NICU Numbers

Mommy with Daniel (L) and Ben (R)



Daniel - 5 days old



Daddy with Ben (on vent) - 3 days old






Another preemie mom posted her NICU numbers on a forum I'm on and I thought it was a great idea. So here's mine (thanks to a journal I kept during that time):

30 weeks gestation
2 short minutes between the birth of Daniel and birth of Benjamin
2 tiny babies arriving way too early
1 amazing husband who gripped my hand just as tightly as I gripped his during those awful minutes before they were taken from me
1 best friend who just happened to be in town for that one night only and was able to be there for the birth of my boys
2 cc’s of breast milk for Daniel for the first few days of life
2 chest tubes for Ben due to 2 Pneumothorax
4 days of not holding Ben while he was on a ventilator
45 minutes of Kangaroo time with Ben when he was 8 days old
13 days old when Daniel wears real clothes for the first time
6 pumping sessions per day
1 positive CF screening test for Ben
4 blood transfusions
1 NEC scare (Ben)
1 terrifying infection (Ben)
1 brady so bad that Daniel had to be resuscitated using the bag
1 day I couldn’t visit due to a cold
1 naïve mom who didn’t pay much attention to the words “possible developmental delays”
9 amazing people who traveled long distances to come and meet these tiny wonders
47 people who felt the need to tell me about their friend/cousin/neighbor/person on a bus who had a child in the NICU 18 years ago and they lived (hooray for them...pardon my sarcasm)
57 very long days spent in the NICU and not at home with Mommy and Daddy
2 little smiles that now greet me every morning
“Too many to count” amazing doctors, nurses and staff that made sure my boys were able to come home to us

Bloggers Anonymous

I can't decide if I want anyone I know in real life ("IRL") to know about this blog. My husband knows but that's it. And I don't think he's even read it. I feel like I'm part of some secret club...

Although I haven't done it yet, there will come a time when someone close to me will piss me off and I'll need somewhere to vent. And if they know about this blog, I won't be able to do it here.

Plus, I tend to be somewhat private about the negative thoughts I have. Those closest to me likely don't realize how many dark moments I have, especially surrounding Ben's CP. But maybe it would be beneficial if they did? However, if I knew that those closest to me IRL were reading this blog, I likely wouldn't discuss those feelings here. I feel like I'm going in circles here.

So, do those closest to you read your blog? Do you find that that makes you "edit" your feelings, thoughts, emotions when you write?

A fun day of allergy testing

Ben has an egg allergy...a very scary egg allergy...as in "rush him to the hospital because it looks like his head might explode" kind of allergy.

We found out about this allergy last fall. Hubby and I were away and my mom decided it would be a good idea for them to try egg (don't even get me started on this one). Well...it turns out it wasn't such a hot idea. Ben severely reacted and was rushed to the hospital. The above picture of him is actually several hours afterwards when he was looking much better!

The boys' pediatrician is also an allergy guy (which I guess is a good thing). After the egg fiasco, he ran a bunch of allergy scratch tests on both of them for various things (eggs, dairy, soy, dust mites, house dust, feathers, cats and dogs). This was in January. It was a horrible experience for all of us. It consisted of a number of "scratches" on their backs while hubby and I held them down. Lots of fun for everyone involved.

The results: Ben is allergic to eggs, house dust, dust mites, feathers and cats and dogs. Daniel had slight reactions to a couple of things but the pedi couldn't conclude that he was really allergic to anything.

Move ahead to their last pedi appointment a few weeks back. It turns out each of the boys latest bloodwork showed that they were allergic to dairy. I was shocked as they love all dairy and from what I could tell had never had a reaction to it. The pedi wanted us to cut out all dairy until he could get us in for more scratch tests. (Note - the previous scratch test showed neither had a dairy allergy). After leaving his office, I decided that I wasn't going to cut out dairy until a positive scratch test would prove the allergy. I really didn't (and don't) believe that they are allergic to dairy. They love milk, yogurt, cheese and butter. And I wasn't ready to cut these things out without any real proof. Plus, Daniel is tiny and I wasn't ready to cut out all those calories from his diet.

