Monday, August 31, 2009

Rub-a-Dub-Dub...

Bennett's finally in the tub!


Of course this is not Bennett's first bath but it is the first time I've put him in the baby tub. I have been doing sponge baths because frankly I was lazy and didn't want to go down to the basement and get the tub and then he had his surgery and he's not supposed to be submerged while his incision is healing. Well, I wouldn't be submerging him at this age any way so I thought it was time for him to get a feel for a "real" bath. He seemed to like it much better than being washed down with a wash cloth while lying on a towel on the counter-go figure! (If you look closely you can see his incision-not bad, huh?)


It got me thinking about how I have pictures of all my kids wrapped up in their towels after a bath- nothing cuter if you asked me! Here they all are at about the same age, warm and snuggly after their bath...


Ainsley-check out that hair!

Harper-chub-a-lub

and Bennett-trying to get that thumb in and I believe in the same towel as Ainsley was in.

This is something Harper loves to do just about every night- pretend to "sleep" in Ainsley's big bed. She likes to get in bed with Ainsley and we say our prayers and I turn the lights out, shut the door and then I give them about a minute to "sleep". Then I come in and she happily jumps into my arms to be taken back to her crib, well, Bennett's crib but I plan to have her out of that and Bennett in the crib in another month or so- stay tuned for that!

Thursday, August 27, 2009

Bennett Will Do It.

This simple T-shirt with this simple slogan may seem well, simple but it means so much more. Jennifer from Three's A Charm has started a great campaign with these simple t's to show that kids with Down syndrome can and will achieve. She is selling the shirts for $21 (In honor of Trisomy 21) and with the money, she purchases the book "Gifts 2" and donates it to her local hospital, genetic counselor's office or a pediatrician's office.

This is what I like so much about the campaign- getting information through "Gifts 2" to the parents who have received a prenatal diagnosis of Down syndrome. We, like many other parents never received any information or hope when we first found out about Bennett. I was left to surf the net but when I left the doctor's office, some pretty scary thoughts were running through my mind. Not one glimmer of hope was given to me. Giving parents or moms this book will show them that their child can and will accomplish things in life, the wonderful experiences that their families have had with their children and that Down syndrome is NOT the end of the world!

And now to the other important part of the campaign- the little shirt and announcing the fact that children with Down syndrome will do it, can do and are doing it! And the one that is nearest and dearest to my heart: Bennett, who may not be doing much now, (he's just 3 months-give him some time) other than the that minor thing called OPEN HEART SURGERY that he seemed to cruise through (by the grace of God of course) but for now the shirt symbolizes the future for him. I have no doubt that Bennett will walk, talk, run, play, go to school (with his sisters), have friends, love (most likely unconditionally which doesn't happen with us "typical" people) and be a wonderful brother and son. And I know when he does first sit up or drink from a sippy we won't take it for granted because for him it will be a big deal and that makes it even more fun!

This all goes back to my post "Will It Make A Difference". I think it is so important for people to know the good and the bad about Down syndrome not just the bad (or in our case and most other's nothing at all) when they are faced with the possibility that their child could or does have DS prenatally. That's why I love what Libby has done and what Jennifer is now doing. One of these days when I get my feet grounded in this whole DS thing and can manage to juggle three kids, I'd love to get involved in developing some sort of pamphlet for local OB offices and especially genetic counseling offices to give to parents or mothers who are lost after receiving their diagnosis. Like I've mentioned before just something that shares the good and bad. I'm not saying to sugar coat DS because yes, their are serious medical issues that can occur and it won't be easy. But to see a cute baby on the front and show that along with the possibility of medical issues, is also the possibility of great love and accomplishments, just like any other child really. Besides, just because the baby has DS does not automatically mean he will have a heart defect or eye problems or cancer or whatever else can happen at a higher incidence with DS. And believe it or not some people are even told that their child will never walk or talk! I've never been told this and besides it's just pure ignorance but some people really think that!!

I have a feeling Bennett's sisters are going to be his biggest fans;)

So one of these days- that's my goal. Thanks to the ladies that are already making a difference and showing the world that our kids can do it and will do it!

Monday, August 24, 2009

I'm Not Alone In This.

