Echo Ultrasound and Stablity....

Today was the day we have been waiting and dreading, for about 8 months now. We went to bed last night wondering if we were in the clear or if we were going to need to undergo another surgery (albeit much smaller surgery) again.

Rian and I had to go at this one alone which for me was much harder than I would like to admit. I got up early, got him ready, got me ready and off we went...ON TIME! I cried the first few minutes of the drive, in fear that I wouldn't hear exactly what I wanted to and also in fear that I would hear EXACTLY what I heard last time...not better, but not worse...so we are STABLE. Ugh. I know to anyone reading this blog are thinking...Drea, that is a HELL OF A LOT better than hearing "Well, he is going to need another surgery" but when you go through all of this, it also means...you are still not in the clear. It means you worry. ANYWHO, back onto the rest of his day...cause MAN he did SOO good.

8am: Mommy and Rian get in the car and off to the doctor we go, 35 minutes later we get there, and he is in the BEST mood, despite the fact that I have only fed him his FAVE snack at this particular time, which are freeze dried apple slices. So yummy, except daddy is not a fan.

838 am: We get to the cardiologists office and it's such a sense of worry and anxiety and even JOY because MAN we have made it this far and our little boy is growing GREAT. He towers over a lot of kids his age, he is smart as can be and he is SUPER busy. Busy with everything. We get in and the nurses bust out with "holy smokes Rian, you are soo big now, I am SURE you will get the all clear". I cringe yet can't help but smile from cheek to cheek.

920 am: This is where the waiting begins, these appointments have taken anywhere from 4-6 hours NO JOKE, each time we have come. so I am not surprised that it took this long to get back, but at 923 the nurse walks out and in we go. YAY! Rian of course still has no idea what is going on after all he hasn't been here since he was about 8 months old.



925 am: The nurse and I get Rian undressed he is starting to fuss a bit and I am TRYING my hardest to hold out on giving him his bottle (the first bottle in a couple days since we have switched over pretty much to just sippy cups...I just didn't want to frustrate him so I CAVED...bad mom...and took a bottle). She has to get his oxygen level, blood pressure, temp and height and then off we go. First thing I REALLY noticed, he hate hate HATE...did I mention he HATED when they hooked up the monitor to his big toe to get his oxygen level. He cried and screamed and kicked, man I was SURE this visit was going to suck royally. However after all was said and done he weighed in at 27lbs, and his oxygen level was at 100!!! We have never been at 100% with him, not even the day we took him home. OH and what that means is the oxygen level pumping through his veins, seeing as his first issue was that when he was born he had NO oxygen pumping through his veins and couldn't breathe on his own...which is how they track what to give him. He started out at 70% oxygen assistance at birth...that was rough and through the surgeries and such he was fine on his own and producing 98-99% oxygen on his own consistently.

There is an 'R' on this lollipop but you can't see it, this was the ONLY way to get him to lay down...yes...candy at 920am. Whoops.


Okay sorry, got off track...

10am: We finally get to the echo ultrasound room (this is where they check out his heart and see if there is noise (struggle of the blood flowing through his veins) and seeing if his valves, and "heart room's" (chambers) are pumping and flowing as they should. The ultrasound tech was AMAZING, and super good with Rian. We had on Monsters vs. Aliens and he almost turned it off and traded for Elmo as Rian was a bit whiny when he stuck on the ultrasound wire stickers, but I objected and good thing because Rian was absolutely SILENT the whole time. He was great. It was the first time in history that he didn't cry, move or act totally uncooperative the entire time, which meant it was also the SHORTEST ultrasound appointment we ever had.

This is where I realized he is a big boy...when he sat there soo calmly just waiting for everything to get done. Oh our big boy...he was SOO thrilled to have his bottle during this...I think that might have been why he agreed to be so quiet. Haha.


1038am: Rian is dismissed from the US Tech and we head down the hall to meet with the doctor and get the results from what she saw. This has always had us wait an ULTRA long time (especially since last time she didn't even know we were there, and that caused a TWO HOUR wait) but GASP, she showed up in record time, 7 minutes later. This is total time from when we walked in and Rian got his EKG...OH YEAH...about that.