So fast forward to today. Another fun afternoon of scratch tests. This time I had to provide the whole milk for the test...which is apparently better to use than whatever he used last time. Ben started screaming before he even touched him (which is totally not like Ben who usually charms everyone). After an hour and forty-five minutes of torture, the pedi has now concluded that it's not likely that they have an allergy to dairy.

Thank freaking God is all I can say.

New Tricycles!

I was complaining to one of Ben's PTs the other day about how hard it is to do things outside with Ben. It doesn't seem fair to just put him in a stroller while Daniel is having fun walking and exploring. As luck would have it, she had just seen a tricycle that another family had purchased for their child and thought it'd be perfect for Ben too. So I checked it out and ended up buying two, one for each of them. They have a harness and a hoop to help hold them on as well as a handle for pushing. We went out this morning to try them out and they were AWESOME! The boys just loved them and we had a great time.

A must-read poem from "I Heart Milo"

Jamie at "I Heart Milo" posted an amazing poem on her blog this morning that I just had to share. Enjoy it.

All about Daniel

I don't want this blog to be ALL about Ben and CP. I want at least some of it to be about the rest of our world. So let me think about what to tell you about Daniel.

Daniel is Twin A...so my first born. I'm not sure that matters. Everyone seems to want to know who's the oldest. Yes, Daniel came out a whole 2 minutes before Ben, but does that really make him "older" than Ben? I don't think so.

Daniel was the healthier of my 2 preemies. That said, he was released on the same day as Ben. He had tons of A's and B's...especially B's. He never got really sick but was super, super slow getting well enough to go home. We think he was waiting for Ben.

For some reason, we don't call Daniel anything but Daniel. Not Dan. Not Danny. He is very rarely called Dan the Man. Benjamin has many nicknames. We call him Ben mostly. He also gets Benny, Mr. Ben and for some reason Benny-Ha-Ha. I don't know where that one came from.

Daniel is very much a mommy's boy. That mostly stems from his reflux days. Daniel had very severe reflux. He was discharged from the NICU with reflux and was on Zantac for it. We continued to up his dosage as he put on weight (and consequently the symptoms would return). When he was 5 months old (3 months corrected) the Zantac stopped working for him. He was put on Prevacid and that helped a little. We thickened my breast milk....which did nothing. We switched to Alimentum which also helped a little. He was impossible to feed and threw up almost everything that we did manage to get into him (this continued for about 4 months). Because he was so difficult to feed, I became the only one who was able to do it. So I ALWAYS fed him. Consequently, he got very attached to mommy.

Daniel is also quite tiny (we also contribute this to the reflux). He is just 21 lbs. In Canada, he needs to reach 22 lbs before I can turn his carseat around. Ben reached 21 lbs. months and months ago but his carseat remains rear-facing since I want to turn them around together.

Daniel loves books, especially Goodnight Moon and Goodnight Gorilla. If Daniel had his way, an adult would carry him around constantly and go wherever Daniel "points" to. Daniel loves cars and loves to watch them drive by the front window. Unfortunately for Daniel we live on a court so there are not many cars that go by each day. Daniel loves to kiss Ben. Daniel also loves bananas. We have a few books that have a picture of a banana in them. When he sees the picture of the banana, he starts nodding and pointing to the cupboard where we keep the bananas. He won't stop until we feed him a banana.

When I'm feeling blue about Ben, I also feel blue about Daniel. I feel bad that Daniel doesn't have a typically developing twin brother. I hate that Daniel won't have a brother to play sports with and to climb trees with. Sometimes I cry for what CP has taken from Daniel too.

All about Ben

I wasn't sure what I wanted to write about tonight. But I think it's time to tell you more about Ben's diagnosis. Ben has Spastic Diplegia Cerebral Palsy. He was diagnosed by a Pediatric Neurologist in September 2008...just a week after his first birthday. We really had no idea. We knew he had developmental delays but we really had no idea that it was any more than that. So, let me try to explain what this diagnosis means.

