Well, after this last hospital visit, my body shut down. I have a full blown head cold. I’m sure it has everything to do with our last 9 weeks.

Sisters hanging out at the hospital.

I’ve been a little bit down lately. Depressed. Whatever you want to call it. Once we got discharged on Sunday afternoon for the second hospital visit…coming back to reality was hard.

After the 2 sticks to get a contaminated blood culture

SO GLAD my sister April had flown in from Japan to surprise me!! She has been keeping off the depression I think. Taking care of my house, my animals, Lindy and learned how to do Ruby’s NG tube feedings so she got up in the middle of the night to feed her while I slept and just pumped. We have enjoyed her company so much and I have a lot to learn from her. She NEVER rests. Always working, cleaning. She even steam cleaned my car one day. She has been spoiling Lindy rotten as well. Grandma Z is flying into town in 2 days to help out during surgery.

Since Ruby does not have a bacterial infection, we will re-run the blood work tomorrow for pre-op I will ask the phlebotomist to wear gloves AND use alcohol wipes 3 times on her arms. Surgery is re-scheduled for next Thursday, October 6th. I must say, at the rate and luck we are going at…I’m super super nervous about surgery. I just feel nothing is going the way it should. The last 9 weeks have been crazy -attacked from all sides and what makes me think those attacks won’t come after open heart surgery?! Makes me nervous. I don’t believe in luck or anything like that. I have faith in God…but that doesn’t mean bad things won’t happen. We’ve learned that over and over again. What is with all these attacks?

This week she has started smiling! It is beautiful! Can’t catch it on camera yet…you can almost see it in the picture below. She just lights up when she sees/hears me. Love it.

Ruby has hit 11lbs now! We had a doctor appointment again today and she is a growing girl. Ever since the NG tube was placed she has been gaining weight appropriately. I had a little sit down chat with the doctor and explained that in hindsight…when Ruby was fussing and irritable and upset for many hours a day…it had to have been because she was STARVING. Looking back, we didn’t realize the severity of her heart condition but having spent time on the cardiology floor at the hospital…it is a pretty common thing for cardiac kids to not eat well. I guess I wish somebody would have stepped in sooner to place the NG tube. We just kept thinking she had acid reflux or colic…but with the amount she was eating then and eating now…she was starving. Also, I wish the cardiologist would have knocked me over the head harder. I must have been in a lot of denial regarding nursing Ruby. I just thought the cardiologist was bias against it. She didn’t really sell it well to me. We learned a lot being on the “heart” floor of the hospital at Children’s. Eating for cardiac kids is like running a marathon. We shouldn’t make it any harder.

Any ways, our pediatrician took it to heart and actually agreed with me, hindsight that it might not be acid reflux but she was hungry. I basically told him to think about that next time he gets a cardiac kid and find a solution faster. It was nice that he took my feelings into account and Ruby’s situation. I know not all kids are the same, but he agreed with me.

I have a lot on my mind. I thought I’d write out what I am thinking about constantly. Might help me feel better.

1. All the thank you notes I need to send out. SO MANY of you have shown your support by sending gifts and I feel ROTTEN that I haven’t thanked you in a timely manner. Just irks on me. I think about it about 8 times a day. Recently we received a generous check from my mother’s work back in Kansas -completely overwhelmed us with the generosity. Someone anonymously dropped off a hospital care package to our doorstep which included hospital cafeteria gift certificates and much more. Also had a dear friend from American Eagle stop by with a bunch of 77kids clothes for Lindy and then my old department also gave us GENEROUS gift cards to use. I was completely shocked. What amazing friends.
2. Lindy. She is starting to lash out emotionally, wanting lots more attention than I have energy for. She is tired and upset and probably feeling jealous of all the Ruby attention. We find ourselves short with her because she is not obeying and having bad attitudes…we keep using the “there is a lot going on” excuse. I’m getting tired of that excuse. I don’t know when I should expect Lindy to obey because that is what she is supposed to do or still be sensitive to the fact that her life has been hectic the past 9 weeks. When you bring a second child home there is a fine balance but when your second child takes up lots and lots of time and attention…it is harder.
3. Ruby of course. Having lost one child already, I try to not even think about surgery and all the risks. I’m so afraid they won’t get her heart started again after surgery or that she will be oxygen deprived and come out a totally different little girl.
4. Dale and I are exhausted. Tired. and he still has school and work and more work. Everyone has been very flexible with us and his schedule but he is tired and really doesn’t WANT to do anything but be with us, his family. Hard to find motivation.
5. On that note, I have NO motivation to do anything either. I am just doing the basics, barely that. Shower. Pump, Feed the kids.
6. My 30th Birthday is this weekend. I wanted it to be memorable. We must wait though due to some scheduling. I want to go out with my girlfriends (invites coming soon) but I also want to just celebrate with my family. Dale, Ruby and Lindy. Feels weird that I won’t be in my 20s anymore!
7. My sister-in-law who came into town with her family and made about 20 meals and stuffed my freezer FULL of them before she left. I have yet to thank her and her family and feel rotten about it. I didn’t even get to say goodbye to them the morning they left because I hit the snooze button about 15 times. Ugh.
8. Holding my breath that Ruby doesn’t pull her NG tube out when Dale is not around. He has been able to place the last 2 that she pulled. That relieves some of my anxiety. We also put a glove on her hand and she hasn’t pulled her NG tube out since!
9. Miss singing in the choir, seeing my middle schoolers and friends at church and Bible Study. I know I won’t get back to those things anytime soon, but I sure do miss it all.
10. Annoyed that no matter how I pump or when or using all the little tricks…I never have enough to keep up with Ruby. I really think it has to do with my relationship with a machine and my stress level but I am again not going to give up.
11. All the e-mails, facebooks and phone calls that we have received that I just haven’t gotten around to answering. I am overwhelmed -completely in a GOOD way but It weighs on my mind. I read everything you all send, I just haven’t made the time to respond.

