Thursday, July 30, 2009

"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!:)

Monday, July 27, 2009

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!

Friday, July 24, 2009

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...

Wednesday, July 22, 2009

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!

Monday, July 20, 2009

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

Friday, July 17, 2009

An Update On Our Appointment At CHOP

Our appointment for Bennett's echo in Philly is scheduled for next Wednesday morning. After talking with the Nurse Practitioner that schedules the surgeries and voicing our concerns about a sedated echo she explained that Bennett will need a sedated echo at some point before his surgery. Doing a sedated echo gives them the clearest picture before going into open heart surgery and they want to see exactly what they are dealing with.

Of course we do want them to have as much knowledge as possible before proceeding with the surgery so we agreed to do the sedated echo. Mike will be out of town but thankfully my parents are going to drive up and my dad will drive with me down to Philly while my mom watches the girls. I honestly don't know how I would get everyone to CHOP by 8:30 Wednesday morning without help so this is a huge relief.

If you will, please pray that everything goes well during the echo and that the doctors can get a clear picture of exactly what they need and how they need to proceed.

Hope everyone has a great weekend!

Thursday, July 16, 2009

Under Construction...

I decided it was time to change the blog a bit. So, I'm trying out some new backgrounds and headers- although I absolutely loved my header from before that Bethany so kindly made me but now that Bennett is here I had to include him! I don't have all the skills that Bethany does with her camera so I'll do the best I can! Anyways, bare with me as I mess around with it:)

Possible Change In Plans For Bennett's Heart?

Okay, I may be jumping the gun before I actually know anything but I thought I'd get some opinions from those that have been there.

Bennett is now over 10 pounds- this is great! The cardiologist told me to call him when this happened and we would go ahead and proceed with scheduling the surgery. So I spoke with the nurse coordinator at CHOP yesterday and she was a bit surprised that Bennett is not showing any signs of heart failure and is growing well. She said that sometimes in utero the baby is diagnosed with a Complete AV canal defect but then part of the VSD closes some, which they then call a Transitional AV canal defect and this would possibly postpone the surgery until Bennett is a year old. She also said it could just be that the pulmonary vascular resistance has not dropped which could explain the fact that he is not showing any signs of heart failure. I tend to believe this is the case but what do I know?

So now she would like to review this with the doctors at CHOP and most likely bring Bennett in for an echo next week in Philadelphia to see what in fact is the case and if we just need to proceed with the surgery in the next couple of weeks or hold off because he doesn't need it right now. The echo may need to be a sedated echo because a non-sedated echo would require Bennett to be still for 45 minutes and that's not going to happen unless he's asleep. We're not thrilled about him being sedated unless absolutely necessary so we need to look into this further.

Well to be honest, I was not expecting this, as our cardiologist here did not mention that this could happen and it could be that nothing has changed and it's just the PVR that has not dropped yet. I guess we will find out for sure next week what the plan will be. Either way she did say that if in fact it is still a complete AV canal defect that she did not see a problem with getting Bennett into surgery before Labor Day and with the surgeon we want. That is good news too.

So I don't know how I feel about this. Part of me just wants to get this over with because I've known about it since February that our baby would need this surgery early on and the other part of me is feeling like okay, I won't have to send my tiny infant into open heart surgery.

For those that have been in my shoes or know of others, did your babies have symptoms or no and if they didn't, did they still have the surgery early on, meaning they still had the complete AV canal defect?

Monday, July 13, 2009

Every Woman Needs One Of These...

A fun purse or diaper bag! Well in my opinion anyway! Here's why: If you're like me, you have kids or even if you don't, you may not go out as much as you used to when you were younger, so your everyday outfits are pretty simple. If we go to target or a birthday party I will wear a simple skirt, or khaki shorts with a tank or jeans with a shirt in the winter. So how do you spice up the outfit a little more? With a fun purse or bag! I know, big, funky prints are not for everyone but maybe try a bright color. I don't know, it always makes me a little more cheery to be carrying a fun bag when I don't have time to agonize over what to wear.