So I have to share this interesting encounter I had with my dental hygienist. I came in and we made small talk- she asked how my girls were doing- I have only been to this office once before while I was pregnant but she was the one that cleaned my teeth the last time so I guess she remembered them. I told her they were fine but thankfully I had a friend watching them and I just had Bennett with me. He was in his stroller all covered up because I thought he was sleeping plus I'm a little nutty about germs right now.;)

Anyways, when she was done with my cleaning and we were waiting for the dentist to come in she kept peeking through the little window on Bennett's stroller and noticed he was awake so I opened it up so she could see him better. She made the usual comments "so cute", "aww" and then she couldn't keep her eyes off of him. She just kept staring at him so I'm thinking to myself :does she know, does she think he looks like he has Down syndrome?

After a while she said "Now how old is he?"

I said: "He's almost 3 months old" and then I proceeded (and I have no idea what possessed me to divulge this information but I felt like I needed to for some reason) to say that "He actually just had open heart surgery last week"


She said: "I was going to say because I can see a little of his scar" and then she said "what type of heart issue did he have?"

Oh boy, here goes: "Well, he has Down syndrome and the type of heart defect he had is very common in kids with Down syndrome, AV canal defect" again, not sure why I had to tell her he had DS, I just really felt like I needed to.

Waiting for the "Oh, I'm sorry" (which to this day I have never gotten by the way)

But instead, much to my shock and surprise she said:" I had a brother that had Down syndrome, he was in and out of the hospital, very sick, I was in eighth grade when he was born"

My jaw about dropped. Why I think I am the only one in the entire world that has a child with Down syndrome is beyond me. I know this is not the case of course but when I find out that someone I know has a child or a sibling or someone in their life with DS I'm always just amazed. Maybe because I have never known anyone personally with DS, until now.

So I said: "You said you had a brother, did he pass away?"

Her: "Yes, he was just 4 months old." "We just celebrated his birthday on August 2nd, he would have been 11 years old." "We each have pictures of him and try to imagine what he would look like now"

Me: "Oh, I'm so sorry to hear that he passed away." "And he had Down syndrome?" There I go again, just couldn't help myself - I was just amazed.

Her: "Yes"

She proceeded to tell me he was at CHOP for most of his short life- the same hospital that Bennett went to for surgery and that they (the siblings) would go and visit him on the weekends. As I was leaving she said she was so glad I brought Bennett in.

Ahhh, so maybe that's why she couldn't take her eyes off of Bennett. She knew, I believe and whether or not it brought back sad memories or wondering what her life would have been like with him or if her brother looked similar, I don't know.

You know, sometimes I hold back and I don't mention the fact that Bennett has Down syndrome but I feel like every time I don't hold back, it reveals something about someone that I never would have known and more times than not it shows me I'm not alone in this. Stay with me here...

Like 2 weeks ago I was responding to an rsvp for our neighborhood block part by email. I emailed the person that was organizing it (I did not know him at the time) and under my signature on the email is my blog address. I had totally forgotten that it was there- I added that a long time ago when I first started the blog. He writes back saying that he got my rsvp and that he happened to click on my blog and told me how lucky he was to have an uncle with Down syndrome and how he was the nicest person and wouldn't hurt a soul. He then sent me The Special Mother poem. How thoughtful was that?

I think my point in "I'm not alone in this" is that we sometimes keep things to ourselves about our lives because well, maybe we feel like we're the only ones dealing with it but when you open up a little or reach out to someone and sometimes by accident, you may realize you're not the only one. And the more I do, the more I realize Bennett is not something I have to "deal" with, he was born with a purpose and so far he's brought out the good in people time and time again.

So while I'm fully aware that many of you that read this blog do not have a child with DS or have any one in your life with DS, you may have things going on in your life where you feel you are alone in your own "issues" because maybe no one in your "real" life as opposed to the internet or phone is going through that, you'd be surprised. I'm not saying to tell people every little thing but keeping it bottled up and not being some what open about it can end up hurting even worse. I don't know, that's just been my experience so far.

Saturday, August 22, 2009

3 Months Old!

Today Bennett is 3 months old! His main accomplishments to date are his feeding abilities and his weight gain. Which for a baby that had a huge hole in his heart, that is a big accomplishment. He now takes about 5-7 ounces (in about 25 minutes-used to be marathon feedings) every 3 hours and weighs 12.6 pounds. He was just under 11 pounds the day of his surgery two weeks ago. And to think I thought he was going to lose weight during his hospital stay!