Cerebral Palsy ("CP") in the most basic terms means that there has been an injury to the brain (cerebral) that has caused the person to not be able to use their muscles in the normal way (palsy). CP is not progressive. It is not communicable. It is not curable. It is (somewhat) treatable.

There are 3 main types of CP:

1. Spastic

2. Athetoid

3. Ataxic

A person can also have a mix of these 3 types.

Spastic CP is the most common type (about 80% of CP cases are spastic). It basically means that the person has one or more tight muscles groups that limit their movements.

Diplegia is a type of CP that affects mostly the legs, but can affect the trunk and arms to a lesser extent.

Ben's case is on the milder side of the spectrum. There is a classification system that classifies children affected by CP based on their gross motor skills (sitting, walking, and wheeled-mobility). You can see it here. Currently, both of Ben's PTs consider Ben to be a Level 2. This would indicate that Ben will someday be able to walk indoors unaided and walk outdoors with the use of a walker. This however is some time away but hopefully before he starts school.

Some more specifics about Ben:

1. We're not sure if the CP has affected his speech. He is somewhat delayed but not enough to cause any real concern at this point. He babbles constantly and can say some words (about 4) in the right context.
2. We don't think that the CP has affected his cognitive abilities. I am not sure but have heard that this will be assessed when he's around 3 years of age. Currently, his PT's think he's very bright.
3. His fine motor skills are really great at this stage. He saw an OT once a week for about 6 months. We only see her once a month now.
4. The spasticity in his legs seems to mostly affect his hamstrings and calves. His adductors are not as affected (the muscles on the inside of the thighs). Usually with Spastic Diplegia the adductors are affected which causes scissoring of the legs when walking or crawling. Ben had a bit of tightness in his adductors during a recent growth spurt but lately that tightness has lessened.

When Ben was diagnosed in September (7 months ago), he could roll from his tummy to back and back to tummy. He could roll both left and right. He was not comfortable hanging out on his tummy. He could not crawl in any form. He could not sit unassisted. He could not pull up. Just 7 months later, Ben can sit unassisted (although he still has some balance problems so we don't leave him unattended when sitting). He can army-crawl. He can get up on all fours. He can pull to a kneel. He can hang out on his knees. He loves to be on his tummy. He can use a walker with help. He can go up and down the 2 steps into our family room. HE IS AWESOME! What progress he has made! He is a very hard worker and gets such pleasure out of doing things himself! He amazes me every single day.

WordFUL Wednesday

Sorry. I'm breaking the rules. I already declared it Wordless Wednesday and here I am writing a post. But I have good reason. After just posting 2 days ago about Ben "losing" words and starting Speech Therapy, he decided today that he'd like to talk. He said "tractor", "Uh-oh", and "car" many, many times today. He just kept saying them over and over (mostly in context). It was amazing!

In related news, Ben has also decided that he now likes apples, cheese and raisins. Last week, he wouldn't touch any of these items with a 10-foot pole, but now he can't get enough of them.

Life is good.

Wordless Wednesday: Just a Swingin'

Daniel



Benjamin

Poor me

This morning the boys were playing in our living room (which by the way has no furniture...just some of their toys). Daniel was walking around with some toy and Ben was army-crawling / rolling around as usual. I was sitting on the step with my morning coffee observing. I started wishing that Ben could walk around like Daniel and thought about how cute they would be both toddling around at this age. Then the tears started. And this time the tears weren't for Ben. They were for me. It wasn't the typical teary moment that I normally have where I mourn for Ben. I was mourning for me. I was sad that I won't ever get to see my 19-month old twins toddling around together. Yes, someday Ben will likely walk. But I will never see my boys learning to walk together.

Always something to worry about

Lately I've been worried about Ben's speech. We've known for awhile that both Ben and Daniel are somewhat delayed in their speech but really weren't too concerned. They've been delayed in everything else so why not speech too?

That said, Ben is starting to concern me. About 6 weeks ago, they were both actively repeating words and each had 3 or 4 words. Daniel now has about 6 and uses 3 all the time without any prompting. Ben however has pretty much stopped repeating and rarely uses any words. He does babble constantly though.

