The Phamily Blog

Well, here we are! We're home and, for the most part, doing very well! I am so grateful that Gabby's surgery was a success and we were able to take her home after only five days! WOW!
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They discharged us on Wednesday and I have never been more happy. Gabby was all smiles once we loaded her into her carseat. She was like "peace out suckas!!"
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After we got home, I felt a little lost in regards to how I was supposed to be caring for her and her incision. They seemed so rushed and I was just so eager to get out of there, that the lack of information didn't seem like a big deal at the time. Really, the only instructions I was given were to not let her swim for three weeks, to avoid picking her up under her arms, and to make sure all of the bandages have fallen off by two weeks post-op. Luckily, I know I should be looking out for signs of infection as well, but it would have been nice to have a print out or something. Oh well.
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Here are some pics of the princess shortly before her discharge. She was soooo happy to have all of her IV's and wires removed.


They took the gauze off and told me this is how her incision will remain until those bandages fall off. It's actually not as gruesome as I thought it would be.

Guess what!? Gabby is laying next to me, fast asleep, with absolutely NO tubes coming out of her little body!! Ahhhhh. I love it! Guess what else? I got to hold my girl about an hour ago. She was so happy to get out of that bed. I wanted to cuddle on her but she was having none of that...she just wanted to sit up, stare out of her glass windows, and have me slap her back...weirdo.

They took one last xray of her chest today and also did an echo. I haven't heard anything regarding these two things, but everyone around here keeps telling me they're getting us out of here tomorrow. Can you believe it!? I am ECSTATIC!

It's perfect timing too since last night was the night from hell. I had HAD it. Now that I know tonight will be our last night, I know I can hang on. It's almost over.

I just wanted to say thank you to so many of you.

ESPECIALLY my mom, who stayed with me through the weekend and trekked back and forth from the hospital to the hotel. I know it was a pain, but I very much appreciate it.
To my Aunt Leigh who dropped her plans and came to hang with me on her BIRTHDAY, and who brought me the most delicious cookies in the universe. You rock.
To the best Hubby in the world for remaining cool while "out of the loop" thanks to a lack of cell phone reception...love you!
To all of our friends, family, and people I don't even know for calling, texting, emailing, facebooking...I love you guys.

You like my oscar speech?? Haha...no seriously, thank you all! It meant/means so much to me! We are so lucky!!

I am completely and utterly exhausted and soooooo beyond ready to go home. I can only imagine how sweet Gabby must feel. I hope you can excuse my lack of updates. Take it as a good sign though....she is so much more alert and herself, therefore, I have been staying at her bedside trying to entertain her. It's tiring to say the least.

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Yesterday was a good day. She had fewer doses of morphine and when she wasn't completely out of it, we were able to interact with her and I even saw her smile a couple of times. She started eating solids which was a relief. The nurses were hoping to see a bowel movement from the princess but I was convinced her wasn't going to happen without a little...coaxing...and I was right. After a couple of attemps, she still had not "produced," so we left it alone for the night and worked on the issue a little more this morning.

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Today was little more rough because the nurses stopped giving her morphine since it causes constipation, so not only was her belly irritating her, but I am sure she had pain everywhere else as well. Tylenol wasn't cutting it. After a dose of Miralax (which takes 2-4 days, WTH?) and another enema, she finally got a little relief. We saw an immediate change in her attitude and I was so relieved.




This is what the majority of the day looked like...but at least she was super alert and showing us how much strength she had! That was nice to see.

It's 11pm and I feel like today was a good day. Gabby woke up a few times and even did some of her quirky "gabby antics" that I simply adore. Just as I was submitting the last blog entry, mom came running in the waiting room and told me Gabs was awake and they wanted me to try and give her a bottle. She guzzled it down like it was the most amazing thing she had ever tasted! I was so pleased. Look at those bright eyes!


However, things took a scary turn after she finished her bottle. I'm not sure if she was ticked because there wasn't more milk for her or if she was mad that we laid her back down but let me tell you....she was NOT happy. She started thrashing around and trying to scream and her throat was making a terrible, TERRIBLE sound. She was gasping for air and I am not sure I have ever been more scared in my life. The nurse was freaking out and calling for help which was my cue to get the heck out of the room so I didn't have a heart attack. As I stepped out of the room, I heard the nurse yell "WE NEED A DOCTOR!" It was terrifying. I chose to walk out into the waiting room and collect myself. About ten minutes later, mom came and got me and told me everything was fine and she had calmed down. I was so relieved.