Bennett is getting much better at holding his head up and I've started putting him in the bumbo chair just for short periods of time and while he's still got some work to do, he's definitely making progress...

Okay I'm laughing because this picture is sooo deceiving...he held this position for about 5 seconds before his head flopped back.


This is more what it has been like but like I said, he's making progress.

I received a couple of comments regarding his tummy time and when I could start that. I went to the cardiologist and he said tummy time could resume once the scab from his chest tube came off which he thought would be in a week or so. So I was incorrect in thinking I had to wait to put him on his tummy and the scab fell off so we've resumed that but I can tell it's a little uncomfortable for him. Or maybe he's just out of practice because he's having a hard time lifting his head when he could lift it some before the surgery. Again, it's a work in progress.

Another really cute thing Bennett has started to do is suck his thumb. I know, I know, this is probably not the best habit to encourage but coming from someone who sucked their thumb until they were 7...yes, I said 7... it's not going to kill him and I'm pretty sure all my kids will need braces at some point. So for now it's just his little self soothing method and that's something babies his age are supposed to be doing so we'll just count that as a little milestone;) Here he is trying to figure out the thumb sucking thing...

video

********

So the overall consensus from my post about the washing hands sign was that it was a good idea. I think the fact that Bennett had open heart surgery and he qualifies for the RSV shot because of his heart (still waiting to hear from my ped. though about that-grrr!) it's okay to have it on his car seat. If I look a little snotty because of it...oh well. If he didn't have OHS, I wouldn't have it on there but he did so it will stay. But like a friend of mine said, Ainsley will be sure to tell anyone and everyone to "...not touch the baby" before they even see the little sign-lol. She's just a tad bit protective of her baby brother.

Happy 3 months Bennett! I love you bub!

Friday, August 21, 2009

A Fruity Surprise!

When this arrived I thought maybe it was for Bennett and then I saw that is was for Ainsley and Harper and inside the card said:


Isn't that sweet??! I'm so excited for them to be in Brian (Mike's brother) and Lauren's wedding!! And what a cute way to ask!! A perfect summer treat!


The wedding is in December so we have about 4 months to "practice". Ainsley is already asking "what color dress will we wear?" But I have to be careful...when something is talked up too much and it involves Ainsley, she tends to crumble under the pressure. And I don't want a meltdown or two at their wedding!!

Thanks Lauren and Brian, the girls loved it (so did I:)) and they are sooo excited!

Wednesday, August 19, 2009

Is This Just Too Much?

What would you think if you saw this? A friend from the baby center website sent this to me while I was pregnant and I thought it was very nice of her. With RSV and Flu season coming we really can't have Bennett getting sick with his heart and all. Most adults know not to touch without washing their hands but it's the kids that don't and you know how kids are, they come running up and before their mom can say "Stop! Don't touch the little baby!" it's too late. Maybe this little sign will stop them and they'll ask what it is. What do you think? Am I being too neurotic here or what? I know he's my baby and I shouldn't really care what others think but well, I do. ;)

Tuesday, August 18, 2009

He'll Give You Strength When You Need It.

Looking back on Bennett's surgery and really back to December when we found out about Bennett's diagnosis we have been on a roller coaster of emotions. For weeks before Bennett was born I would be fine and excited about his birth and then I would quickly turn and be terrified of it all and the future. As we waited while he was in surgery one minute we were fine, smiling, joking and the next minute were were crying, terrified of what might happen. I remember talking to my sister on the phone while we waited and I told her how I just didn't want to see Bennett on a breathing tube when he came out and I was afraid of what he might look like-I had seen pictures and they were scary. She said:

"God will give you the strength for that when you need it. You don't have it now because you don't need it now but when the time comes, he'll give you that strength to get through it."

And she was so right. I thought about when I handed Bennett over to the doctor just an hour before to take him to surgery and how I thought I would start bawling but I didn't. Of course I cried a little but it wasn't as bad as I thought it would be. God was there, when I needed him at that very time to give me strength for that. And when I walked into Bennett's room to see him for the first time after surgery, God gave me the strength to see my little baby laying there all hooked up to a million wires (no breathing tube by the way) and it wasn't that bad. I was calm and just happy to see him.