At first I didn't really notice that he was using his words as much. That's how it is with twins sometimes. Daniel was using them so I didn't realize that Ben wasn't.

So I took Ben into see the Speech Pathologist that he's seen in the past. I don't think she's overly concerned but does want to see him weekly. Ben has been making huge improvements in his gross motor skills lately so likely that explains some of his speech "regression".

But some good news...we went out for a walk this afternoon. And Ben said "car" about 5 times without prompting. Yippee! Daniel points out just about every car that drives by and finally Ben picked up on it. It's so great to have Daniel to motivate Ben....one of the perks of having twins.

Random thoughts

I'm home alone. For just the 2nd time in 19 months. Well, technically 17 months since the boys spent the first 2 months of their lives in the NICU...but that doesn't really count in my book. How can it count when every minute that you're at home you're feeling guilty that you're not sitting by their isolettes praying that they're going to be OK?

So back to the good news...I'M HOME ALONE! Hubby's at work (he's a tax accountant so needless to say very busy this time of year). And the boys are out with our nanny. I probably should tell you more about the nanny. Yes, I have a nanny and yes, I stay at home. She's amazing and is really a part of our family. She doesn't live in. She's here 5 days a week from about 9am til 5pm. It's great for us. It means I can take the boys to playgroups, swimming lessons, kindermusik, My-Gym (or whatever else I want) and have an extra set of hands. It means I can take Ben to his many appointments and leave Daniel at home with the nanny. It means I can go to the grocery store by myself. It means I can make supper most nights. It means I'm a better mom to my kids. And yes, it sometimes even means that I can take a nap or go for a pedicure.

So back to being home alone. Our nanny rarely works weekends (in fact I don't think she ever has). But her dog needed surgery and she was looking for some extra money. We've been super busy lately due mainly to tax season and our upcoming kitchen renovation. So I asked her is she wanted to work a few Saturdays. So she's taken them off to the Sugar Woods to see how good ole' Canadian Maple Syrup is made...hope she brings me some back...

I've been having some interesting thoughts today (maybe I have interesting thoughts other days but I usually can't hear myself think.) Like...

What on earth did we do to keep ourselves busy before we had kids? I've been alone now for just over 2 hours. I don't know what to do with myself. I've been trying to remember what hubby and I did on the weekends before the twins showed up. I know we slept alot more. But other than that, I really can't figure it out.

Sometimes being lazy pays off. The Boy Scouts were by this morning collecting bottles for their annual bottle drive. I gave them 6 moving boxes full of bottles. We've been meaning to take the bottles to the recycling centre for ages but hadn't gotten around to it. Oh, and not only are we lazy but we drink way too much Diet Pepsi.

There are some really great blogs out there. I've been surfing around and have come across the most amazing women. This one gave me some perspective and made me cry. This one made me laugh out loud. I also like this one and this one and this one.

And the one thought that just won't go away....I miss my kids. It's lonely at home without them. They make home fun and cute and loud and crazy.

Counteracting the jealousy

So. I've been thinking about my "Jealousy" post from a few days ago. While it is true that I am jealous of all those things and many others, I am truly grateful to be Ben's mommy.

Someone once asked me if I thought life was unfair. And no, I don't. We are truly the lucky ones who get to "have" Ben. He is a very special boy and we are blessed to have him in our family. I try to think that this is how Ben IS. I try not to think about how Ben SHOULD be. He is who he is and he is awesome for it.

Most of you have probably already read the "Welcome to Holland" poem. But I want to reference it here for those who haven't. It helps when those feelings of jealousy, envy, pity, etc. try to take over.

Moving towards walking

At his last PT session, Ben got to try "walking" on his own for the first time. He absolutely loved it and did amazing. His PT thought he did fantastic and I just had to catch it on video. It won't be long before he's ready for his first walker. Check it out!

Jealousy

I really need to get this jealousy thing under control. Here are some recent examples:

I'm jealous of my neighbour who has 6 year old twin boys that she WALKS to school every morning.

I'm jealous of all the other twin moms in my local multiples group who gave birth to their twins much later than I did and consequently have "normal" twins who run and jump.

