My Birthday Gift

I had a birthday this week.... and for the first time in my life it really was just no different from any other day. I guess that's a sign of getting old? I actually forgot it was my birthday a few times throughout the day and had to be reminded. (also possibly a sign of age.) My dad at one point asked me if we had plans that night and I looked at him like he was crazy; It's a Tuesday night? Why? He had to remind me it was my birthday. Then... a dozen gorgeous roses showed up at my desk and brightened my afternoon (but I had forgotten it was my birthday again until they appeared.)

BUT I received an extremely exciting, uplifting phone call late in the afternoon from one of Emma's doctors telling me that her labs came back and they are ready to pull her PICC line out as early as the following morning! Happy Birthday to me!! That was an incredible birthday present! All of her numbers are normal (or within a few points of normal) except for the one that indicates internal inflammation. They said they don't expect that to drop this quickly, it will eventually come down as her organs get a chance to fully heal and relax from everything (including the antibiotics.) As of tonight we are switching to a regular oral dose of antibiotics. I have a feeling it may even be more difficult on us though. At least with the IV meds she couldn't spit them back out in your face. Yes; that's what happens.

When I got home from work, I walked into both of my munchkins waiting at the door for me with their own little birthday art that they made during the day and they made me cookies. That was the best. They were SO excited about giving it to me. (But then Drew wanted his back?)

Emma giving a thumbs up to her last night with her IV!! Yeah!!!

Me and my Boy

'A rose can say "I love you",
orchids can enthrall,
but a weed bouquet in a chubby fist,
yes, that says it all.'
~Author Unknown



Septembers End...

Where the heck did September go???
We've been keeping really (really, really) busy around here! Emma is doing better with each passing day. As she would say, she's a 'Crooper' (Trooper). It took me a few times to figure out what she was trying to say.

I thought I'd give you a glimpse of what our new nightly routine has been like with her IV meds.

This is her actual PICC line (Well, the part that is exposed.. It's actually 19 inches long, goes up her arm/shoulder and to her heart.) This was when the IV was hooked up, otherwise we keep it covered up really well so that she has NO access to it, to be able to pull on it! I'm glad we have had cooler weather because I cover it up and put long sleeve shirts on her so she can't see it. She actually forgets about it most of the time. Although sometimes it gets itchy, and I have to try to keep her from itching it.

And, this is what I use each time we do the antibiotics (which is every night) First, the picc line needs to be cleaned really well with alcohol swabs, and has to air dry before hooking anything up. After it has been cleaned, if it touches anything (including her own arm) you have to start over, because anything on the end tip of the picc connection will go straight into her blood when I start the IV so it has to be really clean.

Then I open the lock on her line and use one of the saline syringes to flush the line before starting the antibiotic. The antibiotic balls (They look like little hand grenades... they are pressure released) have to be kept in the refrigerator but should be taken out of the fridge a few hours before using them. They say it takes longer to cycle through if it's cold, but honestly I have done it each way and it's the same amount of time. Again, the end of the line has to stay completely sanitized the entire time so I have to quickly switch the syringe with the antibiotic connection without it touching anything - and then release the lock on the antibiotic - - and then.... we wait for about a half hour to 40 minutes while it slowly releases. Once it's done, I switch that line with another saline syringe, flush the line again - and then use a heparin syringe (which basically is used to prevent clotting over the next 24 hours until we flush it out again.) I push that through and then I put the wrapping back on it, put long sleeves on her and we're done!

She is actually getting really comfortable with it. It used to be a large production every time we had to do it, Andrew had to help me hold her down so she didn't squirm away, and she would get really anxious. Now she tells me when it's time (we do it at the same time every night) and she helps me. She counts for me, tells me whats next, etc...

And when we're done with the saline syringe she always asks for it so that she can 'do daddy's medicine' and she sticks it into his arm, or his head, or wherever! I guess it's therapeutic for her....?

It's just the syringe with a flat end so she can't hurt him or anything... but, I love his faces in these pictures.

Emma, the nurse.

I worked most of this weekend, so unfortunately I had to isolate myself for several hours each day to get done what I needed to; but Andrew kept the kids entertained and they had fun. I obviously had to take some time off while Emma was in the hospital so I was catching up a little and doing some testing for an initiative we're working on. On Saturday Andrew and my dad took the kids to a car museum that I had gotten tickets to on Groupon a while back.

Definitely right up Drew's alley; but I think Emma had fun also. Andrew said they had all the originals of cars that were in movies, the bat mobile, back to the future car, Herbie, Fast & the Furious, Indiana Jones, etc...and they also had really nice restored old cars that were for sale.

So that was a fun Saturday afternoon activity for them.

Drew & the GhostBusters car

Emma, the little race car driver. This one cracks me up, with her tiny little head sticking out of it. 

