Surgery Was A Success!!!!

Just spoke with the surgeon and everything went smoothly! Thank you Lord!!! He said there was very trivial leaking of the mitral valve which should not be an issue and everything was very straight forward. They are taking the breathing tube out now and we should be able to see him in about 30 minutes or so! Thank you so much for praying but keep praying that Bennett remains strong and recovers well and quickly. I'll be back with more updates!

14 Hours To Go And This Is What I'm Looking Forward To...

...My little boy's smile each and every day after this is all over. Please ignore my cheesy baby voice, I think I was just so excited he actually smiled while I was taping him. I've been trying for a while because he does it when I don't tape him but won't when I do so finally! And it's a good one! I love you so much Bennett!!

Well we're here in Philadelphia. The preop appointment went well. They did tell us that there was a chance they were going to have to reschedule the surgery due to many women going into labor with babies that would need immediate heart surgery and needed the specific surgeon we requested (told you he was the best, everyone wants him!) However, they came back in with good news and said we were still on for tomorrow morning. 6:00 am is check in and the surgery should take about 4 hours (that's with anesthesia, surgery and waking up from it) So once we turn him over to the operating room we should be able to see him 4 hours from that point. I tear up just thinking about giving him over but I know it's going to be okay.

We are specifically praying for a smooth operation with no surprises, no complications and quick healing and recovery for Bennett. And of course for God to guide the surgeons hands and to fix Bennett's heart perfectly. We hope you'll join us in these prayer requests. We want to thank everyone for being so supportive during this time and we appreciate all the prayers our family has received.

I will try to update the blog through out the day tomorrow as we get updates during his surgery. Thanks again for all your prayers!!

My Baby Can Read!

*Mute the music at the bottom*

Okay, she's not a baby, she's 4 and maybe it's superb memorization but hey, reading is a little memorization isn't it? I wanted something for the girls to watch and work on while I fed Bennett other than Dora all the time and I contemplated for weeks on which program to get. I wanted something for my typical kids as well as for my child with special needs so finally I just decided on "Your Baby Can Read" hoping that it's not too fast paced for Bennett when the time comes.

So I've had the program for about 2 weeks now and we definitely don't do it as much as the program suggests but Ainsley is very interested in learning to read so she's picked it up very quickly. Harper is not as interested but she's learned to recognize a couple of words. Now, I realize I could make up my own flash cards but I just don't have the time to cut out zebras and gorillas people. Plus you get CDs, books and flash cards with and without pictures so it's a ton more than I could ever make. Anyways, I taped Ainsley "reading" the starter book and I tried to skip pages and use flash cards as well to try and trick her but she's really getting the hang of it. Not saying I've got this genius or anything, I mean, sure I think she's smart but all parents think that of their own kids, I just think it's a pretty good program if your child shows interest. Sorry for the poor taping- kind of hard to hold the camera and flip the pages! Plus at times it's hard to hear her because Harper is singing "Now I know my ABC's" in the background!

Now the flip cards...

I think I might try to make up 3 word flash cards with the words she's learned to see if she can read them (I can handle that). The phrases won't make sense but it would be interesting to see if she could read it in my handwriting. But to add, they do change the font up so the child is not totally memorizing it in the same font. We just need to work on lower case letters with Ainsley because she knows all the upper case but we've never really worked on the lowers. It is fun to see her learn and actually enjoy it. Now we just need to work on it more with Harper...

Change In Plans!

Just got a call and they need to move the surgery up to Thursday, August 6th! I know it's only one day but it changes a lot of plans we had in place. I guess it's for the best. I keep you posted!

Some Good Family Bonding...

This weekend we all spent some quality time together, not that we don't usually do that on the weekends but especially this weekend before Bennett's surgery because we will be away from the girls for a bit during his hospital stay. So we started off at the pool...

Harper belly-flopped jumped in...

Ainsley jumped in...


And then Ainsley shocked us all by jumping in with no floatation device! And yes Liz, if you're reading, it took a little bribing:) But it really didn't take much this time. The conversation went like this:

• Me: "Ainsley you wanna try to jump without your little float belt?"
  
• Her: "No"


• Me: "Okay"

• Her: pauses and starts stepping from one foot to the next like she has to go to the bathroom and then says "Can I get the Fancy Nancy outfit?"


• Me: "Yes but probably not today" (The Fancy Nancy outfit is an inexpensive dress up thing she spotted at Target one time)


• Her: throws off the belt and jumps right in and the belt didn't go back on after that. I was pretty impressed. It's only taken about two years for her to do that.
  