The nurses think the milk caused her secretions to thicken up a bit in her throat. This, combined with the swelling for the breathing tube was a bad combo. They ended up suctioning her throat which added insult to injury. She sounded so much better afterwards though...I'm just so relieved they didn't have to put the tube back in. That would have broken my heart.

I snapped a few pics of the machinery just so you all can get a glimpse of what I have to stare at all day long. It actually doesn't look that overwhelming in these pics but being in that tiny room makes it all seem so much scarier.

I forgot to mention- They did take her completely off of the oxygen but her saturation levels went down a bit so they put the canulla back in. No biggie. Also, I just fed her again and it was a way smoother transition this time. The nurse gave her morphine and tylenol before the milk and it made her nice and relaxed so no flip out! Sigh.

Okay, back to the room I go! More tomorrow!

Just a quick note-

Gabby is doing well but it is clear that I need to be put on some sort of anxiety medication. My eyes do NOT leave those monitors and every time an alarm sounds I absolutely freak out. It is so not cool.

They removed her catheter and gave her some lasiks (sp?) to get rid of all of the extra fluid in her body. They are getting ready to turn of her blood pressure meds and the nurse suspects that they won't be turning them back on because she has done so well.

She opened her eyes for about fifteen straight minutes today which was wonderful. She wasn't the happy smiling girl I know and love but what can I expect? I was just excited to see her big brown eyes.

Her heart rate has gone down a smidge which was why I was so anxiety ridden over the monitors. I just talked to the nurse though, and she assured me that her levels are totally fine even though they are a tad lower than they were. Huge sigh of relief.

We're gearing up to turn the oxygen off completely and see how she copes. In a way this scares me even though I know she is breathing just fine and will likely continue to do so. It's like the breathing tube was a safety net and now that net is gone...I know, I need to chill.

A little info on Gregory- I overheard one of the nurses explaining to a doctor that he had a little "episode" last night where he stopped breathing (see why I am nervous about the lack of breathing tube?) So anyway...I guess that's the story. His family is here today so I am thrilled he has people that know and love him by his side.

Alright, well that's all for now. More to come!

Look! No more breathing tube! Hooray!

So last night after I updated the blog, I returned to Gabby and the nurse was waaayyyy nicer than she was before. She actually started talking to me and telling me what she was doing which was very much appreciated. I felt confident enough to escape to the parent's "sleeping room" and try and get a little rest. When I returned bright and early this morning I found Gabby like this:



It pretty much made my day! She is on just a tiny bit of oxygen through her nose but other than that she is breathing completely on her own. What a relief. She is a lot more comfortable today and I know that breathing tube was probably her main irritation yesterday. She still grimaces every once in a while but all in all, she is a much happier girl.

There is a baby right next door to Gabby who is just as cute as can be. His name is Gregory and he also has Down syndrome. He also had the same repair done. He also has the same cardiologist we do because he is ALSO from our city! What a coincidence. Anyhow, the ICU rooms are all glass doors so we can see everyone all the time. My mom and I have been watching Gregory through the window since yesterday because he is soooo cute. Yesterday he was playing and doing so well but when I came in this morning I noticed he had a breathing tube and the staff was paying extra close attention to him. I am not sure what happened but I am worried about him. He doesn't have any family here with him so I feel terrible. So, if it's possible, send some T&P's over to Gregory.

Alright so the agenda for the day is to remove Gabby's catheter, start her on some pedialyte and see if she tolerates that. If so, we can start giving her milk again, yay! She'll love that. What else, what else? Oh- They lowered her blood pressure meds and she is tolerating that well. Everything is going smoothly and I pray it continues to go that way.


I'll continue with the updates. Thanks again for all of your love and support from all across the world!! We couldn't do it without you!

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...

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...

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.

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.

UCSF called again and gave me a NEW date, but it isn't for certain I guess. My thought is that if she had the nerve to call me and tell me they were thinking they were going to have to push her surgery to the 10th, chances are she isn't going to call back and say, "PSYCH, you're in on the 26th still!" but I really REALLY hope that's how it plays out.

