was babbling away. Every time I opened my eyes he would laugh and get excited.
About 7:30am his feed was done so I got up and went to clean out the bag and when I went back up to get him, this is what I found.
I didn’t even bother going back to bed because when I normally do, he is up shortly after. Well he decided he wasn’t going to get up until 1pm!!! So, needless to say, this child will NEVER go to bed EVER again before 10pm! haha
Yesterday we had another great day. A was in a SUPER mood which was really nice for both J and I. We were going to take him to the parade but by the time we really were ready for the day it was too late so we decided instead to just have a family day. We put up our Christmas tree, however today is the day that A and I will decorate it. He just LOVES his Christmas tree. He was babbling away as I pulled it out of the box and was putting it together.
Last night we headed over to grandma and grandpa Cs house for dinner. Auntie A and Uncle S came too so that was nice. The last time we saw them they were still in Toronto General.
I took A’s walker over there so grandma and I took him for a little walk. He was having a hard time yesterday, but I think its because the road is bumpy so he can’t get that push. I KNOW in my heart that this is something that he will definitely get the hang of. I got word however that Kidwalk is redesigning their walker and the new one will be out in the beginning of 2010 so we will probably wait to see what they change about it. We will also be trying another walker next, but I don’t know how it will work as it doesn’t have as much support as this one. We will see, I never say never with A! He has proven so many people wrong in the past four years of his life, even me so I know that he is going to keep on surprising us with what he is able to do in life!
Keep up all the great work A, mommy is SOOOO proud of you!
Well A did good overnight considering his tube was hanging in there by a thread. He was up at about 7:30am and Joyce left at 8am. He ended up going back to sleep at about 8:30am until just after 10am. I had talked to his GI doctor this morning and she told me that she would call me when she got into work and let me know what time to bring A in to have his tube changed. So around 9am she calls and tells me that she talked to radiology and they said that it could be today or tomorrow that they would do it. She said she stressed how important it is for him because that is his only means of feeding and that it should be done today.
Anyhow I was a little frustrated when getting off of the phone with her. I just cannot believe how the hospital doesn’t see putting a tube in to be an emergency. Well to my surprise they called and after a bit of a fuss they said to have him there for 12pm sharp. So I pack A up and head out to Mac. I am there about 11:45 so as not to be late and guess what time they call us in?!? 1:15pm!! Does that seem like 12pm sharp? Nope doesn’t to me either!
So finally we get into the room and the doctor decides that he is going to put a size 8.5 tube in and A has always had a 5. So almost double. After discussing it with him a little bit I agree to do it. So in goes the new tube. I can tell by the way he is talking to the nurse and looking at the screen that something isn’t right. So I lean over and peek. After seeing this done plenty of times I can tell exactly what I am looking at. I say that there looks to be some of the dye going into the stomach and that A can’t have anything in his stomach. And besides if the tube is turned up to face the stomach it is kind of pointless anyways. So after a bit of manipulating of the tube he says it is fine. Clean up and off we go.
I go upstairs to see his GI doctor who is absolutely wonderful by the way! I thought that A’s tube was infected so she wanted to peak at it, but said that it was okay. So after talking to her a bit about things A and I headed up to the NICU. And yay to our surprise Danielle was on! I got two pictures of her and Julie with A. Julie was A’s OT in the NICU and did great with him.
So after some visiting there I went to see A’s favorite neonatologist but he wasn’t in his office so I just left to go and start A’s feed up. After doing my normal routine with the feed bag and pump I start it up. And I hear this huge POP and see that the feeding tube has come right out of his extension tube. To make things worse formula is coming out of it like crazy! So I clamp his extension and then checked it again. Opened it up and more formula starts coming out along with bile. I freaked!
So back upstairs I go to GI. They send me to radiology AGAIN!! Ahhh by this point it is 4pm! I am sitting in the waiting area with A and hear a nurse say “oh here they are” and I looked up. And to my shock it was the same nurse as a time before when A had his tube changed. She was an absolute ***** last time to me (my dad can vouch this) and made me feel like crap! Right away she is questioning me and telling me that I am not doing this/that right! I told her after about one minute of her rambling that I didn’t want to deal with her so she could send someone else. The other nurse was wonderful.