So we get in the doctors office, he is still undressed and in his gown and about 2 minutes later the nurse walks in, sets him on the table, puts stickers on him for the EKG machine (he cried) then she hooked the wires onto the stickers (he cried) and then she had me give him his bottle and he was silent, 30 seconds later (probably actually two minutes) she was done. A COMPLETE EKG in less than two minutes. HOLY SMOKES. To get a good EKG on a baby they need to be SUPER still, not crying and completely calm. This process NORMALLY takes Rian a good 20 minutes. Not this time. Man, what a big grown up boy we have.

Note: I am NOT a bad mom, but drastic times call for drastic measures. There is powerade and water in his bottle (50/50) and hey it's better than Kool Aid. LOL. Don't judge me! Hehe.


Okay okay, then the doctor walks in after we take the stickers on and get him back off the little table in the office. The doctor was FLOORED by how Rian was soo calm and content. It was great. Dr. Guerrero can be blunt and kind of "rude" if you don't know how to take her but at this appointment she was soo optimistic, must have been because the holidays just passed! Hehe. She went over his Ultrasound and this is what she said, nearly word for word:

Rian is doing great, he is growing great, and his vitals look perfect. I didn't see what I was worried to see which was a negative result in the growth of his valves (meaning they now are struggling) and that is GREAT (she really said GREAT). Rian's valves have not grown (she must have seen the dissappointment on my face) and that is NOT a bad thing, and before I go on (she looked at me with a big grin) I want you to know mom (yes I am literally speaking as her right now) that he can wait a YEAR to come back! (I almost fell over).

Then she got a bit serious.

She stated there was no reason to have the surgery she thought we might have but that since we are waiting a whole year that we need to watch for TWO major things.

1. If he got tired quickly we needed to stop and put our hands on his chest and she said that we would ABSOLUTELY feel like his heart would jump out of his chest and not from being over worked, he could just wake up one day like that. UGh.

2. We needed to make sure that if he got sick we watched him SUPER close and feel for the same thing. Double Ugh.

Then she lightened the mood again (thank goodness).

I (again speaking as her) have no doubt that either of this issues will need to be of concern to you but I need to warn you of the seriousness and just know that I am ABSOLUTELY please with the way things turned out (she said this as she rubbed his little scar and I of course cried a bit).

And then she said EXACTLY what I did, yet didn't want to hear.

Rian's valves are no better, but also no worse and he seeems to be stable, I feel that they will grow as he grows but are just taking a bit longer than we would like. Not to worry though he will be fine, I am sure.

Quick pic of Dr. Guerrero and Rian, he was all smiles!


okay BACK TO ME speaking now.

Alright so we chatted some after this, I went over his ER doctor visit and hurnea scare, and she said it might be due to a multitude of things but that he felt normal to her, Yay.

So after all was said and done we got in and out in less than 3 hours and I STILL at 945pm shocked about that.

I got out of that office called Dad and told him all the news, he was also thrilled, then I got in the car and just couldnt help but stare at our little boy (okay it was actually stolen glances from the rearview mirror) all the way home (he slept. haha). I still cannot say that I am happy with the "not better not worse" comment but I am happy that for now our son is as healthy as he can be, and with STILL and SO FAR, only one surgery.

I won't really go into details because I can feel me getting emotional but basically today was the day I was hoping to be in the "safe" zone and I still feel in the "NOT safe" zone. I feel like we are still in watch mode, we are still having to worry and even though I am NOT in control AT ALL of his heart, I feel soo guilty that I have not done enough to get it to where it needs to be. This feeling is something that will be constant and will never go away, but for now I am SOO thankful that we have come this far and that he is by all counts (minus his scar and past) a NORMAL HEALTHY 16 month old TODDLER!

Thanks everyone (who may or may not have read the ENTIRE blog) for all your thoughts, and well wishes, it has helped us through every step of this little journey.

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We have had other stuff go on in the last couple days and those things are...Carina went to the zoo with her Nana as did Neya and we also had dinner with her Nana one night and it was SOO much fine. We helped her believe there was actually good AUTHENTIC Mexican food out here in AZ.

We also got butters a collar (after he was missing for a few days...read our last post. haha) and he LOVES it. The girls helped with the inscription. So cute.

Neya went on a field trip to the Zoo (haha, she is a ZOO oficionado now).

Carina has decided to sign up for Softball, that happens in February, I am soo excited for her on that one.

Rian was signed up for daycare today, we got the OFFICIAL go ahead from the doc and he starts tomorrow. YAY!

Here are some quick pics in relation to a couple of those last updates....enjoy!