RUBY ROCKS!

The fundraiser was an enormous success. A great deal of money was raised to help our family pay for all of the medical expenses for Ruby’s care. We are, simply put, awestruck by the kindness shown to us. There was more than one time during the event on Saturday when I had to hold back tears as I looked about and saw the bustling crowd of people all coming together for a little six month old baby.

Sometimes I think back to our experiences and ahead to the unknown and I feel so weighed down by Ruby’s condition. Then I sit back and realize that I’m not even the one who has to go through all of this horror. It’s my little girl who in her 6 months of life has had to endure more pain than I can imagine, and it isn’t over. But she is still able to smile, as so many of you thankfully got to see on Saturday. And it’s that immense outpouring of love that I witnessed that makes me smile too. That, and of course playing with my daughter each day.

Anyway, what I really want to say is THANK YOU! There are way too many people to thank by name. All of you who volunteered your time to make this event possible are truly good people, right down to your core. I also thank everyone who came and showed their support. I would give anything to rid Ruby of her health problems but I am so grateful that these past few months have shown me the amazing compassion and love that we are surrounded by. I can only hope that I will be able to show how much you all mean to me, because there are truly no words to express it. I hope all of you sleep a little better at night knowing you made the world of a difference to a family that has seen very little good these past months. Thank you, thank you, thank you.

A very happy Ruby thanks to all of you!

The Witching Hour

Since we've brought Ruby home she's had a HORRIBLE time going to sleep. She's a big napper, and sleeps every 2 hours or so during the day. And don't tell me to keep her up more during the day because that just makes for a rough day in addition to a rough night! She usually starts getting tired for bed around 9:30 or 10...but sometimes later. And then the screaming starts. Some days are better than others. For instance, on a "good" night Ruby will only cry intermittently for an hour. A bad night will mean around 1-2 hours of continuous crying and waking during the night. Thankfully the waking during the night is rare. Usually she just stirs a little for a diaper change around 4am and then it's back to bed until 8 or 9. I LOVE that she sleeps in this late because I am so not a morning person. I could easily sleep in until 10 most days. I'm actually kind of glad that Ruby gets me up and going so that I don't sit around in bed all day.

Anyway, this whole issue brought me to do some internet research on why babies have a hard time falling asleep. Turns out their isn't a lot out there on why, more about how to stop it. And I gotta say...not so happy about what I found. I personally do not approve of the "cry it out" method. Babies are meant for cuddling and they cry because they want to be held. I'll be damned if I'm going to let my kid, who has been closer to death then I'd care to think about, cry alone in a room...that's just not going to happen! Ruby sleeps in a co-sleeper next to us and that's where I like her. And when she's crying I hold her...SHOCKING I know!

But back to the sleeping baby research. Pretty much all of the other advice was useless for Ruby for various reasons. "Try breastfeeding right before bed." Well that's not going to happen unless we can back track to when Ruby was 2 weeks old and stop the docs from adding Similac to her diet. That whole incident sensitized her to milk and soy protein and she had to stop breastfeeding while I purified myself of all dairy and soy...and despite my persistent efforts she hasn't been able to breastfeed since. (This by the way, is the thing that saddens me the most on the long list of things I've missed out on).

Tip #2: "Try giving them a bottle right before bedtime." Well that's not going to work either considering Ruby can not eat. So I say, "OK internet what else have you got for me?" The answer, "Try giving your baby a nighttime bath." HA! Ruby absolutely hates baths! I keep hoping one day she'll surprise me and turn into one of the smiling splashing babies you see on the Johnson & Johnson commercials but it has yet to happen!

So until I hear of some new bedtime miracle I guess Dan and I will just keep using ear plugs and trying our best to soothe little Rubert. We just keep telling ourselves, "She will grow out of this." She will right?

Goin' to the Zoo, Zoo, Zoo!

Kissy Papa

Danny in his cute hat

The tiger thought Ruby was a kitty treat

Here kitty, kitty

In the nocturnal mammal room

iPhone quality pictures...note the blur on the bottom in the cage

Getting sleepy

Fishy!

"Entertain me, Papa"

HOME HOME HOME!

It's so hard to catch her smiles. Here's the end of one!

Doesn't she look too cool in her hoody!

Just relaxing in the La-Z-Boy

I love this pic! Too bad we can't get her out of the thing without a huge production. Only 3 more weeks before we can pick her up under her arms!

Wow! Sorry I haven't posted in so long. Unfortunately these pictures are repeats of the ones on facebook, I haven't had time to upload the others from my camera. And just so you know I've tried to write something several times but Ruby always wakes up and then I drop it and forget about it! So I'm going to try and make this brief so that I can actually post it.

Can I just say that I LOVE, LOVE, LOVE having Ruby home. I am incredibly busy and hardly sleep but I am in heaven because I get to spend all day with my favorite person in the whole world.