We love all of you and we are just going to wait it out until surgery! The pediatrician talked us into doing Ruby’s 2 month shots BEFORE we go to the hospital and all the germs. Last week before surgery they said, DON’T do shots because if she gets a fever, we won’t know why. We have a week now, so we squeezed them in. She is pretty unhappy tonight.

Good news is that they did not find ANYthing inside Ruby growing bacteria. Bad news is my sweet baby had to go through every invasive test that a 2 month old can go through.

They have boiled it down to a contaminated blood sample that revealed bacteria. So, essentially, her skin wasn’t clean good enough when they drew her blood and something on her skin caused ALL OF THIS DRAMA. Surprisingly they say this happens all the time?!! Why in the WORLD is this happening all the time? Can you imagine bringing your child in with nothing noticeably wrong and having to have 3 SPINAL TAPS and bloodwork and urine culture all because somebody didn’t do their job right? It was awful having to see Ruby go through all this. I can’t imagine an older child that can vocalize their pain. Really frustrates me and makes me sad that people have to do this everyday with their sick kids.

So, after spending 5+ hours in the ER, we were admitted again into the Children’s Hospital while they pumped antibiotics into Ruby’s head IV while we waited for the spinal tap results and the second blood culture draw results.

It took them 4 TIMES to get the spinal tap. 3 times in the ER and then they decided to go to ultrasound and have the needle guided that way. I am so glad that I have Dale. I could not stomach watching my child go through pain. Dale did the dirty work. My back hurts just thinking about it.

The doctor came in today and said that the second blood culture was not growing any bacteria so more than likely the first one was just contaminated.

*sigh*

We are relieved that there is no spinal meningitis or cancer or bleeding in the brain or any other craziness. We are tired and exhausted from this roller coaster.

I am full blown sick now. We all must just be sharing some bug.

So, to recap, the only “real” thing that we are looking at is the high white blood cell count which is what delayed us from surgery. And to put this in perspective. ANY kid that has a runny nose or ear infection will have a higher white blood cell count -so she is just fighting some bug. So, as far as we know, we wait for this number to start dropping and then we do this surgery.

Do you understand NOW why I called this blog “A for Adventure?”

Well. Got the bloodwork results. And we are headed into the emergency room at Children’s within the hour.

Apparently, with the blood culture, they found some bacteria. They don’t quite know what it is. Could have just been on her skin when they drew blood. Could be something worse.

The technician yesterday asked me if it was okay that she didn’t use one glove because “she’d be more accurate.” Who wouldn’t want the nurse to be accurate in a blood draw on your newborn? Maybe she transmitted something. I should have just asked her to keep the freakin’ glove on.

So more bloodwork and possible lumbar puncture.

I have no idea what is going on inside my baby. Something is obviously MORE wrong than we ever thought.

I feel like I’ve been hit by a truck.

We had a great morning, pre-op lasted about 3 hours and included bloodwork, a chest x-ray because of the cough and a visit with the surgeon pa. They were ok with doing surgery tomorrow even with the cough because she didn’t have any other symptoms. yay! Surgery tomorrow!

I got home.

Got a call from the pre-op group and they told me where to park, her feeding schedule and med schedule through the night..to be at the hospital at 6am. All the FUN details that actually make it happen.

Then.

I got another call beeping in.

It was the surgeon group.

Ruby’s x-ray came back just fine but her bloodwork didn’t. Her white blood count was high. Last Tuesday it was 14 and today it was 26. So, she is definitely fighting something. We don’t know what it is and if this is all it will be, just a cough, but we can’t do surgery.

Why didn’t they just keep us at the hospital and do the surgery last week. Why didn’t they tell us to just quarantine ourselves for a week? Why? Why? Why?

So annoyed. Irritated. Upset. Tired. cranky. emotional. angry with God.

Called mom. Told her not to buy the flight yet.

We see our pediatrician again tomorrow. Bloodwork again. If her counts are coming down, we’ll do surgery on Monday. If not. We wait.

Thanks for holding your breath with me. I’m not sure what you should be praying for at this point.

(yes, I know it is for the better. hallelujah that they found it now and not 1 day post-surgery. i get it. I am still angry at the situation)

My poor baby, this cough is wracking her body. Wish she felt better. 8 weeks is pretty small to have a cough.

We are on our way to our pre-op appointment. I have no idea what to expect…besides bloodwork and meeting to understand the ENTIRE scope of surgery…just this morning I thought to myself…are they going to admit her until tomorrow? I guess we will see what “pre-op” means!

My stomach is in knots. Primarily because of her cough. We went to Ruby’s pediatrician on Monday and they said more than likely the surgery will still happen since it is just a dry cough. She is showing no other signs of a cold or infection.

We will see!