Hey, there's nothing wrong with a little bribing, I was bribed throughout my younger years and it eventually got me a swimming scholarship! LOL ;0

So then I swam some laps. Yes, I know it looks like I'm drowning here but I actually swam 20 laps and then Mike got in and had to one up me or 20 up me if that make any sense and swam 40 laps! You see, we're on a little exercise kick (I'm always on an exercise kick though so nothing new for me) but I know it's hard for Mike with work and traveling and he starting running again so I'm very proud of him for that. Now of course I had to run longer than him but unfortunately it rained on Sunday so I couldn't prove to him that I could complete 40 laps too (that would have killed me by the way!) Just a little friendly competition- I told Mike if we keep competing like this with each other we'll be fit in no time!

Oh, I must add this neat story- last weekend at the pool a woman came up to me and introduced herself (Andrea if you're reading this I hope you don't mind me mentioning you!) and said to me that she found my blog through her sister-in-law's blog Gabriel updates- which I happen to follow. Now, Gabriel and his family live no where near where we live and she said that when she saw Ainsley she recognized her and then Harper and then she saw me and felt it had to be Adrienne from Our Unexpected Journey- now if that's not a small world I don't know what is! So I saw her again today and enjoyed chatting with her and it sounds like Gabriel is a wonderful addition to the family. I mean what are the chances of meeting some one that has such a similar bond unless it's planned of course?? I still can't believe that!

Okay on with the rest of the weekend...After talking with my mom who suggested that Ainsley needed a little alone time with mommy since she's going through a big adjustment with having a new brother and his surgery and all I decided to take her to get a pedicure! She really enjoyed this and loved picking out her color and the lady even painted some flowers on her fingers and toes- so cute!

Just look at the smile on her face- priceless!

Side note: Harper saw Ainsley's nails and insisted that she have hers painted as well so now Harper has hot pink toes and nails too:)

For dinner the girls made their own cheese quesadillas...
Although, did Harper eat them? Of course not-maybe 3 bites tops! She's going through that typical 2 year old faze of picky eating-very frustrating!!

I snuggled with my sweet Bennett...
He's right at 11 pounds by the way!! Hoping he doesn't lose too much after surgery but I've been told they chunk right up so we'll see.

Sunday morning we made Belgian waffles for breakfast- usually it's just pancakes on Sundays but we decided to change it up a little...


We watched "The Incredibles"- not quite age appropriate just yet, the girls kept asking "where's Cinderella, where's Sleeping Beauty?"LOL

Harper dressed up like Cinderella (this is what she wants to be for Halloween- imagine that!)...
We had plans to go to the park and fly the girl's Barbie kite but since it was yucky out that never happened. They've told us the average hospital stay for Bennett's surgery is any where from 3-7 days so we're hoping and praying for a short stay so we can all be back together again. I have a feeling August is going to fly by just as fast as July did! 4 more days to go!!

"As Cool As A Cucumber"...

Up until...hmmm, right about NOW! We've known about Bennett's heart defect and that it would require a surgical repair since February of this year. The surgical success rate for this particular defect is in the high 90's, percentage wise. I've looked at pictures of little ones right after this type of surgery to prepare myself and yes it's scary to picture Bennett like this but I think I can handle it and it's only temporary. Yet, I still find myself struggling some with my BIG "What If". I don't think I need to tell you what this BIG "What If" is either. I guess any time someone goes into surgery there is THE "What If" that goes along with that. I find this "what if" sneaking up on me during my daily activities- when I get on the treadmill, there it is. When I'm taking a shower, there it is again. And worst of all when I look at my sweet Bennett's face and see him smile (which he's starting to do a lot by the way), there it is and it breaks my heart. I know I have to force this thought out of my head and literally cast all my fears and anxieties on God but I hate that this thought keeps coming up in my head. I know it's not from God though so as soon as it enters my head I try to ignore it. Besides it's out of my hands, as if worrying about it would change the outcome.

I think through out this whole process (finding out that Bennett had Down syndrome during pregnancy and his heart defect) I've realized that you can literally waste your life away worrying. You can really miss out on the joys of life. There are so many things that I could worry about concerning Bennett now, next year and 10 years from now but it won't change anything and it only brings me grief so why bother? There is a reason God tells us to "not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own"-Matthew 6:34. He wants us to enjoy each day as we live it and to not worry or plan so much into the future and to rely on him and let him handle our worries.

It's funny because sometimes I feel like if Bennett could talk he'd say "Mommy, I know I'm kind of a big deal and all ;) but this Down syndrome thing really isn't, in the grand scheme of things, so chill out and relax!" He is totally oblivious to all of our worries and concerns and is happy and "as cool as a cucumber". So maybe I should follow his lead through out this journey. Obviously he is a baby and doesn't know any better but just because I do, by worrying it's almost like I'm assuming the worst will happen and not being faithful to God.