People say "I can't imagine having to go through what you've gone through" and of course you can't and it scares you to think about having to go through something like that. Just like it scared me or how I think I could never deal with having a child in the hospital with cancer or losing one of my parents or family members or taking care of my son that my live with us when he's grown. That's because we don't have that strength to get through those things now because we don't need it right now. God knows when we need that strength at just the right time. His timing is perfect. I'm no stronger than the next person. But when I look back at the times I was most afraid of something, it may not have been easy but I had the strength to get through it and it was not nearly as hard as I thought it would be. So remember that next time you think you could never endure something or you just won't be able to handle some crisis. I believe God is just waiting for us to ask him for that strength when we need it at the perfect time.

Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand-Isaiah 41:10

For now, even though they say life can be like a roller coaster, it has it's ups and downs and sometimes flips, Mike and I are hoping to stay off of the big roller coaster and hang out on the kiddie rides for a while!;)


Yes, I think this ride will do for now...fun but not scary! But when or if it's time to jump back on that big roller coaster I know God will be there to help me through the scary times just when I need him to.

Monday, August 17, 2009

No Rest For The Weary!

Now that Bennett is home we have to do some things a little different to help his incision and chest heal. That means no picking him up under the arms, just scooping and no tummy time for several weeks. Tummy time is so important at this age for strengthening just about everything so it bothers me that he can't do this but that doesn't mean that I'm gonna let him slack off! I've got him in all sorts of different positions that will work on holding his head up better and of course I'm always trying to engage him with his toys. At the hospital they gave us the coolest gadget to use for positioning him in many different ways. I have no idea what it's called but it's very soft and flexible and can be used to help keep him on one side, tummy time (eventually), sitting up (eventually) and as you can see in the pictures below, propping up after eating (reflux) and helping him to reach for his toys.

We also got to take home another boppy that is much plumper than the one we had so I'm loving that too. We should be able to resume occupational therapy soon so this little guy doesn't get much of a break. I know, I'm a mean mama. Honestly though, it's amazing how quickly he has bounced back like open heart surgery was nothing.

Oh and remember how I've said Bennett never really crys and he's so easy going? Well, don't get me wrong he's still a great baby and easy going (still sleeping through the night!) but ever since we've been home after surgery he's letting us know that he indeed can cry and it's almost like he's enjoying showing us just how well his little lungs work! He's not crying just to cry but when he's tired or wants to eat or wants his paci, he let's you know and he never really did that before. He's got a little 'tude! Anyways, here are some pictures of him "playing"...


He looks thrilled, doesn't he?
Hello again bug friend.




Okay mommy, I've had enough!

I love that little lip!

Saturday, August 15, 2009

Liam's Blog

I just found out that Liam does have a blog! I spoke about Liam while we were in the hospital with Bennett. He is doing better but go check out his blog and let his parent's know you're praying for him! Click on the link: Little Liam

Friday, August 14, 2009

Rain Drops Keep Fallin' On My Head...

Raindrops keep fallin' on my head
But that doesn't mean my eyes will soon be turnin' red
Cryin's not for me
'Cause I'm never gonna stop the rain by complainin'Add Image
Because I'm free
Nothin's worryin' me
Remember this song? My mom always used to sing this to me when I was sad or down about something. Ainsley has been complaining of the rain lately or any time it rains actually and she's been asking to go outside and "jump in the puddles" next time it rained. So finally we did...


Monkey see, monkey do.


This is so much fun!

Ainsley found out that chalk worked even better in the rain!

I thought this was fitting since it was our anniversary. That says Adrienne and Mike by the way;)

I think I'll start singing this song to Ainsley when she gets sad or starts complaining about something. It always seemed to cheer me up!

