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.

Post-Op Day 6

An Old Photo Just for Fun!

Papa being weird with Ruby when she was around 1 1/2 months old.
Silly Papa!


And Now For Some Recent Pics

Ruby's new diggs...
I think it looks like something from a high quality alien abduction film.

Ruby before her new hardware--and before a sponge bath.


Ruby and the new G tube. Her side also has a lot less Betadine on it.
Thanks Nurse Laura!

Surgery has successfully put in a temporary G tube for Ruby. Although it appears quite similar to her previous PEG J tube, it is a bit different. It is a smaller gauge (size 14 French) and it is inserted directly through the stomach wall, rather than endoscopically. A small balloon on the end of the tube is then filled with water to hold it in place. The whole process only took about 5 minutes, and Ruby was extremely sedated. Despite the sedation, the site itself is probably sore, but the poor girl is sore all over so I'm not sure whether or not she has noticed. Eventually we will need to put in a larger G tube and thread through a J tube. For the moment this tube is serving the purpose of venting quite well, which means her NG tube has been removed. I'm sure Ruby is even happier about that than I am!

Ruby's high temperature continues to fluctuate, ranging from 37.6 degrees C to 39 degrees C. At the moment she is on the low end of that spectrum. Due to this more blood, urine, and mucous cultures were gathered today. The previous cultures have all come back negative, with the exception of some yeast in her breathing tube. I asked if that was a major concern but the nurse said it isn't much of a problem. When we remove the breathing tube the yeast should go with it.

And on that note, she is being weaned successfully from the ventilator. She is off of the nitric oxide, and as of this moment has not suffered any desaturations, void of the times she is upset and waking. Barring any complications, she should be able to have her breathing tube removed tomorrow! Way to go Ruby!

Post-Op Day 5

Sorry no pictures today, just the news:
Ruby's fever continues to drive her heart rate up. Her temperature has been hovering around 38 degrees C all day, occasionally spiking to 38.5 degrees. The blood and urine cultures that were taken over the last few days still have not indicated any kind of infection, which has made us feel a little safer. The cardiologist on call tonight feels as though her fever is a result of her inflammation and/or reaction to all of the plastic tubing still inside her body.

Surgery still has not placed a new G tube inside Ruby's stomach. We were hoping they would have acted quicker in order to prevent the already exisiting track from closing. But it's Saturday, and you know the old saying, "Don't get sick on the weekends!" It's like pulling teeth just getting the doctors and nurses to talk to surgery on our behalf. If Ruby's track closes then she will have to undergo another surgery after she has healed well enough from this ordeal. This means that when she is ready to eat she will have to have a tube going into each of her nostrils. One going into her stomach to vent her, an NG tube, and one going into her intestine to feed her, an NJ tube. This will undoubtedly make her miserable, and we will be facing a constant battle to prevent her skilled little hands from ripping out the tubes. By the time we get surgery's attention it will be Monday, and her track will probably be closed. It's extremely frustrating that no one seems concerned about this except for Dan and I.

Other events of note: Ruby continues to wake and struggle with pain, but she is able to fall back asleep with less and less medicine. The doctors tried to wean Ruby off some of her medications but her blood pressure became a bit too low so they needed to resume the treatment. She is being successfully weaned from the ventilator, however. The doctors feel as though she will be able to safely breathe on her own within a day or two. Slowly, very slowly, she seems to be moving forward.

Post-Op Day 4

These are all old Ruby pics from a little before and a little after a month old.
What a big yawn!


She looks so little here!

"Don't eat me Papa!"

"What is this thing?"

"I like it better on my head!"

OK down to business...

Good news: Ruby's chest was closed this morning at 7:30. She now has a large patch of gauze and tegaderm covering her wound. So far there have not been any complications. There is always a possibility, however, that a problem could arise and her chest would have to be reopened. That would certainly be a large step back, so we are all hoping we won't have to see that happen.

Bad news: Ruby's fever has returned. Her temperture has been hovering around 39 degrees C for the latter part of the day. The cultures that were taken at midnight and during the day today have yielded no results as of yet. However, results can not be considered until at least 48 hours after the sample was taken, in addition her CRP levels were high. Her current status seems to indicate that she has an infection, although this can not be confirmed yet. I only hope that it is not a case of sepsis. The nurse has been reassuring me continually that because Ruby's color is good and her blood pressure has remained at an acceptable level (not low) that she most likely does not have an infection in her blood. Dan believes that Ruby may be having a reaction to the Lasix. He's been reading that some children can have fevers and low potassium levels after treatment, which Ruby also has. Whether this is more or less likely than Ruby having an infection is unknown.

Ruby also continues to require more and more sedatives to keep from waking. She has been building up quite a tolerance, which means her withdrawal from the medicine will probably be quite severe. I am not looking forward to the days they must wean her from them. I have heard many horror stories about the anguish these young children endure as they withdraw from their pain medication. I can't wait until this is all over and I can see her smiling face.

Post-Op Day 3

Ruby back in the good old days. Probably a little less than a month old here.


Our first family photo!