Lightning McQueen! Drew's favorite! (That's what he told me when they got home) He was so excited to tell me all about it. I love the fact that they can talk enough now that they can tell me what they did during the day, and we can have little conversations. It's so fun to watch them develop into little people. It's also really fun to hear their version of things. Our nanny will tell us what they did during the day and specific stories, and then to hear it from their perspective is so entertaining.

Emma driving the Flinstones car.

On Saturday night my parents took us to dinner, for an early birthday for me. We went to an Italian place close to where we live. It was good... even though I realized half way through eating my dinner that it wasn't what I ordered! (Hah... Must. Get. Sleep.) It was still good though!! I ordered fettuccine Alfredo with chicken and after eating half of it realized that what I was eating was actually a chicken marsala wine based sauce with pasta.
And then on Sunday I also had to work for the majority of the day. Andrew and the kids went to play at the park and then he went out to watch Football games and I was able to spend the last few hours of the weekend with my munchkins.
I have to admit, I have been really bad at cooking dinners the last few weeks. Usually I am all about it, and we always have a homemade, healthy dinner 95% of the time. Well, this last week it was pretty much either take out, or I made quesadillas, grilled cheese, or something quick like pasta.
I have promised myself (and Andrew) that I'm going to be much better about it this week. I was just so tired by the time dinner time rolled around that it was the last thing I felt like doing. I didn't have any energy for it.

I was working on my laptop a lot this weekend, and at one point I looked up to find this:

(Both of them busy working on their own little laptops)

Emma had a blood draw yesterday, and based on the lab results from yesterdays blood (Which I'm waiting to hear today) we will know where she stands with her #'s and whether we need to continue for a little while longer, or can get the picc line pulled. I hate the stupid thing, but I honestly don't mind keeping it for a little longer if it means they don't have to stick her with more needles. The nice part about the line is that when they need to draw blood they just hook it up to the existing line and she doesn't even feel it.

But, I am waiting to hear some results today, so I'll keep you posted! Fingers Crossed!!

A few pics from todays cookie making session...

Until next time!! xoxo

One Step at a Time

Yesterday Emma had some follow up appointments. We're looking good!! The doctors were really pleased with her improvement. Both visually, her demeanor and energy, as well as her lab results. She still has a ways to go to reach 'normal', but she is drastically improving, and moving in the right direction. Our little fighter.

She took a snooze on our way home.

Some of her numbers and facts - -
A few of the levels they have been monitoring closely, her Creatinine levels, which measure how well the kidneys are functioning. Normal for her age is .5, at one point Emma was at 1.8. She is currently back down to .6.... So, that's quite some improvement!!
Sed rate (erythrocyte sedimentation rate) reveals inflammation/infection in the body. It is more or less an infection indicator. Normal is below 20. At one point Emma's was exceeding 120, but we didn't know the actual number because they only measure up to 120. So, basically; she was off the scales. Currently she is under 80. So, well on her way in that area. But, some room for improvement.
And, CRP (C-reactive protein) again, an infection indicator in the blood. Normal is below .3, she was at 32 in the hospital, and is currently at 1.4; So really good improvement there also.
They are really pleased with her current lab results, her numbers have improved/dropped quicker than they anticipated. We will continue her IV antibiotics for at least another week and they will test her blood again Monday, and we will find out Tuesday where we stand after another week. She may even be able to have her PICC line removed next week!! But, I'm not rushing it... we will do whatever we need to do to get her 100% better, if that means keeping her on the IV longer. I'm actually getting quite efficient at it!

Yesterday, on our way to the hospital we stopped to have lunch with daddy.

She was very busy coloring her menu.

We've all been battling a cold. Me especially... I actually think I started this one, unfortunately. Usually the kids give it to us. Well this time, I spread the love!

I am just beyond tired, haven't been sleeping well, have a lot going on - - a little on the stressed out side and spent a long time hanging out in a hospital, so I'm not surprised it caught up to me.

I actually think I was less stressed out while we were in the hospital because I just put life on hold completely. And really didn't think about much other than Emma, her tests, results, and day to day hospital stuff trying to get her stable. But now that I'm home and back to work, and have to deal with life catching up to me, it's a whole different ball game! Emma is obviously still the priority and her improvement is where our focus is, but life does have to go on.

So for now we're just taking things one step at a time, one day at a time....

Since we've been home...

Andrews parents stayed a few more days after we were discharged from the hospital.

Emma reading with Papou

Drew reading with Papou

Our families and friends were SO helpful during all of this, and we are extremely appreciative and grateful for that. But there is also a large part of me that finds peace in knowing that we are at a place now that we can manage everything on our own again. (for the most part) My mom has been taking Drew when I have appointments for Emma, and  we have Brianne (our nanny) back to her regular schedule.