Thursday, August 13, 2009

9 Years Ago Today...

Mike and I were married! I was straight out of college and Mike had just finished up grad school. We had no jobs and no place to live. Mike interviewed for a job right before our wedding and little did I know the entire honey moon he was on pins and needles about getting this job. I'll never forget the day after we got back from our honey moon, we packed up the U-haul, left my parents house in VA and drove down to NC to stay with Mike's parents until Mike found a job. Just as we were pulling out (Mike was driving the U-haul and I was behind him) he called and said "do you want to live in Myrtle Beach?" I said "Sure, why?" He said "I got the job!" And so our life began. He is still with that same company today by the way. We've moved every 2 years since then. Not always to a new town but to a different house. Not sure why, that's just how we do things.

We actually met 13 years ago on the swim team at East Carolina University in North Carolina. I was there only 2 weeks and Mike swept me off my feet. I was a freshman and he was a junior and we were basically inseparable but look where it got us! I can't imagine being with anyone else. Mike is a wonderful husband, father and friend. He's truly the best to me and treats me like a queen! I look forward to many, many, many more years to come. I love you Michael!!! Happy Anniversary!

Our wedding day...
August 13, 2000 Through the years...

This was one of our first dates-I was 18, Mike was 20. We drove down to the beach for the day with 2 other friends. If you look closely Mike has a cast on his arm because he broke it while, no joke, trying to impress me on the pool deck while doing sit ups during our dry land routine. I have no idea how you break your arm during sit ups but I think it's sweet that he was trying to impress me:)

This was taken the same day we got engaged. I was just 21 and he was 23, we were so young!!

At one of our showers.
Our first Christmas, no kids, just Blitzen- he was my Christmas present!
On a cruise that Mike won for having top sales his first year with his company. And to think he was so worried he wouldn't get that job! I'm so proud of him!


And 9 years later we've got three wonderful kids...life is good.

Tuesday, August 11, 2009

See You Later Alligator!



That's right....we're going home TODAY!! Bennett is our little hero. He has now officially joined the countless other little babies that have endured open heart surgery and is truly a different baby. I have never seen him smile and coo and eat as much as he has today! I think he knows he's going home not to mention he has a repaired heart! He had a good night last night, his lungs are clearing up and his O2 sats have been much better. They did a final echo and there is mild leaking of a valve on his left side which is considered normal after this type of surgery. All in all they are pleased and feel he is fine to go home!

Mike and I have been very pleased with The Children's Hospital of Philadelphia. I would highly recommend it to anyone, heaven forbid they had to bring their child here. The staff is wonderful, the doctors are top notch and the hospital itself is just really nice. We are very thankful for all of Bennett's doctors and nurses here at CHOP for taking such good care of him!!

But as much as we loved CHOP, we truly hope that we won't see them later!!;) Once again, thank you soooo much for all of your prayers!! Now we are heading home and looking forward to seeing our girls!!!

Monday, August 10, 2009

Oxygen Is Our Only Hurdle

We're on day 5 now and the only thing that is keeping us here is the oxygen. The doctors reviewed his chest x-ray from this morning and again it looks better but there is still just a little bit of atelectasis in his left lung, which means a tiny part of his lung is not fully inflated which would cause him to need just the tiniest bit of O2. It's very common after surgery and since Bennett it just an infant they said it's much harder to clear his lungs than it would be for an adult because an adult or even a child can get up and move around, cough, blow bubbles etc. to help clear out the fluid but you are limited with infants.

So they've started aggressive chest PT with a chest vibrator that basically massages Bennett on the back and chest and it breaks up any mucous or fluid. Also changing the position he is in frequently, can help. They said if he can keep his sats above 95 for 12 hours, we can go home-talk about pressure:). They will now do the echo tomorrow and hopefully by that time he will have met the 12 hour requirement and we can leave! We're going a little stir crazy here but we've been able to get out outside while he sleeps and this part of Philadelphia is very pretty and there's great restaurants so Mike and I have been able to have some nice dinners which never happens with 3 kids!! We're thinking these dinners can be our anniversary celebrations since it will be here in just 3 days and we're thinking we'll be back to the daily grind by then.

Anyways, just asking you to pray that Bennett's lungs will clear up and his sats can come back up quickly so we can go home. I know that if this is our only issue right now then I should be very thankful and I totally am. I'm so proud of Bennett but I know this could have been much worse so I thank God every day for the experience we've had. I also continue to pray for Liam and I hope you will too. I did speak to Kristin and since Liam is not my son I don't feel it's my place to disclose all the details but he is doing a little better but it's going to be a tough road and he still needs so many prayers. So even know you don't know this family because I really don't know them either, they still need prayers to lift up their son.