And guess what?? It's reversible!! Love it!

But wait, there's more! Here's the diaper bag I have for Bennett! I wanted something fun (of course) but also something that did not look too much like a diaper bag. Check out the matching make-up bag with my monogram on it!

So where did I get these cool bags? None other than my super, talented sister Alexa! Her company LexiWynn Designs is based out of Chicago and she makes the bags exclusively for that area so unless you live near there, you'll have to look elsewhere- for now anyway. She is working on updating her website but she mainly has home parties where people can pick out their own fabrics and designs. She stays extremely busy but was kind enough to make me some things! Thanks Lex!

Now, every little girl should have one of these:

Okay, so I know not every little girl will keep a bow in her hair and some moms just aren't into the bow thing but my girls have been wearing bows literally, since the day they were born so I'm always looking for cute hair accessories. I have been wanting to get these and we went to a birthday party over the weekend at "Sweet and Sassy" and I just had to get them! Not sure if Harper will keep the head band on for long and I got her one like the one Ainsley is wearing, which I thought would stay on better but she fussed a little about it-poor Harper, she has a rather large noggin as we like to call it. I'll have to work on getting her to wear the elastic one. But aren't they cute? I wish I could wear one...

What do you think??


Ha, ha-alright, so maybe not;)...

Oh my, who is this cute baby and how did he get on a post about fashion??

I couldn't resist!:)

Have a great Monday!

Thursday, July 9, 2009

Going To A Cookout This Weekend?

Bring these! Especially if kids are going to be there!

I made these over the 4th of July weekend and all the kids thoroughly enjoyed them. Very easy to make- peanut butter cookie dough, rolled into 1 inch balls and put into mini muffin pans at 350 degrees for about 12-15 minutes and then press mini snickers and m&ms into cookies as soon as they come out of the oven. That's it! I suggest unwrapping the snickers while the cookies are baking. I got the recipe from the latest Southern Living Magazine so you can check out the other variations for this recipe. I'm telling you, they're yummy and a crowd pleaser for sure! Plus they look pretty too:)

Edited to add: also a great recipe for kids to help with- Ainsley enjoyed helping me with this one!

Wednesday, July 8, 2009

Huge Relief, I Think...

Today I had my annual dermatologist appointment which I have been quietly stressing over for months now. I was convinced I had melanoma or at least some bad moles that needed to be removed.

I had the whole gang with me which was another stresser to say the least because when I walked into the office which was terribly dated, there were 20 other people cramped in this tiny room and no seats left- great! My appointment was at 12:30 and Harper takes a nap at 1:30 so she was already started to act up a little bit and there was no room to act up! To my surprise my good friend Ginger who is a PA at an office near by popped in and saved the day! It was her lunch break so she offered to take the girls while I had my appointment-thank you Ginger!! Huge life saver! Of course Bennett had to eat right when the doctor came in but he (Bennett) waited patiently after I got about an ounce in him. The doctor said that none of my many moles looked suspicious but he would like me to come back in 6 months due to my history. I said "Really, are you sure, what about this one or this one" He just laughed and said to just be careful and watch for any new or changing moles. Thank you Lord!!

Of course I'm now thinking, was he really a good dermatologist? Maybe he missed something. I mean I feel like all my moles look like the ones they warn you about! But I guess I should relax now but seriously a day has not gone by that I haven't thought- yep, it's melanoma.


