Pneumonia Strikes Again

Owen came down with a fever this evening of around 103.  Local hospital says it looks like pneumonia. So an overnight stay is in order. The local Dr contacted his heart surgerons office which suggested he be admitted and put on a strong IV antibiotic to kick whatever he's got going on. Looks like a long night ahead :(

Follow-Up Appointment

Owen had his follow up appointment and things look good. The doctor said that his heart sounds awesome, there is no murmur to be heard. He is able to stop taking his lasiks and should return in 2 months for an echo.  If that looks good then he will be seen a year from then.

Surgery Pics: Day 1

Family picture before heading into surgery

Grandma Beth and Owen before heading into surgery

Poor Owen right out of surgery

Shortly after having his breathing tube taken out

We're Home!

Owen had his discharge echo and ecg done yesterday morning and they both looked good. His remaining IV was removed along with his pacing wires.

He finally ate a decent amount of food too. He hadn't had much of an appetite but last night he ate almost half of his hamburger, about 10 french fries, a pudding and some applesauce!

We took him for a wagon ride in the afternoon, which he did not enjoy too much.

We got things together at the Ronald McDonald House this morning and picked up our precious little boy around 11:00 this morning and headed home. I am SO happy to be home, as is Owen. I'm hoping to get some more pictures posted later, once we are settled in.

Thank you all for your prayers, thoughts, and support!!

Goodbye Oxygen

Owen has offically said goodbye to the blow-by oxygen and is maintaining O2 stats of about 98. Prior to surgery they were 90 to 92! I'm SO happy to have that out of the way. Chest xrays have greatly improved also. He put out a lot of fluid yesterday while being on lasiks and sounds a ton better today.
The original plan was to possibly go home tomorrow but Tuesday is looking more realistic since he is still on some IV antibiotics to help clear up anything in the lungs.
I feel so blessed to have everything going this smoothly!

P.s. sorry for the bad pictures, they're from my phone.

Our Little Peanut

It feels so good to hold him after all of this :)

Things are Looking Good

It's been two days since Owen's surgery and things are continuing to go well.  The plan for today is to have the drain tube in his chest removed along with his pacing wires, as we have not needed them at all.
The main focus though is to work on getting his lungs cleared up a bit. He has got a little build up of fluid/mucous in each lung which is causing his O2 stats to drop when they remove the oxygen. So clapping on his back and chest will be today's activity. The doctor wasn't too concerned though, said this is really common after surgery.
Currently they have him on oxygen set at 100% blow-by which leads him to have O2 stats of about 97 to 100. But when he moves and isn't getting that, his levels seem to drop into the mid 80s. So that is our main hurdle in my opinon.
After Owen being on oxygen for the first 2 months of his life, I'm really focusing on that. I really don't want him to be stuck here just because of the O2 levels.
His pain is under control. After surgery he was on a constant drip of Fetanoyl (sp?). That was discontinued yesterday morning and is now on scheduled doses of tylenol and a little bit of morphine when needed.
On another note, his nurse said we should be able to take him for a walk in a wagon today!

Three More Down

Last night went pretty well his nurse said. He was a little fussy and pretty restless though. He got moved into a crib this morning so I think he is a little more comfortable.
Owen is currently having the two IV lines in his groin removed along with his cath.  He isn't too happy about it; if only he knew this was a good thing. His nurse said after these lines are out, we should be able to hold him :) I'm so excited!

One Down

Owen's breathing tube was taken out at about 6:00 this evening and things are going well. They still have oxygen blowing around his face and his stats are about 95 to 97, he usually maintains a level of about 92.
He is still pretty groggy and fussy, but is doing really well. The plan is to try some sugar water later tonight. Tomorrow the IV in his groin should be removed, along with his cath, and hopefully we will be able to hold him.

Surgery Is Done

Owen is in the ICU and is doing great! We're hoping to have the breathing tube out early this evening and then hopefully hold him! I feel so blessed that everything has gone well so far. 

Surgery Update 3

Owen's surgery went smoothly! The docs are just working on closing him up now and we should be able to see him in about an hour. I am so happy and so glad the surgery is over, now I just hope the recovery goes just as smoothly. Thank you all for your support!