So I'm already feeling better about the surgery- just surrounding myself with positive thoughts now and I will try to get back to being "as cool as a cucumber" before Friday!:)

Wordless Wednesday-Bennett: Up Close and Personal

We've Got A Surgery Date...

August 7th-next Friday! I can't believe it's so soon. We will go next Thursday for preop stuff and then get our exact surgery time that day-most likely early in the morning on Friday. We just ask that you pray that for these days leading up to surgery, Bennett gains as much weight as possible and stays strong and healthy- I feel he is beginning to show some small signs of heart failure, so it's time.

Because Kids Live Here...

I saw this post on one of the blogs I follow and thought it was a cute idea. Just simple reminders around the house that kids live here. (This is what I found before cleaning up.) So here goes...

Because kids live here...

We cook dolls for dinner:

My poor dog hides under the kitchen table. Normally Sophie can be found on the couch but the morning I took this, the girls were running (which they're not supposed to be doing!) around the house and she got a little nervous:

Barbie shoes are found all around the house and never actually on the Barbie's feet- annoying! This one was on the kitchen table:

Bennett's diapers are mysteriously disappearing and reappearing on dolls:

I've got a bottle drying station in my bathroom:

My car is not parked in the garage, instead my kid's jeep stays nice and dry:

We've got a basket full of tiny shoes by our back door and no matter how many times I try to take shoes out once they don't fit or a season changes, it still overflows:

And finally, because kids live here this is what my tupperware drawer looks like: (No sense in trying to straighten it up because it will go right back to looking like this tomorrow)

So, do you have any cute or funny reminders that kids live in your house, lived in your house at one time or visit your house?? As if the shrieking through the house isn't enough of a reminder!

We've Got A Climber!

Last night while I was getting dinner ready and Mike was spending time with Bennett (he got back in town yesterday-yay!) we heard a very loud thud from up stairs. I looked at him and then ran. Crying came from Harper's room (well technically Bennett's room but she is still in the crib) and yes, she climbed out and I believe she fell on her head-onto carpet thankfully. Or at least her face because there was a bright red mark on her forehead. She has never attempted this and I've been dreading the time that she actually figured it out, however I'm pretty sure since she kinda got hurt, she won't be doing it again. I hope!



She cried for a bit but was fine and I told her she could not do that again and she just said in a pitiful baby voice "okay mommy". I'd like to keep Harper in the crib until after Bennett's surgery because I foresee putting her in her bed a disaster so we shall see if she tries this again. I must say I was stunned because although she climbs on everything else she's just never really tried that-jumping yes but not climbing. Nap time could possibly become torture...

Bennett Will Be Having Surgery SOON.

Today we went to CHOP for the sedated echo and it went smoothly! They put Bennett to sleep using gas so he slowly drifted off to sleep. I got to kiss him goodbye and then waited with my dad for about an hour while they performed the echo. He woke up very quickly after the procedure and when they called me back he was crying but quickly calmed down once I gave him his bottle- poor thing was starving! The doctor said Bennett got the star for the day for being such an easy baby to work with. As I was getting him dressed though they said they wanted to get one more look at something, of course I was concerned but off went his clothes and he was able to just suck on his paci while they once again looked at his tiny heart. Whatever they were looking for must have been found because the doctor said it was nothing and she would proceed with the paper work and scheduling the surgery. So just as I suspected, nothing has changed. Bennett still has a rather large hole in his heart and the cardiologist said it needed to be repaired sooner rather than later. He will be having surgery in 2-3 weeks! GULP. Wow, that's soon.

I told her I felt like he was starting to slow down on his feeds. Not really breathing harder but it just seems to take him longer and he's not finishing all of his bottles. She suggested we put him on lasix to help make him more comfortable during his feeds. It will help with any fluid that may
be building up in his lungs causing him to work harder to breath during his feeds, thus tuckering out quicker. She just doesn't want him loosing any weight before surgery and I've noticed a slight slow down, not loss, but slow down in his weight. He was 10.6 by the way.

So thank you for all of your prayers for today but the big day is approaching so don't stop praying, please!! I'll let you know of the official day as soon as I get the call.

On a much lighter note, Bennett is 2 months old today!!

