Day 2 - Surgery

Today was the day, and Benny did wonderfully! Here's a little synopsis of our day:

Around 6:30am, a member from the transport team came to his room in the intermediate care unit (PIMCU) and escorted us down to the 2nd floor, which is where surgery takes place. We were put in the surgery holding area and waited there until about 7:45am when the nurse and the anesthesiologist came in and explained a little bit to us of what would be happening. The nurse gave Benjamin a sedative (which I cannot remember the name of at the moment) which would help him to relax and "get a little loopy". Within seconds of administering the drug, Benjamin was "flying high" so to speak. It was the funniest thing that Darin and I have ever witnessed! We made sure to capture a little video clip of his behavior just moments after he received his happy meds!

Once the laughing subsided, Darin and I said our goodbyes to our little man and the nurse carried him back to the operating room. We were told at that point it would be a good time to eat breakfast since the first update won't come until after they anesthesize him and do his echocardiogram. So, we grabbed some breakfast and took it up to the surgical waiting area, where we spent the rest of our morning. The staff was terriffic about frequently updating us on his progress, which we were most appreciative of. The began the surgery around 9am and about two and a half hours later they came out and said they were closing him up. Dr. Husain came out and told us about the procedure and how it all went and was extremely pleased with how Benjamin did. They did encounter quite a bit of scarring under the rib cage and had to spend some time trying to separate it from his heart, but after that, he did fantastic. They were able to put in quite a large valve (18 mm) which is terrific news!! This hopefully means that we have bought him some more time than expected until his next surgery.

He was transported up the Pediatric Intensive Care Unit (PICU) where he will be for the next couple of days. They have a great group of nurses and doctors in that unit, and Benjamin is being well looked after. It was decided that he would remain sedated today, the ultimate goal being to keep him comfortable. As you can see from the pictures, he is on a ventilator (which he should be coming off of tomorrow), and has an extensive amount of medications going into him! They have been trying to make him super comfortable all day, however, Benjamin is a mover and a shaker. He is burning through his pain meds so fast that he seems to only get about 20 minutes of relief before he starts moving again. He's already attempted to roll over a few times and constantly moves his arms and legs. He started scrunching his eyes like he was trying to cry and so they weren't sure if he was in pain or just uncomfortable. So, they are continuing to increase his pain medication as necessary. He also had a tube placed down into his stomach to relieve the excess fluid and gas that might be building up in there. That actually seemed to relax him a little bit (once it was in) so perhaps he was feeling gassy! As long as he's on a ventilator, the tube will remain in his stomach.

We will continue to keep you all updated as his recovery progresses. Tomorrow is going to be a big day for all of us. They will be taking him off the ventilator and allowing him to wake up and start moving. His pain meds will change to different ones and they will just monitor him and see how he does. Darin is staying the night with him again tonight and I will return tomorrow morning. Thank you all for your prayers. Benny is so blessed to have so many people who love him and continuously pray for him (we all are blessed by this). Stay tuned for more.....

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Benjamin's Admitted

Benjamin was admitted to Christus Santa Rosa Children's Hospital this afternoon. Overall, he did very well there today. Cried a little when they tried to take his vitals (he doesn't like that at all), but then he got to play for a bit in his room. They brought him some toys! They also have a playroom there that he can play in too so it makes it a little easier on us parents to entertain him! They took him around 5:30p to go put his IV in, and that took about 30 minutes, which gave Darin and I a chance to eat some dinner. He came back with a bubble on his hand. It's sad but actually a bit cute too! It doesn't seem to bother him too much either so that's good! Around 6:30p the lab people came by to take some blood from him. Needless to say he did NOT like that at all. And I, being the wonderful mom I am, had to act as bad guy and hold his legs down while daddy sat on the bed and watched TV. We got a great nurse though and she found his vein instantly! That was a first for us! They usually have to fish for his vein or redo it because they lose it. And to top it all off, the lab nurse came back about 45 minutes later to get a little more because they needed a new sample for blood typing or something. Luckily, that was just a finger poke!

Finally, around 7:45p, he got a sponge bath, and got his cute little gown on. Yes, they have little infant gowns, it's adorable! I'll try to remember to take a picture of it if I get the chance! After that, a little milk, and then a little rocking with mommy. He was out in about 5 minutes. Poor little guy was exhausted! I left the hospital a little after 9p, and Darin is staying the night with him. I'll be back at the hospital around 6a tomorrow morning to make sure I have some time to spend with him before they take him, which should be around 7am. They hope to start the surgery around 9a and finish up around lunch time. I will make sure to post an update as soon as I can! I will also update the facebook throughout the morning. Well, I better be off to bed now! Thank you all for your prayers and we hope to report great news tomorrow! Good night!