I'm jealous of people who don't know what CP is.

I'm jealous of the mommy I met last weekend who was taking her 2 year old out for a walk without a stroller.

I could go on and on.

I try to keep this jealousy thing in check mainly by convincing myself that we all have "our lot in life" and mine just happens to be that my son has CP.

I try to tell myself that it could be much, much worse. And most of the time that works...most of the time.

No news is good news

Ben had a follow-up appointment today with the Neurologist who originally diagnosed his CP. We haven't seen him since that day just over 6 months ago now.

The appointment went well. He examined Ben, got him to play with some toys and asked us tons of questions about his development. He was quite pleased with his progress and told us that Ben's legs (hamstrings, calves, etc.) should not get any tighter now. He said that the tightness maxes out at about 18 months. I faintly remember hearing that before, but I had totally forgotten. To me, that was very good news.

He doesn't see any surgeries in Ben's near future. But he said we would revisit that topic in 6 months when he sees Ben again. He thought that eventually Ben may need heel-cord lengthening surgery and maybe even Dorsal Rhizotomy. But it was simply to early to tell.

So, all in all, it was a good appointment. No big news...which these days, I take as a good thing.

The boys

Well. Now that you know lots about me, it's time to tell you about my boys.

My sweet, sweet boys are now almost 19 months old. Daniel and Benjamin were born on September 19th, 2007 at just 30 weeks and 2 days gestation. I had no complications with my pregnancy until 29 weeks when I started feeling some tightness and told my ob-gyn. Anyways, it turns out I was starting to dialate. A week later, I was dialated even more (even though I was not contracting). Both boys were breech and apparently they could feel Daniel's feet. They were very worried about cord compression and it was decided that an emergency c-section was in order.

So, within the hour, they had arrived. I was terrified. They were too young...just 30 weeks. They weighed 3 lbs 4 oz and 3 lbs 7 oz. They were of course taken right to the NICU after just a few pics with me.

They stayed in the NICU for 8 weeks and 1 day and came home together on November 15th, 2007. They both had rough hospital stays, but Ben definitely had the harder time. 24 hours after birth he was put on a ventilator. He was on it for 4 days. He spent the next 4 weeks going between CPAP and nasal canula. He got an infection. He required many blood transfusions. But finally, he got stronger and did better and got to come home.

Daniel fared better but still had a long haul. Although he never had anything really serious happen, he just took a long time to get over his A's & B's and take all his feeds on his own. Maybe he was just waiting for his brother to be ready to go home too.

When they came home healthy, I really thought we were in the clear. The only worry I had related to their "preemieness" was RSV. They only left the house to go to the pediatrician. We were living in NY then and didn't have any family or friends nearby. This turned out to be a blessing since no one came to visit and therefore didn't bring their germs with them. The boys didn't get sick the whole winter.

By March, I knew that Ben was developmentally delayed. But there was nothing I could do about it yet. We were moving home in May and I already knew that it took upwards of 6 weeks to get a PT to start seeing him.

Ben finally saw a PT in July. She came to the house and agreed that he was very delayed. At that point he was 9 months old (7 months corrected). Her assessment put him at about a 3 month level developmentally. Unfortunately she was going on holiday for 6 weeks and was only able to give us some tips on what to do. In August, Ben finally got in to see the PT at our local hospital on a weekly basis.

At this point, I still didn't have any idea that Ben had CP. Well, I should say my head had no idea. My gut knew something was up. All last summer, I was a wreck. I would say that I was depressed. I was overwhelmed. All I wanted to do was sleep.

The week after their 1st birthday, we went to a children's hospital a few hours away for the boys to have EEG's. Daniel had had a "shaky episode" and their pediatrician wanted both boys to have EEG's to rule out epilepsy. After their EEG's, we met with the neurologist. He told us that Daniel was fine and was likely having "shudder attacks". These are common in young children and usually go away within the first 2 years. Then he talked to us about Ben. He told us that Ben has spastic diplegia cerebral palsy. He told us that he didn't know if Ben would walk, run or play sports. He told us that Ben was obviously very intelligent and that the CP didn't affect his cognitive abilities. He told us that Ben was lucky to have a twin brother and that Daniel was lucky to have Ben. We just sat there. I don't think we asked even one question.

