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!

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!

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:

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!!

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.

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!!