The Phamily Blog

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.