Sorry about all of this back and forth business guys. I hate it.

I got a call from Gabby's surgeon's office today. They have rescheduled Gabby's surgery for Friday, June 26th. Apparently there is a mom that is going to be induced on wednesday and they will need to perform surgery on the baby immediately.

I am so bummed. I was really ready and getting mentally prepared for WEDNESDAY but now I have to deal with another two days of anxiety. Not only that, but my dad bought non-refundable tickets and is now going to lose out on those. Big bummer. Anyway, just wanted to keep you all posted.

I scheduled an appointment with Gabby's cardiologist for this past Tuesday just to ask some questions and try and set my mind at ease just a smidge. I have been pretty nonchalant about all of this but being in that doctors office, asking those questions...it kinda hit me. In twenty days I have to hand over my sweet, sweet baby. I can't even begin to describe the ways in which she has touched my heart.

I know all children are a blessing to their parents but this is different. Again...there are no words to explain it, so I'm not even about to try.

Anyway, so there I sat with my notepaper with the scribbled list of questions I had for Dr. Rivera:

*okay so which holes are being repaired again?

Two ASD's (atrial septal defect), one VSD (ventricular septal defect), and a leaky Mitral Valve.

*how do they repair the holes? Sutures? Patch?

They patch the holes. Dr. Rivera then grabbed a specimen container in which he kept some sample patches. They looked like white cloth bandages...weird!

*Recovery?

(this is where I got teary eyed and scared)

Dr. Rivera suddenly took a more serious, somber tone.

"You should know that seeing Gabby following surgery will be very difficult for you. (GULP)

She will have one tube down her throat to help her breathe. There will be a tube down her nose for feeding. She will have a catheter. She will have four small tubes in her abdomen to help drain fluid. She will have an I.V. Her scar will be quite large...probably around 5 or 6 inches long down the center of her chest."

Bring on the water works! Ugh. This sucks.

I don't know why it didn't hit me until then. I mean...I knew this was going to be a serious procedure. I think I must have been in denial until that moment. My cheeriness I had when I walked into the office had quickly faded. I was sad for my baby.

There is one question I was NOT about to ask. Call it denial, I don't care...I wasn't going there. Still, Dr. Rivera asked "is there anything else you'd like to ask me?" I shook my head no. "Nothing?!"

Nope.

"You know, I can't pretend like I know what you're going through with all of this because I have never had to go through it myself but I would like you to know that in all of my years of doing this...I have NEVER lost a patient."

Really? (BIG sigh of relief)

"Well, no...I take that back...I did lose one baby but it was right at birth and I knew before the baby was even born that he probably wasn't going to survive...this baby was in BAD shape."

Apparently that was supposed to make me feel better...didn't really work though. Still, I am grateful that he has seen only one death thus far.

Dr. Rivera continued and told me that he has researched these surgeons thouroughly and has complete faith in their abilities. "Even in such involved procedures such as Gabby's, everything always turns out well."

"Oh, so Gabby's procedure is fairly involved?" (Dumb question right? Is there such a thing as an open heart surgery that is not fairly invloved? I don't think so.)

"Yeah...I'd say so, but honestly, everything is going to be fine."

I think I finally let out a huge sigh at this point. He made me feel a lot better and I do have complete faith that everything will go smoothly. Still, I had one more question before walking out of his office.

*We had planned a trip to Hawaii exactly three months after her surgery? Be honest doc...is it a bad idea?

"It'll be fine, just one thing though... you need to MAKE SURE you bring your cardiologist with you." (wink)



So there you have it. Everyday closer to June 24th brings a deeper feeling of uneasiness. I'm ready to be done with this.

As you may have noticed from the ticker above, my beautiful princess will be undergoing open heart surgery in less than a month.

Kele offered to make a button for my girl and I think it turned out precious. So, if you would like, please grab it and post it on your blog in the sidebar or where ever you like...

We could use any and all prayers!

Thanks again, Kele!

Mark it on your calendars:

June 24th, 2009

That's the day. She'll be admitted on the 23rd so they can get all ofthe pre-op work done. It will be an estimated 7-10 day stay.

On the brightside, we'll be having a kickass party now that I know the surgery won't be until after her birthday.