Back into the radiology room we go. And in walks the ***** with the doctor. He checks the tube and says that it is fine. Then of course she starts telling me that I need to get someone to show me how to use the pump and blah blah blah. Give me a break!!! A has been on the feeding pump since coming home, I think I know how to use it! So then she wants me to start the feed so they can see what happens. So I connect it and start it. She comes over, points to his pump and says, “you aren’t even running it, it’s on hold!” Duh!!! It said hold because IT WAS running and if you WANT to hold it THEN you push it! So basically, it just proved to me that this was yet ANOTHER thing she didn’t know a thing about. If you don’t know something then don’t pretend you do! I thought I was going to cry, and it really wasn’t fair that she was treating me like a bag of **** when I do everything I can for this child.
ANYWAYS!!!!!!! Enough of that. I went to grandma and grandpas after the appointment and we ordered pizza. I picked up daddy and then we ate dinner and came home. Joyce is here again tonight. I am starting to get a cold yet again. So off to bed I go…
Just a few pictures of A tonight at grandma and grandpa’s. He loves this little toy and you can see him really trying. And yes he is holding it!!!
Well today went good. A had a pretty good night and was up just before 8am. Grandma was here for 10am and daddy went out to his friends for the day. I stayed home and relaxed, caught up on some emails and read my new book.
After grandma left this afternoon A and I had some playtime but then he decided he would rather sleep.
Daddy came home about 6pm and I got ready to go out for a bit. I was gone for about two hours and when I got home I get greeted at the door by J in a panic because A had pulled on his tube and the balloon was out! AHHHH! I swear things around here are never dull. I hope now J will listen when I tell him how quick A moves and that he needs his tube covered at ALL TIMES!
So after looking at it (he didn’t pull it right out like he usually does) I turned on the feed and it isn’t leaking. So I have decided to run the feed over night and then take him in the morning to get it changed. Joyce is here tonight so that is good, I don’t need to worry about him getting worse.
I am kind of upset because I had to cancel his appointment with his physiotherapist tomorrow and she was going to be bringing the standing frame that I have been waiting for. And I have to cancel his appointment for his RSV shot. Go figure. I just hope that things move along quickly at the hospital because I can’t stand that place.
Well here are some pictures of A today with his best buddy Cujo and then at the bottom are two pictures of A looking at the bunny from grandma and grandpa. He absolutely loves the thing and looks at it out of the corner of his eye and smiles.
Well today I woke up with a sore throat and just not feeling the greatest. However as the day went by I was able to cope and feel a bit better. Daddy went out for a bit and A had a nap. By the time daddy got back we got ready and headed over to grandma and grandpas for the Superbowl party that they were hosting. Neither J or I like football but we did have a good time. J actually won two rounds of the the betting that we had going on.
About an hour before leaving my ear started to bother me, and by the time we got home I was in tears and nothing I am doing is making it feel better. J put some drops in it for me and then I took some advil and now I am going to be heading to bed.
So lots of pictures.
These last three are of A holding onto a little wind up snowman that he loves. It is one of the few things that he will hold consistently. The second picture you can really see him trying to get it to his mouth!
One year ago today A returned to Mac. He was having ALTEs (apparent life threatening events) that we were told in NICU not to worry about. He didn’t have any for the month of January until the day after we got him home, go figure. However Jeff and I were so used to seeing him do this that we didn’t think much of it although it was VERY scary to watch! (It wasn’t until later on that we really found out what they were called and how serious they were.) So he was on the peds floor, and going from the NICU to peds is like night and day. It was very hard on me but I sure wasn’t expecting the whole thing to turn into what it did.