Here are some pictures of Bennett getting his massage chest PT and some playtime:
One side


and now the other side.

Mike playing patty-cake with Bennett's feet.
Bennett smiling at daddy- such a happy baby!

Sunday, August 9, 2009

Bennett, Bugs and Baby Legs!

Bennett had a great night last night! He's eating better, heart rate is down, sats are coming back up and he's off the morphine. He's much more alert today and is starting to smile again! I decided he'd be much more comfortable in his own clothes and the nurse said it was fine to dress him so yesterday he got a bath and today we put him in his onesie and baby legs!

He is back on oxygen temporarily until his lungs clear up and he can maintain his sats above 90-95. His chest x-ray looked better than yesterday and the nurse just told us that he will have one again tomorrow as well as an echo and she said when they order the echo that usually means you're going home very soon!! So maybe Monday or Tuesday?? We're so excited! We miss the girls so much and can't wait to have everyone under one roof again!!
Here are some pics from this morning:
Back on O2 but we're not gonna let that get us down!
(he really does look like Harper here)



These are Bennett's bug friends- something for him to look at and swat at while laying in his crib.




Mommy interrupting Bennett and his bug friends.



Check out these baby legs! I love these! I wish these were around when my girls were babies- great for Bennett here in the hospital but they will also be good for when he's crawling-(one size fits all). He's gotten quite a few compliments on his baby legs-hey, my boy is going to be stylin' even if he is in the hospital!

Saturday, August 8, 2009

Bennett Post Op Update: A Couple Issues...

Yesterday Bennett was moved into the step down unit and was doing well except for his eating- not as good. A speech therapist is coming today to watch him eat which is what I've wanted from the beginning because he's always been a sloppy eater and doesn't have a great latch so hopefully she can help with that.

Last night he could not seem to settle and his heart rate was high all night. They think that is due to pain. I left at midnight to sleep at the Ronald McDonald house because I was exhausted and then when we returned this morning his O2 sats were low, even while he was sleeping. So the doctor looked at his chest x-ray and she said that it is very common after surgery to have very small parts of the lungs to collapse as well as fluid to be around them and that is what she is seeing. She said it is not serious and again very common and it is not like a collapsed lung-which of course is what I was thinking. They will most likely increase his lasix and do chest PT where they will tap on his back to get things moving around since he can't cough like adults can to get things moving in the lungs. The nurse said they may want to put him back on oxygen temporarily but we have to wait until they do rounds to see. Right now he just has a mask near his face, blowing oxygen into the air around him to help bring his sats up and it is helping.


He just received more morphine (they had discontinued the order earlier) and his heart rate is coming back down. I think Bennett surprised everyone by doing so well but then he is only on the beginning of this 3rd day post op so he still needs those meds so hopefully this can take the edge off of his pain. They removed the dressing and the scar isn't too bad but it isn't pretty either. Please pray that his lungs can clear up and get back to how they should be and his pain can be resolved.

But again, I've been told this is all normal after surgery and nothing to be alarmed by. So I'm not alarmed, yet:)



I did see Kristin with Liam from a distance, did not talk to her. Not sure how Liam is doing but if I see her and can talk I will tell her people are praying for her son. Thank you for praying for him! She does not have a blog that I know of for those of you that asked.



Here's a picture I took of Bennett without his bandage:

Friday, August 7, 2009

Holding Bennett, Moving Out of Intensive Care and A Prayer Request...

Today they took Bennett's chest tube out as well as the pacing wires that were going to his heart in case he had any arrhythmias(he didn't) and the nasal canula is out as well so Mr. B is a little more comfortable. He's eating great-taking 4 ounces at every feed and could probably take more but they want to take it easy. He still has not had a bowel movement so we (meaning the nurse and I) tried to give him colace by syringe- that was fun! I think he swallowed maybe half and spit out the rest so we'll see if that helps. That seems to be his only real pain right now- constipation which is common after surgery so I think once he gets things moving he'll be a happy camper!

