Sunday, November 30, 2008

Amazing

It's been almost an entire month since Dylan's open heart surgery. And I would guess that he has spent 99% of this time on his back. Because the sternum takes about a month to fuse back together, we have been instructed to be very cautious about how we pick Dylan up as well as how we hold him and what we allow (more like what we don't allow, namely um...anything) him to do. I have been told that because of this, we should expect that Dylan will most likely not make any progress this month. That he will regress. We were told to assume set backs.

Knowing this likely regression, I decided to try him in his Bumbo chair anyway. Just out of curiosity.

Prior to his surgery, he wasn't able to hold his head up very well due to low muscle tone. I would try him in the Bumbo chair, but didn't dare remove my hand from the back of his head.

So anyway...I put him in the Bumbo chair yesterday and voila! Check him out!

He was able to hold his head up better than he had prior to the surgery! The only times that his head flopped back, was when his lovable big sister Cassidy, kissed him a little too forcefully. Kind of like this:


Another BIG milestone for Dylan? Eating solids! Dylan's Early Intervention nurse suggested that we give it a try. If nothing else, just so that he could get used to the feeling of a spoon in his mouth. So, I've been mixing up mostly breast milk with a tiny bit of rice cereal and he's done very well with it!

You know...now that I think of it...I do not know why I've referred to Dylan as the "Surprise Master". Maybe he is not full of surprises after all. Maybe I just need to give the guy the benefit of the doubt. Every day, he is showing me that he can do all of these things. Really. I should not be surprised that he can do whatever he puts his mind to.

Friday, November 28, 2008

T-day

Ah, Thanksgiving.

We had a very casual and mellow celebration this year, as we are still suppose to keep Dylan on the down low for a little while longer.

Dave made the entire meal as is typical in this family, as I am totally incompetent in the kitchen. Our plates were full of turkey, gravy, stuffing, squash, mashed potatoes, cranberry sauce (my personal favorite), grapes and macaroni and cheese.

Yeah, those last 2 items weren't originally part of the menu, but after fixing Miss. Cassidy a nice plate of Thanksgiving deliciousness, an ear piercing 2 year old tantrum followed... thus a plate full of grapes and mac and cheese was added.

Here is Cassidy showing off her grape.



Dylan was a trooper as usual, watching and waiting patiently for us to finish our dinner.



We really did have a nice Thanksgiving. After all, Dave and I have much to be thankful for.

I hope you all had a nice day was well.

Tuesday, November 25, 2008

Stories

Dylan has become quite animated with his story telling lately. Here he is telling me something of great importance yesterday.

Oh how I wish I knew what this little boy really has to say! video

Monday, November 24, 2008

Getting there

While Mama walks around the house like a total zombie, Dylan has a great ol' time for himself! I'm pretty sure he is getting a kick out of all of this eating and not sleeping stuff.

See what I mean?

Nah, actually it's not that bad. We've gone from waking 5 times at night to usually 3 or 4. We are making progress. I can feel it!

Thank you all so much for your comments. I really appreciate them.

Saturday, November 22, 2008

five times...help!

That is the number of times that The Sleepless Wonder woke up last night to eat. I fed him 5 times between 7:30pm and 6:30am. And this was after feeding him every 2-3 hours during the day as well. This is not normal...is it?!

I know that he is trying to catch up because of the weight that he lost during surgery, but yikes. I'm exhausted. Like, really exhausted.

I was planning on waiting a month or so before introducing solid food (rice cereal), but now I'm wondering if I should do it sooner. Is breastmilk just not cutting it? But then again, I'm not sure if I am suppose to wait longer...like until he can hold up his head better, or until his body seems better adjusted from the surgery. And does the fact that he has Down syndrome come in to play when introducing solids?

I'm at a loss here people.

If anyone has any opinions or suggestions, I would LOVE to hear them.

Thank you! : )

Thursday, November 20, 2008

Rare Sighting

Shhh...look who finally cracked!


Naturally, he fell asleep in the swing, which is in the middle of the living room, with his 2 year old sister going wild and Finding Nemo playing in the background.

Eh, I'll take whatever I can get.

Wednesday, November 19, 2008

Well, I'm tired. Why isn't he?

I have to admit that I wasn't too thrilled about having to take Dylan to the pediatrician's office yesterday for a 4 month check up or to his cardiology appointment today for that matter. Guess who was pretty happy about it, though? Yep, the Sleepless Wonder.

See, I have been slightly exhausted because Dylan has reverted back to his newborn baby's feeding schedule, ie: feeding every 2-3 hours...even at night. I have heard that this is pretty common after surgery, especially because Dylan has lost almost 2 lbs and is trying to make up for lost time. Good for Dylan. Not so good for Mama.

Not to mention that he has lost all interest in napping during the day.

So, yesterday Dylan got his second Synagis injection as well as one 4 month vaccination. He did well, but I just felt so badly for him having to go through more pokes and prods so soon after his surgery.

We also got good reports at his cardiology appointment today. The doctor said that his incision looks well, his heart sounded good and that we would be able to stop his Lasix in one month. I'm not sure if I mentioned this before, but there is still a small hole in Dylan's heart. We were told that because it only measures less than 2 mm, it should not be a problem. The cardiologist said that it may even close on it's own in the next few months. We'll go back in 3 months to see.