Ruby as of today. So sad to see her like this but she is still gorgeous.

Ruby condition has remained stable for today. Her fever has come down to an acceptable level without further need of Tylenol. Her heart rate has also slowed to a much more normal rate. Her blood pressure, however, has been rising to somewhat concerning levels. It has not spiked to the point where any medical intervention is needed, but the nurses and doctors are keeping vigilant watch on the numbers. Her urine output seems to also be at the level that is desired, but she is still on a low dose of Lasix. She will also be coming off of the Epinephrine soon due to the increased level of blood pressure.

Her G/J tube was successfully pulled by a general surgeon around 5:30 pm. The doctor had to make a small incision to extract the tube, but thankfully the procedure only took five minutes or so. Dan and I made sure there would be someone to administer anesthetics so that she wouldn't have one of her waking moments during the removal. We are very grateful that this issue has finally been resolved...at least for now. We only hope that when it is time to reinsert another G/J tube that the process will go as smoothly.

Dr. Tweddell also stopped by briefly to confirm that he will be closing Ruby's chest tomorrow morning at 7:30 am, barring no increase in swelling. I hope that with this closure Ruby can truly begin to heal. From the time it is closed I can have some assurance that her pain will be decreasing day by day. She will possibly be extubated at some point over the next few days as well. As I said in my previous post, I both anticipate and fear these milestones that bring Ruby closer to being awake. I am so afraid of the pain she will have to endure. I only wish I could take on all that pain myself so that she would never have to hurt.

Some Happier Times with Ruby

It was so hard to choose just a few pictures and a video to post from out happiest times with Ruby. There were just so many!


Ruby getting ready to make her appearance. Taken the day I went into labor, July 19th 2009. Ruby was born the following day on July 20th, at 5:45 pm.

First Photo. Before all the tubes came into out lives.

Papa showing Ruby her monitor. She LOVED to stare at it!

Last family photo before surgery, taken November 8, 2009.

Ruby loves hugging something while she rests. This time it was her little cow.

As I said she liked to hug things! This little giraffe plays music too!

Wearing her beautiful Irish sweater and hat, made by Milwaukee's own Mary Mac.

Showing off her pretty eye lashes.

Such a happy girl!

Gotta love those cross-eyes!

Taking a nap with Papa.

Last picture with Granny and Granddad before surgery.


Snuggle Bug!


Sporting another Mary Mac outfit, so cute!

Post-Op Day 2

Ruby and her tree of pumps

Ruby Tubey with a cute little bow in her hair

We liked the bow better in her hair but she apparently didn't...so now it's on her forehead

Interior of the CICU

We seem to have finally straightened out what we will do with Ruby's G/J tube. For those that are unaware Ruby has a G/J feeding tube that has been invaluable in helping her grow over the last few months. It has virtually eliminated her horrid reflux, and therefore we have considered it to be her savior. However, Ruby's heart surgeon, Dr. Tweddell, feels that the tube must be pulled before he can close her heart. The tube's proximity to her open chest apparently creates a high risk of infection. Therefore, our beloved tube must go! So, after an extremely stressful two days of figuring out how to pull this tube, endoscopically or through the stomach wall, the doctors have finally come to a consensus that seems reasonable to us. Reasonable, but not pleasant. So tomorrow they will surgically remove the tube through her stomach and suture the wound. Then after Dr. Tweddle is able to close her chest, they will take out the sutures and place in a regular G tube as a temporary means of venting her stomach and keeping the tube track open.

Other than her tube issue, Ruby is doing fairly well. Her blood pressure and heart rate have reached a far more acceptable level due to the medication she has been receiving. Her urine output has increased since the doctors have prescribed Lasix. One concern that still remains is her high temperature, but it has been slowly falling with the treatment of Tylenol. It reached a high of 39 degrees C last night and is currently 37.6 degrees C.

What is concerning and frightening are the times when Ruby stirs and writhes. I can't imagine the intense pain she is feeling and it terrifies me to know I am powerless in helping her. The nurses have been extremely attentive in managing her pain but every moment she stirs I cringe for her. It truly is awful that any child should go through this, and although some people like to say things like, "you will be a better person because of this" or "Ruby will be that much stronger" I truly can find no good in her defect. I wouldn't wish this much pain on anyone, even if it meant they would come out "better" on the other side of it. The reality is that this isn't a test from God or a testament to what great parents we are. It is a result of a genetic defect--an imperfect sperm or egg that regretfully was missing a piece of DNA. And our poor beautiful girl is paying the price for that insolent cell.

I personally have spent the day trying to keep Dan calm, wrangling the doctors, and caressing, kissing, and singing to Ruby. Sometimes I am afraid to touch and talk to her, though, because she seems to wake more when she hears my voice or feels my touch, so I usually try to remain quiet. I have asked Dan to bring some music for me to play her and we will beginning to retrieve some of her musical toys in so that she can hear them. At this point I both fear and anticipate her waking. I will be so glad to see her beautiful eyes once again, but I certainly don't want to see them full of tears. Hopefully things will continue to go smoothly and she will feel less pain as time progresses.