Then we drove home. We hardly talked on the way home. I'm pretty sure I cried. The whole drive home I was just itching to get on my laptop and start googling.

It's now 6 months since "diagnosis day". Ben is making great progress. He can sit up quite well, army-crawls everywhere, and can pull up to kneel (he's close to pulling up to stand). His fine motor skills are great and his OT now sees him just once a month. Just last week, he started training for his first walker. He did absolutely amazing and walked everywhere he could. His PT was thrilled with how well he did.

I am doing OK. Most days are good. Some days are hard. Some moments are really hard. Luckily, I have Daniel too so I have to face Ben's delays everyday and I can't be naive about how delayed he is. This makes it much easier to go to playdates and see other kids doing "normal" things. But sometimes, no matter how prepared I think I am, it catches me. I see Ben laying on the floor playing (because he can't get into sitting on his own) and all the other kids walking and running around him and it just gets to me.

But Ben is so much more than his diagnosis. He loves to be chased and tickled. He's a picky eater (he likes red pepper but not apples?). He has the most gorgeous eyes and the most wonderful smile in the whole world. He loves his daddy more than anything (even more than mommy). He loves Tupperware. He doesn't really like it when Daniel kisses him. But he loves to kiss Elmo. He is so determined and so hard working that it amazes me everyday.

And Daniel. He's small but a bully. He loves to take Ben's toys. But loves to kiss him too. He prefers mommy to daddy but would probably rather just have his blankie. His favourite word is "cracker". He loves to look out the window at the cars. He'll eat just about anything as long as you're eating it too. He has the bluest eyes.

So that's it. Those are my kids. I hope you enjoyed getting to know them.

Me

Well. I guess I should start with me. Normally I'd start with my boys, but I want this blog to be about me too. Is that selfish?

I'm 34 (how did that happen?). I live in a small city in Canada about 20 minutes away from the very small town where I grew up (and where my parents still live). I am (mostly) happily married to my husband of 2 1/2 years. I have fraternal twin boys, aged 19 months.

Here are some random things about me:

1. My absolute favourite thing to do is sleep. I would nap every day if I could.

2. I admit it…I now drink instant coffee.

3. I make the best spaghetti sauce on the planet.

4. I have an amazing husband who gets up with the boys every morning at 6am and lets me sleep til 7:30…oh and even has my coffee ready for me when I get downstairs.

5. There is nothing that compares to a glass of good red wine.

6. I am on a diet. To date, I've lost 17 lbs. by doing Weight Watchers. I'd like to lose another 20 lbs. or so.

7. I can't watch CSI when home alone.

8. I have a ridiculous phobia of bugs.

9. I lived in Bermuda for 6 years, 3 of which were the best years of my life so far.

10. My French is good enough to survive in Paris.

11. Salt & Vinegar chips are my absolute favourite snack…always have been…always will be.

12. I love country music.

13. I hate exercise.

14. My last thought every single night is about Ben and his progress (or lack of), his therapies, his future, etc.

15. I spend way too much time on Facebook.

16. In my prior life (i.e. before kids), I was a Chartered Accountant (U.S. equivalent of a CPA).

17. I really don't have any hobbies.

18. I'm way too competitive.

19. I'm a horrible dancer and feel quite self-conscious about it. Red wine and/or vodka help.

20. I stole most of these from my Facebook Note "25 Random Things About Me".

Am I really doing this?

I'm not sure if I'm really going to do this. It's so not me...blogging. (Oh...should warn you, I use "..." way too much...it really borders on annoying. I'll try to stop. I promise.)

I am completely addicted to reading other people's blogs though. And I do feel that I have something to contribute. Reading blogs by other Mom's dealing with their kids disabilities has been such a lifesaver for me. Maybe I can help someone else. Maybe.

And, I am horrible at keeping track of all the wonderful and amazing things my kids are doing everyday. So this will hopefully help me do that.

So here I am. I'm blogging. Maybe I am doing this.