The doctors just came in and said that Bennett is doing so well that he doesn't need to be the intensive care unit and will be stepping down to the cardiac nursery-yay! And it looks like we will be getting a private room again! We were able to get into the Ronald McDonald house which is really nice but with this private room I am able to sleep right next to Bennett so that's been wonderful. God has answered all of our prayers thus far and we couldn't be happier and we're just soooo thankful!!

I want to mention a neat encounter I had yesterday and a prayer request. While I was pregnant I was on the Baby Center website and joined the Down syndrome Pregnancy support group. All the women on there were either in my shoes or had been there and it was a wonderful support for me. I "met" a girl named Kristin on there and it so happened that her son was due just 2 weeks after Bennett and had the same heart defect and would be having his surgery at CHOP with Dr. Spray like us. We didn't think it would be at the same time though but wouldn't you know that it ended up her little Liam had his surgery just 2 days before Bennett and I got to meet Kristin yesterday while waiting for Bennett's surgery to be done! Things like this just don't happen people, they happen for a reason and it was so nice to meet this girl that went through what I went through during pregnancy and then now with surgery. Her son however did not have a successful surgery and had to be taken on and off the by-pass machine several times during surgery and as far as I know may still be on it (called the ecmo machine) She said it was touch and go for the first 2 days but when I spoke to her she thought that he was coming around and was going to be okay. It just breaks my heart because I know that could me Mike and I. I've see many parents just waiting in the wait area, clinging onto hope and prayer that their baby will be okay and it's really very sad and scary. So please pray that Liam will come through and recover from all of this and for peace for his parents. Last night the nurse said that the doctors could not come to see us until later because there was a very sick baby across the hall that they needed to focus on and I'm just hoping that it wasn't Liam and that of course that this baby was okay. I have not seen Kristin since yesterday.

Here are some pics from today...


The nurse propped him up with a boppy and he really seemed to like this.




Holding my boy!



I'm so happy!


Yes, we're exhausted. Hopefully I will get better sleep tonight as long as Bennett is able to rest.

We are getting ready to go to lunch and then packing up to go to the step down unit. Maybe tomorrow we will know more about being discharged!!

Thursday, August 6, 2009

I Think They've Got It Under Control...

Bennett is finally resting! He just finished taking 3 ounces and is about to get his O2 off so he will be breathing without any assistance! He is on Morphine and Tylenol for pain and the other drug (Diazapam, I think) helped calm him down but I think the combo of the pain and sedative really helped and now he's off the sedative and the pain is under control. No more moaning! He ate great and could easily take more but we don't want to push it and it's hard to burp him without causing too much pain.

He will get a chest x-ray early tomorrow morning and if all looks good the chest tube will come out and most likely the IV's and best of all I will be able to hold my sweet little boy! Can't wait!

Everyone has said he is doing really well so hopefully we will have a shorter hospital stay- we will see. And hopefully I will be posting some pics of me holding him sometime tomorrow! Thank you so much for all of your prayers, we can't thank you enough!!

Bennett Is Still Moaning:(

Bennett took 2 ounces from the bottle pretty quickly and they changed his meds from morphine to something similar to Valium. Morphine just wasn't doing it for him. That seemed to help but now he is back to moaning so I'm going to feed him again and see if that helps. I won't be able to hold him until probably tomorrow when some of the tubes come out. Please pray that he can get some rest and that they can get his pain under control. Thank you!

Bennett Is Recovering!

I'm sitting here with Bennett and he's doing really good but he is moaning some so they are giving him more pain meds.
Now IV team is coming up to check on his IV's because he doesn't seem to stop moaning so the nurse said a vessel could be inflamed. Please pray that they can figure out what is causing his moaning because he shouldn't be in pain like that, his blood pressure is a little high too, due to pain.

They said I should be able to offer him a bottle tonight. Here's some pictures of my strong little boy before and after surgery...

Smiling at mommy right before going into surgery

Repaired heart, praise God and thankful for Dr. Spray!!


We are so thankful that Bennett made it through safely and so far, so good!

Just got word from the nurse that she wants me to try and feed him because she thinks he may be hungry. She also does not think the pain is from the IV (different nurse) and that he hasn't had adequate pain meds-there is a fine line between too much meds and respiratory rate so they can't give him too much because it can effect his breathing. So, sorry about the conflicting post-just finding all of this out.