If you can, would you please send us a quick 'hole closing' vibe... just to be on the safe side?

Thank you : )

Monday, November 17, 2008

A small glimpse as to what it was like...

What is it like to have your baby go through open heart surgery? Well, for one thing, it sure as heck isn't easy. But you know what? Keeping the big picture in mind, we really are so lucky. We were taught a lesson about true love. Throughout this experience, I learned just how much I love my son. I can't explain it. It's like nothing else mattered to me in this life. The whole thing was just overwhelming, really. The love.

Here are some moments from the past couple of weeks that I do not think I will ever forget. Some are wonderful. Some heartbreaking. But they all stand out.

Day 1 of recovery.
The nurse told me that at this time, I believe it was 12 IVs pumping into my son's body at once. The vent next to his bed is breathing for him.

Day 4 of recovery.
The picture may not seem like it, but this was a big day for Dylan. He started to breathe against the vent when we talked to him. He was trying to open his eyes. They told us to come back in a couple of hours as they were going to try to take him off the vent.

This is what D looked like a couple of hours later. I still find this truly amazing. Just amazing.

Day 5.
On the road to being Dylan again. I thought he looked so great here.

Day 6.
I think Dylan was feeling the vibe of this day. Not only did he have to go back into the OR for another surgery, but he also must have felt his Momma's stress. See, his eyes were open this day, but he could not keep them together. They kept crossing and just looked really different to me. When I asked the doctor about this, I was told that sometimes a baby may suffer from nerve damage or even a stroke during surgery. He said that they would contact neurology to come and take a look. Yep, stress indeed.
Later on day 6.
This was a difficult moment for Dave and me. Just when it seemed like our little guy was on the mend, he came back from his hernia operation looking like this. It absolutely broke our hearts.Day 7.
He's back! I remember walking into his room in the morning and he just looked at me with this face. I felt such joy and relief. His eyes were together and were focusing. Yeah!


Day 8.
No tubes. No wires. He's free!

Day 9.

I dressed him in real clothes because we were about to be discharged! My brave little man and I were going home.

Sunday, November 16, 2008

Back in Business

Thanks to my incredibly intelligent, amazingly athletic, and stunningly handsome brother-in-law, Brian, our computer is back in business. Brian, you are the best. And we owe you. Again.

Guess who else is back in business? Yep. My little hero, Dylan.

There is so much to talk about, but because I promised some pictures, I think I will start with those tonight.

I have to say this, though.

Any little human being who can go from this:

To this...

...in a span of one week, which involved an 8 hour long open heart surgery to repair two major heart defects, and later on in the week one surprise hernia operation, is by far my biggest hero.
Dylan rocks.
Hands down.

Wednesday, November 12, 2008

Real quick...

I'm typing this on the 8th floor of the hospital. I've discovered a children's room up here with all sorts of toys, games and yes - computers!

I just finished feeding Mr. Dylan and guess what? I'm staying overnight with him tonight and bringing him home with me tomorrow!!!

Ah, I am so incredibly beyond excited to have him back!

Once my computer is up and running again, I can't wait to show you all some really nice pictures from the past couple of days. He is definitely back to his old self. Well, not exactly I suppose. Yes, it is the same ol' Dylan Ross but with a new and improved heart.

Thank you all for your incredible support. Much love to you all.

Monday, November 10, 2008

Little Set Back

Well...our Miracle Boy had a few set backs today.

During Dylan's heart surgery on Tuesday, a stomach catheter was inserted because he had so much fluid build up. When that catheter was removed this morning, there was a complication and Dylan had an Omentum Hernia. An Omentum Hernia is basically a protrusion of abdominal fat through an opening in the muscle wall of the abdomen.

Dylan was taken to surgery this afternoon to have this repaired. Ugh. Sitting back in that pre-op room was not at all what I wanted to be doing. Poor little Dylan...being poked and prodded all over again.

He did well with the procedure and is now recovering...again. He was put on a ventilator during the surgery, but has since come off of it. He is still on narcotics and is pretty well sedated. When we left the hospital this evening, he was doing well. Sleepy and not too thrilled with his mom and dad, but otherwise ok.

On the bright side, it was not an entire day of set backs, though. One of his chest tubes was taken out as well as his Foley Catheter. His A-line was removed and he can move his arms about freely. Yeah! Hopefully tomorrow the rest of his chest tubes will be removed. Then, I will be able to hold him. Finally.

I am writing this blog entry in an email to my sister Kim. Our computer is on the fritz and Dave's laptop is the slowest thing on earth. Not to mention, it won't let me in my own blog. Sigh.

Thank you again for your thoughts and prayers. I know that Dylan can feel them.

Saturday, November 8, 2008

Hello

Whew, we are 4 days post surgery. I apologize for not updating sooner, however our computer decided to break down at just the wrong time. I am writing this from a hotel across the street from the D-Man himself.

Here is a quick rundown of what's been going on with our Surprise Master.