Despite my joy at having Ruby home, it hasn't all been splendid. Ruby has still been having GI problems. I tried reintroducing soy to my diet, upon her GI doctor's suggestion, and Ruby now has some blood in her stool. So after 5 months of not eating dairy or soy and pumping like mad, I've decided to stop. I have enough of a frozen supply that should last for at least a few months, so that helps to soften my guilt. It will be so nice to be able to eat normal food again (not to mention cheaper.) And I won't have to ignore Ruby every 3 hours in order to pump, another plus to quitting.

That's all for now...I will try to get this posted before Ruby completely wakes up!

Post-Op Days 11-13

Ruby's personality has been slowly returning to us. Dan and I have received a few precious smiles, beginning yesterday and continuing today. We have to work a bit harder for these smiles than we did before, and Ruby is still extremely irritable, but we have seen glimpses of her true self these last two days. We've also been able to hold her more and more, which has helped considerably during her fussy moments.

What plagues us is her discomfort. The doctors decided to try feeding her through the "temporary" G tube yesterday. We are not holding out much hope for this working and are frustrated that they are unwilling to replace the G/J tube they removed. Because of this we are unsure if she is in pain because she is still in withdrawal, or from her tummy and chest being sore, or from possible reflux. She has vomited twice since they resumed her feeds. This is considerably less than when she was last fed into her stomach, but it is more than when she was fed through her J tube. She is gagging and coughing more frequently, but she has been doing that since she was extubated. In short we just don't know what's going on.

Dan and I plan on talking with the doctors tomorrow about Ruby's care plan, specifically regarding her feeding. I have many concerns about G tube feeding her, even if she can handle the volume. If this is the case then she will still need to be vented 24/7, which in my opinion is even more difficult to manage than if she were J fed with a pump. In addition to this, at the moment they are feeding her continuously anyway, so I don't see much of a difference between this type of feeding and J tube feedings. It is clear to me that this will be the issue that keeps Ruby here the longest.

The doctors and nurses have also been weaning Ruby from the oxygen. She is down to 1/8 of a Liter per minute, and on this volume she functions fairly well. Her oxygen saturations typically reside in the low to mid 90s, but occasionally she does make it to the upper 90s. The nurse tried turning off the oxygen completely today but Ruby's sats fell into the 80s. When we spoke with a resident about this she said that her oxygen dependence indicates some type of lung disease (which we already know she has) that should get better in time. Sadly, however, this may mean that we have to live with the oxygen for a few more weeks. The doctors are still confident that she will be able to live oxygen free eventually, but right now Ruby's lungs can not fully function without it.

Post-Op Days 8-10

Now these are sats we like to see! 99% oxygen saturation.

Finally Sleeping!

HOLDING RUBY!

Papa gets his turn.

So much has happened over the last three days, both good and bad. First the bad news: Ruby has been going through withdrawal from the pain medication she was on. She has been shaking, whimpering, crying, kicking, and most importantly NOT SLEEPING! I truly have no words to describe how hard it has been to see her in such pain. She has also had breathing difficulties since they've pulled out her breathing tube. This is normal and caused by the swelling in her throat, but still has been a little difficult to manage.

Good news: Ruby's chest tubes have been pulled and we can hold her!!! This has been a complete joy. Even though she is extremely agitated due to the withdrawal, I have relished every moment holding her. The doctors also seem to have her breathing problems more under control with the treatment of steroids. In addition to this it seems as though she is slowly coming back to us. Her coordination is returning as she sucks on her binky and hands. She also seems to calm a bit easier, but this is a very recent change--as in within the last 4 hours or so. I'm hoping it sticks. So far she's sleeping peacefully in her crib a few feet from me. How I hope this means we are turning a corner.

Post-Op Day 7

Look no breathing tube!

Ruby listening to glow worm.


A group of Ruby's best friends sitting at the edge of her bed.
(Sorry for the blurriness)

A huge milestone was met today. Ruby was successfully extibated and is now breathing on her own with a flow of only 1 Liter of oxygen per minute. She has been maintaining her saturation levels well, perhaps even a bit more consistently than on the breathing tube because she isn't gagging as much. Her voice and breathing are still very raspy because of the swelling in her throat. She also has a few scary coughs every now and again. And although she is being weaned from many of her medications she is still extremely "out of it." She doesn't seem to be in an incredible amount of pain but is still very much not herself.

Despite this we are glad to see some signs of life in her. She has been opening her eyes ever so slightly, and occasionally makes some small noises. I want so desperately to hold her again, especially now that she is waking more frequently. I am afraid that we are still a few days off from that point though. She needs to be off of nearly all of her drip medications so that they can take out her final heart lines. And even though I can not yet hold her, I am glad to feel more useful. I can comfort her and sing to her and know that because she is partially awake, she is at least hearing and feeling me.

Papa trying to cuddle with Ruby as best he can without holding her.