Finally an update!

Well, it's definitely been a little while since I updated the blog. Sorry! I'm just really bad about it. Anyways, I thought I would catch you all up on some stuff that has been going on.

The biggest news right now is that Benny's 2nd heart surgery is scheduled for Friday, February 5th. He will be admitted the day before and will spend the night there getting prepped for surgery. Darin and I are feeling a lot better about this surgery than his first one. After speaking with the surgeons, we know now that this surgery is not as intricate because it's not focusing on all the "rewiring" like it was last time. This time around is primarily just for replacement of his valve. The surgery time is also about 1/2 of what it was the first time around! What a blessing this was for us to learn. So while we dread the idea of surgery in general, we know that Benjamin is a tough kiddo, who is in great hands (the surgeons' and God's) and he will be back to himself in no time! He's only expected to be in the hospital for about 3-5 days, which is amazing to us. We were expecting it to be longer considering that his first time around he was in the hospital for 24 days, but that was also primarily due to his feeding. We are hoping that he doesn't regress in the progress he's made but we are prepared for anything. He has been working with a physical therapist and an education specialist and they both feel he is doing fantastic! The P/T really only comes once a month just to follow him, but she feels he would fine without her too. It'll be nice to have her around post-surgery though, just in case he does regress in certain areas.

Benjamin is doing great, as I mentioned before. At his last appointment (as of Monday) he is 16lbs, 15oz, so he's just about to hit 17 lbs! It's a milestone for him! He's been at 16 lbs for so long! He's obviously nowhere on the growth chart but he's creating his own line below the growth chart! He's always been unique. He is walking along everything and anything that will support him, and has even taken a couple steps without holding onto anything. He's definitely trying! He is just a happy little boy who just loves to smile and play. He's also very attached to Daddy, but I'm working on adjusting that a bit! Tonight, he actually wanted me for bedtime and not Daddy. Highly unusual but it made my night nonetheless!

The girls are also doing well. Abi is involved in Girl Scouts and is about halfway through her first cookie sale! She's loved the idea of selling things and collecting money (too bad she doesn't get to keep the money!). She is excited though that the money they earn is going towards a trip to the zoo! She's earning all kinds of patches! Emily is jealous that she doesn't get to be a part of Girl Scouts yet, but is looking forward to the day when she can (which is still 2 years away). The girls want to get involved in Soccer this spring so hopefully we will find a league. Abi wants to play with one of the girls from her troop so we're going to try and work that out! Abi also took her first trip away from home, without her parents! She went with her friend Brianna (from Girl Scouts) and her family to an indoor waterpark in Grapevine, TX, which is about 4-5 hours from here. It was called Great Wolf Lodge, and the website looked fantastic! She had so much fun and I was happy to hear that she did a great job being on her own! My baby is growing up!!

Darin and I are busy as usual. Darin is doing well at work. It's hard to believe he's coming up on his 1 year anniversary in April! We can't believe we've been here that long. Back in November, when hours were down at work, Darin picked up a second job at a brake shop, working on Saturdays. It was great as it helped out tremendously with Christmas, and now it's helping us in other areas! Poor guy is exhausted, and we are blessed by his commitment to his family. He's hoping he can take the summer off from his job though, as we are expecting a new baby in August!

It was a big shock to us, as we definitely weren't planning on having another, but the Lord has his own plans! We are still very excited about our new arrival and look forward to making our family a little bigger! I had an ultrasound done last week with a perinatal specialist, to check for any problems with this baby, due to our history with Benjamin. Obviously, this early on, they can't see major organ development but they check other things, such as the fat on the back of the baby's neck. I guess if there's too much there, it can indicate that there is a problem. But that looked normal. I also had blood work done to check for any indicators that there is a problem, and received a phone call a few days ago that everything came back great! So, praise God, it looks like this baby will be healthy and have no major complications. I'm following up with the specialist at the beginning of March, since they'll be able to see things (like the heart and the sex) a lot better to determine if this are developing normally. But as of now, things appear to be great!

Well, for now I guess that's it! We will keep you posted with Benny's surgery, and I'll be sure to post picture of his progress as well as the pregnancy! Thank you all for your thoughts and prayers! We love all of you!

Podiatrist visit

Benjamin saw Dr. Goad, the podiatrist, on Friday for the first time! This appointment was so enlightening for me because it's nice to know now what we possibly will have to deal with in the future. He took x-rays of his feet and both of Benjamin's feet have all 5 toe bones, which was a surprise to the doctor. Most cases he sees only have four of the five. As you can see from the picture, Benny was deep in thought about this. I was told that Benjamin will most likely have to have surgery. It won't be cosmetic, as he doesn't do surgery for strictly cosmetic purposes. His will be more for functionality of his feet. Right now, when Benjamin puts pressure on his feet, his big toe sort of turns out and curls, almost resembling a claw. He does this to provide the balance he needs because he doesn't have that extra support from the middle toes. It's not a big problem now, but eventually, if not corrected, it could be. Not only that, but with time, his toes will spread apart even further. The surgery will be to close the cleft a bit so that he can wear normal shoes. Hopefully doing this will help his big toe to straighten out as well.

