burnt out and pissed off.

8:26 PM Posted In , 15 Comments »
*NOTE* please forgive me for the lack of spacing...I have yet to figure out why this happens and it is SO annoying!!
Alright, first of all...WARNING. Not for the faint of heart: Helpless baby pictures ahead!
So today was a long, long, LONG day.
I was telling mom at 2pm that it felt like 7pm. Sheesh.
For the most part, things went well. Gabby was taken back around 7am and I assume they didn't start surgery until 8 or shortly after. By 12:30 Dr. Azakie was done with the operation so I was grateful for the relatively speedy procedure.
I don't know what came over me but I was very calm all day. Anxious...yes, but so much less than I thought I'd be. It's amazing how one can handle themselves during stressful situations. I even saw Gabby for the first time as they rolled her down the hallway and I wasn't shocked or even scared. I was really worried about how I would react at the first sight of her but it was fine...she looked fine and all was good.
Soon enough I was able to go back and see my girl. Right away she was being her feisty self, kicking and pulling at everything she could get her hands on. The nurse had to restrain her arms because every time they suction out her breathing tube she has an absolute fit. She showed the nurses just how strong she really is and this is when they made the executive decision to tie her little hands back.
After being in the room with her for about an hour, it was apparent that she was uncomfortable. She was administered Morphine and Dopamine and neither of these things seemed to make an impact on her pain. The nurse then informed me of something I had never heard. She told me babies, kids, and adults with Down syndrome are not relieved by pain madeication the same way "typical" folks are. She said she wasn't sure about the physiology behind that, but that is what she knew. So they gave Gabs a little more morphine and it still didn't seem to make a difference. It was pretty sad to watch her cry with no voice. Poor, sweet princess.
She seems to be doing okay now. She was given a suppository of Tylenol because she had a slightly elevated temperature and they wanted to catch it before it got any higher. Fine with me. I loved our nurse but about an hour ago was the first shift change. Here comes the "pissed off" segment of our show.
Our first nurse was sweet as can be. She talked to Gabby very sweetly and was extremely gentle which is how you should expect a nurse to treat an infant just out of heart surgery. The new nurse had different plans, apparently.
After nurse one gave her the report, she promptly ignored everything she was told and decided to re-do everything the first nurse had set up. There was absolutely no reason for this. I could just tell within the first two minutes of her being there that she had a stick up her ass. Gabby was EXTREMELY irritated with all of this and rightfully so. I was furious and had to walk out so I could sob in the bathroom.
I know I should have spoken up right then and there but at that point she had called in all of the nurses and none of them introduced themselves or said anything at all to me. They all seemed inconvenienced and I felt helpless.
By the time I returned (with both red eyes and face) I saw a slight change in attitude of our new nurse. I am sure she could tell I had been crying and she started speaking to me in a softer tone, asking me if I had a "long day." Yeah....you think?
So for now, I am giving her a break and hoping she was just cranky at the start of her shift. I am actually away from Gabby right now, sitting in the waiting room.
Now here are the pics you've been waiting for. She had not yet woken up by this point...


This picture shows her breathing tube, feeding tube, incision site, and heart catheters. The weird patches on her forehead are to measure oxygen saturation in the brain or something like that.


These tubes are draining her chest. You can tell the left side is much bloodier than the right.


And this is a pic of her poor little arm. Poor girl :( They must have tried to do the IV on the other side first because I see some bruises and blood over there. I am sure it was quite the ordeal.


That's all I have to report for now. The nurses tell me she is doing well. The fever is totally normal and they're watching it. They are slowly going to lower her oxygen through the night and if she tolerates it well, they will remove her tube in the morning. I am excited for that. I know Gabby hates it and I hate seeing her so mad.

I can tell she will be my spunky little girl in no time.
She is already demonstrating that it's not far off!
Thanks again for all of the thoughts and prayers. We SO appreciate them!!



she's fixed!

12:45 PM Posted In , 16 Comments »

She's out of surgery and I spoke with the surgeon. He says she did great and everything has been repaired!
A couple of nurses just rolled her by me on their way to ICU so I got to see her for a split second and she looked much better than I had anticipated. Thank GOD!
I should be seeing her soon...can't wait!
I'll update more later!

And she's off!

8:33 AM Posted In , 13 Comments »
My baby is in the operating room. We're hoping to hear something by noon. The transition to the O.R went smoothly. They gave her some nasty medicine (which I'm told is similar to valium and xanax) that was supposed to make her sleepy. Yeah, that didn't happen. I sat with her and rocked with her hoping she would eventually fall asleep but ten minutes after the meds were administered they took her from me :( . She went willingly. I think she was feeling a little drunk. She just kept nodding her head like she was dancing.

I watched her as they took her away and she was just looking around, not crying, so I was pleased.

Immediately after, I snuck into the family shower (because I SO needed it)!

My mom is here with me now and we are just waiting...

someone I know is kinda feisty!

10:37 PM Posted In , 15 Comments »
Well, here I sit in a crammed hospital room with a baby on my chest, who apparently HATES being touched in her sleep. It's going to be a long night indeed.

Today went well for the most part. We got admitted right on time but unfortunately, there were no beds available so we went off on a wild goose chase (with luggage in tow) trying to get some pre-op tests done and over with.

First stop was to have an ECHO performed which was pretty much a nightmare. Gabby's not so much down with being still while someone squirts jelly on her and moves a magic wand all over her chest. So the plan of action was to get her to fall asleep in my arms, transfer her to a bed, and then have the tech do his thing. Right. At one point we were talking about sedation to get the stupid ECHO done but eventually Gabby sat still enough for the tech to get the pictures he needed. Phew.

Next up was blood work which I was really REALLY worried about. It actually went pretty smooth. I think the nurses were more panicked than they needed to be, but at least they were on their toes!