Surgery Update 2

Everything went smoothly with anesthesia and the incision was made at 9:20 a.m. He should be placed on bypass anytime now and then we should be able to talk with the doctor around lunch time.

First Surgery Update

We arrived at the hospital this morning at 6:00 am. Owen was taken back to the O.R. at about 7:30 and we should should be notified at about 9 that surgery has begun. This morning was rough, but with all our family here, I'm hanging in. Owen was a happy camper and had no worries. I can't wait to see him!

And So It Begins

We are finally settled into our hotel room for the night. Tomorrow is filled with pre-op appointments including labs, xrays, echos and more...fun, right?

Owen is still awake and doesn't seem like he will be sleeping anytime soon. I'm glad he doesn't understand what will be happening in the next couple days.

I will be updating you all on how things are coming along tomorrow and Thursday, the day of the surgery.

Prayers are welcome!

Heart Surgery

Owen will be having open-heart surgery to repair his ASD. The surgery will take place on the 25th of August at Mayo in Rochester, MN. I am glad he will be having the surgery at one of the top facilities in the country, but that doesn't really make things better. Lately I have really been on edge and really emotional and questioning if I can do this or not...just thinking about all the what ifs. I'm crying already just typing this. Any prayers or advice are welcome!

Pearly Whites

Remember these pearly whites? Yeah, not so cute anymore.

They are now Owen's personal weapon. His multi-offender blades. He actually drew blood yesterday. It's his new way to express his anger, I guess. Whenever he gets frustrated or angry, the teeth come out. And I always seem to be his prey. Anybody have any biting issues?

I have tried teaching him that biting is not OK by giving him a stern NO but that only seems to frustrate him more. And that only causes him to attack me more, in the form of trying to rip my hair out. Anybody have any suggestions??

Just A Small Town Boy

Fun In The Sun

Pull To Stand

Owen has begun to pull to stand. Mostly just in his crib...for now :)

And he couldn't be happier.

Just Pictures

Oh So Tiny

So Owen saw the E.N.T. Doctor on Wednesday, who didn't have too many options for us. He started out asking us if Owen snores, which yes he does, and if he drinks his bottle laying down, which is another yes. (We're still working on getting him to tip the bottle up for more milk.)

So he took a look in his ear and really couldn't see much of anything--- his ears are just too tiny. So we went over his last hearing test which he said was a little reduced but not horrible.

After discussing that and the fact that we have never noticed any kind of hearing issue at home, we went over our options. These were (1) have Owen actually be put under in the operating room so the Dr could try to get a better look and see if he would benefit from tubes (2) have the ear opened up from behind and have any fluid drained or (3) just keep an eye on things.

The doctor said that we could do option 1 but it would pretty much be pointless. He said that even if Owen would benefit from tubes, his ears are too tiny to even put them in, they wouldn't fit. He didn't really think option 2 would be worth all the trouble, which I agree. He said that the cons of actually having to do the whole procedure outweighs the benefits of it. So that left us with just keeping an eye on things. We are hoping that as Owen grows so do his ear canals and things will kind of resolve on their own.

He also told us that Owen might benefit from having his tonsils and adenoids taken out later. He said that at this point he is not saying that he will have to have them out but wanted to let us know that usually it is very beneficial for kids with Ds, considering the smaller upper respiratory areas. This would get rid of extra obstructions in the airway and help with snoring and such.

Wordless Wednesday

3:21 Pure Bliss

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Conductive Hearing Loss

So Owen has gone to the audiologist three times since the end of January and has repeatedly failed each hearing test. The good new is that they think it is only conductive hearing loss, caused by fluid in the ear and/or ear wax, and not something more serious.

Owen had a cold for the first test along with an unknown ear infection for the second one. We just went this past week for another follow-up and got better results but still not where we want them. He responded to all the speech that was played for him but when it came to sounds that make up speech his response was reduced. Looking in his ear the doc said that there was a lot of wax, only a slit of an opening to hear through, and was not able to tell if he had an ear infection. He did say that the results of the test suggest fluid is present, just as before.

So we will be seeing an E.N.T. doctor on the 6th to discuss any options for Owen. I'm really hoping that something good will come of this appointment, whether it be tubes or something else.

Has anybody else had a situation similar? I know it is very common for kids with Ds to retain more fluid in their ears.

And the fish was this big...

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My Little Rock