At this point Dr. Goad will just continue to follow him and give him some time to grow. We are going to see him again in 3 months. Only time will tell what exactly we will have to do. It could take more than one surgery to help him, or it could take some time in casts, or even something else. We don't know for sure yet. We just know that he will need something, and surgery is most likely in the cards.

It's nice to know. While I feel so bad for Benny to have to endure yet another surgery, I know that it will be to help him. Though this kind of surgery is not as serious as heart surgery, no surgery is without risk. I know he is a strong little boy, and that any obstacles he comes to will only make him stronger, but as a mother I can't help but ache for him...sometimes it just feels as though it's going to be one thing after another for the rest of his life. I know God will handle it all; He has thus far and will continue to do so. So I just have to pray for the strength and courage (and energy!) to be the mom that he needs, and that the girls need too! I was promised that I will never have more than I can handle...and that reassures me that I can handle this!

Thursday update 9/10

Benny had a good old-fashioned doctor appointment today so I just wanted to give you all a little update on his stats! He has finally passed the 15lb. mark!! He weighed in at 15lb, 3 oz! Woohoo! He is 26 1/4" long. He is obviously still way below the average but he is progressing well for him. He is growing and he is proportionate to his own stats. He's doing very well. He is, as we mentioned before, a couple months behind developmentally but he's working very hard!! He is pulling himself up on things now and crawling like a champ. We're still working on
his solid foods. He can handle the baby food, but he still has a bit of trouble with normal solid food. He'll get it though! These are just a few pictures of him today...he was all dressed up for his appointment, and looking oh so cute if I say so myself!







Emily was supposed to be just a spectator at the appointment, but I decided to have her get her flu shot since we were already there! She was a champ, and while a few tears flowed, she did great! We celebrated with a happy meal from McDonald's! Abi's is scheduled for tomorrow, after school of course!

It's a good thing we did grab some lunch before going home because when we arrived home, we discoverd while attempting to open our garage door, that our power had gone out...thanks to a fabulous thunderstorm!! Our front and backyard was flooded!! There was a river running through our front yard, and that's not an exageration! It was nice to get some rain though, we desperately needed it! And, both Benny and Emi took great naps!!

I also learned today that Teresa, my sister, was admitted to the hospital and is being induced. So hopefully I will have a new niece within the next 24 hours!! We're all awaiting and anticipating her arrival! I will keep you posted if I hear anything, or receive any pictures!!

Tonight I have a parent orientation meeting at Abi's school, immediately followed by a PTA meeting. Yes, I have become part of the PTA! I figure I should be a responsible parent and participate :)

Overall, today was a good day!

Friday Night Campout!!

Friday night Darin and the girls camped out in the backyard! They were so excited! The idea of sleeping in tents thrills them! Unfortunately, I had to stay inside the house and sleep in my bed because we couldn't leave Benny in his crib alone now could we?! But, nonetheless, the kids had a great time! We roasted weenies for dinner (which as you can see, got burnt to a crisp!) but they were yummy anyways! Besides, it wouldn't be camping if we didn't burn some of the food. For dessert, we had to have smores...a camping favorite! I'm proud to say that the girls definitely showed self control and both of them only had one, and said they were full. Of course, they did ask for an extra marshmallow and a piece of chocolate!

We wrapped up the smores around 9pm and it was off to the tent with all of them! They took a couple games and some cards, along with a lamp so they could see! They managed to stay awake for quite a while, but eventually, during bedtime stories (they all took turns telling one), they passed out...

The next morning, they woke with happy faces...all except for Darin, who was stiff and sore (he's getting old!). They must have woke a bit early because Darin was inside when Benjamin woke up and he took care of Benny and the girls while I got to sleep in! Win for me! So, anyways, just wanted to share some of our fun times with you all, as well as some pictures. Last night we did movie night. We watched Escape to Witch Mountain which Emily seemed to like, and I think Abi did, at least up until she fell asleep! I think the whole "waking up early in the morning for school" is starting to catch up with her! But, she still gets excited about going everyday and can't wait for the weekend to be over! We told her that when she's older that mindset might change :)

On a side note, I have a facebook account that I upload many of our photos to, so if you have an account, send me a friend request! Then you can see more photos!

Have a great Labor Day weekend and be safe!!