After all of that we had the pleasure of sitting in a conference room for over an hour while we waited for a bed to open up. During this time, Dr. Azakie (gabby's surgeon) came in with the anethesiologist to give us the run-down. He let me know that he predicted the surgery would last around 4 hours. FANTASTIC. I hope that's really the case tomorrow (or today...It's just after midnight now, eek!)

FINALLY, a bed became avalable and we got settled in. Gabby seemed to like her little crib, yay! We got her some milk and food and she was content. However, she eventually got a little restless so we took a spin around our floor...


*note to self*
buy a wagon when we get home...she loved it!

Eventually the walk-a-thon around the hallways got old so I threw Gabs in her crib to see if she might let me update you all.
Probably not.




I think I ended up taking her for a few more spins in the wagon after these pics were taken...how could I not? She is definitely not short on personality these days.
We still hadn't completed the last pre-op procedure on our list (EKG) by nightfall. If you have ever had an EKG, you know there are wires ALL OVER your abdomen. The staff quickly caught on that Gabs would not be having any of that so they geared up to do the EKG after she went to sleep for the night. Well...it's now 12:12am and they have attempted the EKG twice, both times ending in tears. I even cried the second time around.
I had to put my foot down about ten minutes ago. They wanted to try the EKG again and I told them no. They can do it in the morning. I just want her to sleep. She is exhausted and she needs her rest. Thankfully, they listened and my girl is sleeping peacefully. I, on the other hand, will be getting NO sleep tonight. Thank goodness for internet access.


I will definitely keep ypu all updated tomorrow. My cell phone gets absolutely ZERO reception in this hospital so look for updates via facebook and blog...or shoot me an email if you want! I appreciate all of the thoughts, prayers, and kind words more than you all will ever know. Thank you so so much.
xo

Wordless Wednesday...sweet kisses.

7:00 AM Posted In , 7 Comments »



just a little update to yesterday's post....

10:41 AM Posted In , 11 Comments »
I am happy to report that Cam seems to be fine today. No coughing to report of so optimism has returned. YAY!


I'm not sure I shared here yet, but I got a new Flip camcorder a few days ago so I have been taking videos of the kids like crazy. I just thought I would share this video of Gabby perfecting her newly acquired milestone...




I have heard from many parents and doctors that it is not uncommon for babies to lose some of their milestones after open heart surgery. Infants tend to stop smiling for a month or two, or self-feeding may be placed on the back-burner. I can't tell you how excited I am that Gabby has finally learned how to get around. I'll be so sad if she completely forgets how to crawl. I know she'll figure it out again soon, but still, I'm sad.

In other news, we're heading out for San Francisco tomorrow evening. I'll be running around all day like a chicken with its head cut off trying to pack and compose lists of things I think i'll need. I can't tell you how many novels, puzzles, and sudoku games I have bought and really...will I even be able to concentrate on such things? Doubtful. That's another big worry on my mind. How does a parent stay sane while their child is having open heart surgery? I don't drink so that's out of the question. Maybe I'll take a unisom and try and sleep in the waiting room. Ugh.

I just can't believe the day is finally around the corner and no one has called to cancel.

In the past, when our surgery date was approaching only to be rescheduled days before, I would start to get a little anxious about a week prior to the big day. This time was different. I think I was so sure it wasn't going to happen that I was in denial. Well here it is and the freak-out session hit me at the least appropriate time today. How embarrassing.

I decided to make a trip to Target to get a couple of last minute items for our trip like travel loofahs (they really make them...check em' out at target!) and such. Before I checked out, I thought I would look for something for Gabby to keep in her bed with her to help comfort her. I ended up finding the cutest plush musical giraffe. When I pulled the pull string it began to play "twinkle twinkle little star," and for whatever reason, this set me off. My eyes welled up with tears and I thought "this is perfect for Gabs." I'm sure the other customers at Target thought I was looney tunes crying over a pink giraffe and cuddling it in my neck, haha. I truly think it will bring her comfort being that her mobile above her crib plays the same song...maybe it'll feel a little like home. Probably wishful thinking, but oh well.

Today, I did some reading of blogs I don't normally follow. I found a few written by parents who have gone through open heart surgery with their children and I have to say, it freaked me out more than it comforted me. As of now, I am terrified of what will happen after surgery. Anyone who has seen my girl in the last couple of months knows she is pretty feisty. I know she'll be sedated and all of that but what happens when she becomes a little more coherent? She won't leave a bow in her hair for goodness sakes...tubes down the nose and coming out of the neck and chest?!! I'm having a panic attack even thinking about it.

Anyway, these are my late night thoughts...

This will no-doubt be a very eventful week or two for my blog, so get ready to read!! And please comment. Knowing I have readers out there thinking of Gabby is very reassuring.

Goodnight.

Nervous...

10:29 PM Posted In , 5 Comments »
but not about what you think...

Tonight I came home from a fro-yo date with my girls and noticed that Cameron was coughing an awful lot while watching Spongebob (insert dark, ominous tones here.) Sure enough, by bedtime he was coughing A LOT and the nose was dripping to boot.

I wonder if I bring this on myself. These past two weeks I have been so worried about Gabby staying healthy and I just knew this would happen. Granted, Gabby is still healthy but I can't help but be a little pessimistic right about now. I feel like we're doomed. Sigh.

We have a pre-op appointment with her pediatrician on Wednesday so we'll see what develops (or hopefully doesn't develop.) Fingers crossed.

If we get lucky and Gabby avoids these snifflles, we'll be heading out to S.F. on Wednesday evening and we'll be checking into the hospital on Thursday morning. I will be sure to update the blog frequently as well as Facebook so be sure to check in.
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