I can't believe 8 weeks has flown by- why doesn't 8 weeks go by this fast when you're pregnant?? Anyways, Bennett continues to do well! I've said this to many people but Bennett is really such a good baby! I'm not trying to brag because I've had those sleep deprived times with my other two but I just think I'm surprised. He's very content almost all of the time and he's a type A, schedule fanatic's (like myself) dream! Now is he easy because of his heart and he just doesn't have the energy to get upset or wake up for a bottle at 2 am or is it that he's the third and he just knows his place with his two loud sisters? Or is it a combination of both or is this his personality? I don't know but I'll take it for now!

So at two months Bennett is:

• getting better at holding his head up although sometimes he gets overzealous and throws his head along with the rest of his body back so you have to be prepared for that.


• every so often gives me a smile:)


• working very hard to get his coos out and is almost surprised when they come out- so cute!


• working hard on rolling from his back to front which is a little surprising since most roll from their stomach to their backs first but I think he needs to get his head up more to do that.
  
• holds rattles or toys


• tracks objects
  
• focuses on objects


• ***sleeps soundly through the night until 7 am and sometimes he's still sleeping but I, being the schedule freak that I am, wake him up! The child could have his last bottle at 7:30 and call it a night (I tried it one night just to see) but I want him to gain weight so I still feed him at 10:30. After his surgery, (assuming he will still sleep through the night!) I'll stop offering him this last bottle.

So who knows, after his surgery he could be a different baby- waking up to eat at night and fussier for attention or to be held but I hope not!! He's just not high maintenance like his sister's were at times.

It's funny because I find myself way more excited about the things he does because I guess you just expect a typical child to do certain things at certain times and when he does them I'm so proud of him even if it is just holding his head up! I must say it makes me appreciate the things he does so much more.

Yes, it's hard not to compare him to other babies because whether I like to admit it or not, I'm competitive by nature but I just keep reminding myself "he has an extra chromosome in every cell of his body Adrienne, this is inevitably going to cause some delays" and then for some reason I'm okay with that... at least for now anyway. I guess we'll just take it step by step, one day at a time.

But for now these past 8 weeks have been the most pleasant 8 weeks with a newborn that I've ever experienced. We will see what Mr. Bennett has in store for us in the future!

Brand New!

1 Month Old!

2 Months Old!

I LOVE this kid!

I Knew.

As Bennett approaches 2 months and we've started the therapy, we've visited the cardiologist, I've spoken to the local Down syndrome center and we've let the diagnosis sink in now that he's actually here, I've been reflecting on the day my world was turned up side down, the day I knew my baby had Down syndrome. It wasn't the day I got the phone call from the genetic counselor about the amnio results. It was the very instant the doctor walked into the exam room just days before I got that call. The second I saw her face, I knew. I know I've written about it in my very first post but I've started to think about the people I talked to that day and all the hope they tried to offer me. And how everyone of them assured me that it was a false positive and that they had a friend that was in a similar situation and the baby turned out to be fine or there was a relative that had these results but their baby didn't have Down syndrome. I remember talking to my sister who said it was probably nothing and that the baby would be fine and to not get too upset since I didn't know for sure. But I did.



I remember getting the urgent call from the nurse telling me to come back and that they could get me in for an ultra sound because they didn't have a clear date as far as how many weeks I was and maybe I wasn't as far along as I thought(this can cause false positives) but I knew, I knew I was 17 weeks. I remember agreeing to all of these people saying, yes, you're probably right but all along I knew, I really knew I was the 1 out of the 1 in 10 chance that the doctor told me hours before. As the ultrasound tech looked at Bennett she measured things- everything so far was measuring at 17 weeks and my heart sank a little but then she said things like "oh, there's a nasal bone- that's good, heart looks good, from what I can see" and then she measured one of the femur bones and I saw 15 weeks pop up on the screen and my heart grew heavy because I knew this was a marker. Still she had hope in her voice "well, that can be a soft marker but it could be nothing". After all the hope everyone had given me that day and of course they meant well, I left knowing once again, that the baby inside me had Down syndrome.

As I drove home from the ultrasound I prayed and asked God to just give me peace. I had been crying for a good part of the day and my head hurt, my eyes were swollen and I just wanted peace no matter what the outcome would be in the next few days. And it was almost instantly that I felt this overwhelming peace. It's hard to explain. It was as if all the sadness and worry of that day left and all I felt was warmth and relief. Not that I didn't cry or feel pain in the days to come but for that time that I was alone in the car I knew that it was going to be okay whether the baby had Down syndrome or not. God knew that I was hurting and that I needed something right then and there that perhaps no human could offer.

Now when I look over the crib in our room and I watch Bennett as he sleeps, he is the most peaceful little baby. I get that same feeling of peace I felt in the car each and every time I look at him as if God is saying it's going to be okay.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."-Jeremiah 29:11