During these spells his heart rate would be between 20-40 and his oxygen saturation’s would be around 20. There would be no chest movement and he really looked like he was lifeless. Now anyone who knows what these mean knows how scary this would be! Yet when A would finally start to breathe you would never know by his behaviour or anything else that something like that had just occurred. And to look back and think of them telling me in the NICU that it wasn’t a bad thing and just to wait and A would come out of them. It wasn’t until later on that I learned that every time that he had one of these spells there was a chance that he would NOT come out of it! More of this story to continue later….
Well not much to say for today! It was actually a nice, quiet relaxing day for me. I got up with A at 9am (bonus!) and we did a little bit of his physio. I then put on one of his Einstein DVDs so I could clean up a little around here. After daddy got up I went out for a little bit and when I got home he went to the Storm game with a friend of his.
Grandma and grandpa came over after the game for dinner. We had spaghetti (yes again, I had tons of sauce left over!) A was really good today and should sleep pretty well tonight considering that he only had one nap today from about noon until 2pm.
I don’t even have any pictures for today! Tonight we watched the videos that I took of A and Alina. Wow I could just watch them over and over again! Those two kids together are just amazing!
Well I am off to bed…
Today A was up pretty early considering he only went to bed about midnight. He was up at 7:30am and hasn’t really slept all day so hopefully he will sleep great tonight!
A and I went to the Guelph Storm hockey game with grandma and grandpa. I haven’t been to one in a long time and thought that it would be fun. I don’t normally like to take A to places that are full of people with lots of germs but he was kept well away from anyone really. He slept on grandma’s lap for a while but other than that he was really good. The Storm lost in a shoot out which always sucks. Considering that they were down 5-1 in the third they did really well.
One picture of A and grandma at the game. I realized when I got home and put the pictures on my computer that I still had the night vision on so the picture isn’t the greatest.
I’m really excited about tomorrow because A and I are finally going to meet Vickie and her twin daughters (who were also in Mac) Sophia and Alina. Don’t worry there will be lots of pictures tomorrow! Here is a link to their profile on a site that I check out every single day! Sophia & Alina
Just a few from bath time tonight…
I can hardly believe it that A is 19 months old today! I look back and wonder where the time has gone. I remember the day he was born like it was yesterday. The hospital stay felt never ending and he sure gave us some good scares. But in the end he has come through it all and time has just flown by! It is even harder to believe that in just five months he is going to be 2 years old!
Grandma came over this morning and daddy and I went and did some stuff that we had needed to do. I had some stuff to return to the mall and had a ton of bills to pay. We got a new fish for our tank too. A loves watching the fish all the time. The first thing he looks for in the morning is the TV and if that isn’t on then he is looking at the fish. It is kinda cute.
A is pretty much himself today. He had a poop that was actually not even loose at all. So I guess his tummy is getting back to normal. Joyce was supposed to come tonight but she is still sick so she won’t be coming until next week. (Joyce, I hope you are feeling better soon!)
Yesterday I forgot to write my cute story about A. I had him in his swing and had put on one of his Baby Einstein DVDs. So I am in my room cleaning up a bit and then walk out down the hall and notice that A was smiling like crazy at the TV. So I come around the other side so he doesn’t see me and rewind it a little. And to my surprise it was a baby in the bath on the TV that he was smiling at. And I mean a FULL smile, almost laughing. I was so excited that he knew it was another baby! So I got out my video camera and then played it back a few more times and sure enough he smiles at the baby again! It was so cute! I was almost in tears because of the fact that I knew that he understood what he was seeing. It is the little things like this that make me stronger. And it is the simple things that so many parents don’t even think of. It is something that is expected to happen as a child grows so they don’t think much of it. Whereas to a mom of a preemie these things are amazing!
It is often a topic of discussion with other preemie moms that I talk to. And I really don’t think that a lot of people think the way that we do when their children do things. I mean I am sure that they are happy but when it is something so simple I don’t even think they think of it. A holds a toy for two seconds and I am excited. He sits in his bumbo chair and holds his head up for ten seconds and I am excited. When he gets his fingers to his mouth I am excited. I could go on and on.
Anyways tonight we went over to grandma and grandpas for dinner. Then J and I went and did our grocery shopping before picking A back up and coming home.