His chest was closed on Wednesday night and he did very well with it. No problems or issues.

On Thursday, he was taken off a major heart medication and was also taken off the medication that was paralyzing his body. Apparently that night, he was trying to move a bit more than they had wanted him to, so he was sedated. Everything was still going along just fine, though.

Yesterday, his heart lines were taken out. These were attached to his heart and were there for monitoring purposes. He had a little bit of bleeding from that, but that has since stopped and he is recovering from that very well.

We just left the hospital and it's about 2pm. When we went in to his room this afternoon, he heard our voices and started trying to open his eyes! He was moving his body and began fighting the vent a bit. As I'm sitting here typing this, he is getting his ventilator removed! Yeah!! We will go back in a few minutes to see how he is doing with that. We are hoping like heck that he does well, so that it does not need to be reinserted. C'mon Dylan!! You can do it, Buddy!

It seems like every day we go into his room, we notice that there are fewer and fewer tubes, wires, IVs, machines etc. It is so exciting to see Dylan's amazing progression.

This has been quite a week. So many emotions...

We simply could not be any more proud of our son if we tried. He is a brave little fighter, we now know that for sure.

Thank you all so much for your thoughts and prayers. They have certainly gotten me through some tough moments.

Lots and lots of love,
Laurie

Wednesday, November 5, 2008

Update

The Master of Surprises. That's Dylan for you.

We are back home for the night. It's been an extremely long couple of days. Here's a quick run down of what happened.

Dylan's surgery began at about 8:30a.m yesterday. At around 11a.m, the Physician's Assistant came to update us as to how the surgery was progressing. She told us that the surgery was going to be a bit more complicated than they had anticipated. They had found an additional defect called an A.P Window which they did not know about until the surgery had begun. We later found out that they had never before seen an A.P window with an AV canal defect before. Never ever. Ever.

We were updated again at around 2pm and were told that the A.P Window had been closed and they were now going to begin the AV canal defect repair. She told us that because Dylan had been on the heart/lung bypass machine for so long, as well as having to be put on cardiac arrest, they were concerned that his recovery was going to be quite difficult. We were told that he was going to be sick for longer than they had originally anticipated.

At around 3:45pm we were told that the AV canal had been repaired and that he was now off the heart/lung bypass machine. She said that there was still a bit that needed to be done before we would be able to see him.

The surgeon, a genius to be sure, but yet a man of few words, came out to talk to us a couple of hours later and told us that Dylan was doing "Ok" but that his lungs were "not good".

We sat with that information for a couple more hours until the cardiologist came to talk to us. She was much more optimisitc. She was exactly what we needed. We were then able to see Dylan. It was amazing...he is amazing.

Dylan remained stable last night and continues doing well today. He is having surgery done this evening to close his chest. They told us that this may set him back a bit as he will have to readjust. But he's expected to do well with it.

We left the hospital this afternoon so that we could come home to see Cassidy. By the time we left, the the doctors and nurses were just amazed by Dylan's progress. They had originally planned on closing his chest on Friday, but are doing it today because he's doing so well. They have already begun cutting back on his 3 heart medications and believe that there is every reason to be hopeful that Dylan will be taken off the ventilator by Friday.

My head definitely hurts, but I am telling you, my heart is so full of love for this kid. He has absolutely, positively, 100% blown me away. He is so courageous and so strong. As I was leaving today, the Physician's Assistant said, "Don't worry about Dylan. He's leading the way and I'm pretty sure he knows exactly what he's doing".

I took this picture of him today because I find comfort in it. Throughout this whole ordeal, I was faced with the fact that I may not see my baby again. It's funny...before the surgery I thought that I would be afraid to see him in this condition, but it was not scary. It was absolutely amazing and beautiful.

Dylan is truly a miracle.


Thank you all so much for your thoughts and prayers. We'd love it if you could keep them coming...for a few more days if you can : )

Monday, November 3, 2008

It's Time

Surgery time.
Here is a picture of Dylan's chest tonight - pre-surgery. We had just bathed him in that special antibacterial soap: Hibi-clense.

My mom will be here at the house with Cassidy and will update Dylan's blog when she can.

Take good care,
Laurie and Dylan

Sunday, November 2, 2008

44 hours

I'm nervous. I'm anxious. Relieved. Restless.

I have no fingernails left to bite.

Dylan's heart surgery is on Tuesday... 44 hours to be exact. Four months of waiting has come down to hours now. I'm so tired, but I can't rest.

I wish there was some way for me to tell Dylan what is about to happen to him, but yet I know it's better that he does not know. He can not anticipate it. He won't go into this afraid.

I've been trying to focus on the moments after surgery. The time when I can see my baby being wheeled out of the operating room.

At night when I'm trying to go to sleep, sometimes images of the actual surgery creep into my mind. I don't want to think of that, but I'm afraid. For Dylan. For me. For my family.

But I am also hopeful. For we have every reason to be. Dylan is going into this surgery strong and healthy. Over the past four months, he has proven time and time again that he is a fighter. I have so much faith in my son.

Yes, we are certainly hopeful. Nervous, anxious, relieved and restless. But above all, hopeful.