On another note, Bennett had his first OT (occupational therapy) session yesterday and it went well. She didn't do much except ask me lots of questions and observe his eating. She did hold him for a while and talked so sweetly to him. She couldn't get over how cute he was, naturally:)

You know, ever since I found out about Bennett and started blogging and reading other blogs about DS I've learned the lingo and how it's better to say a baby or child or individual with DS rather than a Down's baby or a Down syndrome baby. She, however referred to children with DS as Down's kids or Down's babies and it kind of bothered me but then she spoke so sweetly to Bennett and you could tell she really felt he was cute and lovable and I thought to myself, she's not trying to be mean in any way by calling him a Down's baby, she just doesn't know about the whole people first before the condition, many people don't. And it made me realize maybe I shouldn't take things so personally. This woman is here to help my child and she obviously has a love for all children if this is her profession so if she says it incorrectly do I really need to correct her? Of course every time I asked her a question regarding babies with DS I said it correctly hoping she'd pick up on it.

I also liked the fact that she didn't try to compare Bennett to any other 6 week old. She never said oh, he's not holding his head up like he should or by 6 weeks most babies are doing this or that. She said he was doing great and babies with DS can and will do everything other children do just at their own pace and it may be at a typical pace for some things or it may take longer for some things. She also said I can do many of the exercises while doing daily activities like while changing his diaper or while holding him so it doesn't have to be this overwhelming pressure to have "therapy time" every day. She comes again next week so hopefully I will get more exercises to work on.

Bennett is definitely trying to coo and add to the noise around here. He's making all sorts of little faces and I'm pretty sure he's smiling every once in a while. He's starting to find his hands and his newest trick is to pull his paci out which can be annoying because then he starts crying. Still sleeping soundly from about 8pm-7am with a "dream feed" around 10:30 pm. He really is an easy baby. He weighed 9lbs 13 ounces last night! I'm hoping to be able to call the cardiologist next week maybe to get us scheduled for surgery. I can't believe he will be 7 weeks on Friday!

Tuesday, July 7, 2009

Part 2- Picture OVERLOAD!!

Okay, I have a ton of pics on this post so stick with me if you're interested. This time I'll let them tell the story, for the most part. On Tuesday the kids had a huge surprise when the neighbor, George decided to show up in his helicopter!! He thought it would be fun to take the older kids for a ride and they had a blast as you can imagine! Mike, Seth, Micah and Ty all went up while Alexa and I watched her entire family and the bread winner in mine go up into the sky but they returned safely and got some really pretty pictures while they were up there...

Mike was excited about his first helicopter ride...

Ainsley couldn't go up but just sitting in it was good enough for her...

Micah enjoying the view...

Seth took some great pics from above...

Thursday we had our Crab feast and even the girls tried some and liked it!

My dad is trying to explain how to open the crab and get the meat out-I wasn't thrilled about this process so Mike ended up getting most of the meat out for me.

Friday we had our family pictures taken by a neighbor, Gloria. As many of you know that have children, this is a stressful event! Just trying to get a few decent pictures can be very challenging when all the kids want to do is go play in the pool! But they managed to cooperate for some and I think they turned out nice...

Seriously, Micah and Ty could be in a magazine!

My sister's family-beautiful!

My parents with all their grandchildren...

I think I messed with the lighting too much on this one...

This is one of my favorites- Mike with sweet Bennett...
On our last day we celebrated the 4th of July! My friend Jen came down with her two boys- so good to see her! Jen and I met in elementary school and last saw each other about 12 years ago but reconnected through facebook- gotta love facebook!

Harper playing catch...

Alexa with her dog, Bear..
Bennett looking patriotic...

Ainsley is not a fan of fire works so once it started getting dark she was either in someones lap or crying...

With Aunt Alexa...
Something set Ty off crying so Ainsley melted as well...

All ready for bed but still cautiously sitting on Grammy's lap while the fire works go off...
A special thanks to my parents for having us all for the week!! I know 4 adults, 5 kids, 4 dogs, 2 cats, toys everywhere, stepping in dog throw up numerous times, cleaning up dog throw up numerous times and basically just having your house taken over by a herd but always waking up with a smile isn't easy. So we thank you and hope to do it for many years to come, if you'll have us!:)