We went to my parents on Sunday for football and dinner.

One of Emma's new favorite things to do is help my mom make cookies

Helping stir

Pop sneaking her a taste!

My Bears Boys!

Bears didn't do so well last weekend. Oh well...Can't win 'em all!

On Saturday we went to the BMW Golf Tournament. It was such a beautiful day, the weather was perfect, clear blue skies... not too hot, and not cool. It was really nice.

We have gone the last few years, it's a fun day out. (I will admit that I really just go because we have access to the BMW VIP tents which makes it a much more enjoyable day.) They have lunch, drinks, comfy chairs to sit and watch. We also walked around a bit too - and happened to be walking on a path RIGHT where a ball landed - and what do you know? It was the leader group, so we were on TV. All of the camera guys came running over.

Getting ready for Fall. I haven't pulled most of my decorations out yet - but I started with a few things.

I put this out on the front porch.

I'm still trying to think of cute ideas for Emma & Drew for Halloween. I did get a few good ideas when I brought it up last...  But I'm still debating.

Where has time gone? I was at Costco this weekend and they have Christmas stuff out!! WHAT?! in September? Which reminds me, I have a birthday next week! That snuck up on me a little bit, considering what the month of September has graced us with.

New Moves

Emma's got a few new dance moves - -

(Feeling a little better as you can probably tell!)

A Rough Week

Well, I thought I had fallen behind on blogging a few weeks ago... now I'm definitely behind. With good reason though. The last few weeks of our lives have been complete turmoil to say the least. Over Labor Day weekend Emma had a little fever and was acting crabby, uncomfortable, etc... Just not acting like herself. She then told me that her back hurt, and I didn't like the combination of a fever and her back hurting. (She also threw up her dinner.) So, I took her to an urgent care, being that it was a holiday and her doctors office wasn't open, which actually wound up being a blessing (with trying to beat time once we found out what was going on.) Turns out after several hours at urgent care, getting admitted to an E.R., tests, blood draws, catheters, etc... She did have a blood infection which had also infected her kidneys and the blood infection was quickly spreading and shutting her down. Time was critical. Typically I'm not the type of mom that rushes my kids into the doctor every time they cough or sneeze, but something about this just didn't feel right to me, so I'm glad I made the decision to take her to an urgent care on the holiday. Especially considering she was a totally healthy little girl and had been to the doctors office once outside of her standard wellness visits.
The first day (At urgent care) we were playing around a little bit while we were waiting for the doctor - I was trying to keep her mind occupied. She's not a huge fan of doctors offices.

So, we played with the doctors gloves while we were waiting!
They could only do so much and eventually referred her to the ER.
We went to the ER and that poor little thing was put through a lot - blood draws, catheters (yes, multiple.), tests, etc... and we were admitted. We were moved up to a room on the pediatric floor around 11 pm or midnight.
This is our little princess - with her lamby (her favorite stuffed animal) Daddy's iphone playing one of her favorite Lady Gaga songs, a gatorade and her favorite little blankie.

Making herself comfy,

 
Staring at Daddy <3

Daddy makes everything better.

And... crashed out. Long day.

Within 24 hours of being at the hospital they determined that she needed a higher level of care and transported her (by ambulance) to Lutheran General Childrens Hospital (outside of Chicago) which houses a pediatric kidney specialist. Luckily we recognized it fast, acted quickly and everything was moved along quickly, which ultimately is probably what saved her other organs. She got pretty sick moving into the next 48 hours. She was in a lot of pain with her kidneys and it was heartwrenching to see as a mom. I wished I could do anything to take that away from her.... and you feel so helpless not being a doctor. I think the doctors even felt a little helpless at one point. The antibiotics weren't working, the infection levels were going up instead of down, etc... which is not what they had anticipated after starting her on the IV antibiotics, getting her hydrated, and all of that. It turns out we were working against a few things - not only did she have the blood infection, but it appears she also has urine reflux (where it backwashes into the kidneys and can cause issues) and after one of the CT scans they also found a large mass creating blockage to one of her kidneys, which was creating toxic build up as it wouldn't let it through the filter out. She had a few procedures done, lots of CT scans,
She did lots of sleeping....

That arm is where her main IV line was hooked up initially. They were pumping her full of fluids, antibiotics, occasionally a little something for pain if we were lucky. The problem is that the majority of pain meds have to be broken down by the kidneys and hers weren't functioning well as it was. So adding  more to it would have put more stress on them. Taking into account with little kids you are fairly limited to begin with on what they are able to have... it was really hard. Because she truly was in so much pain sometimes. There were times that I would get really angry. I figured they HAVE got to be able to do something for this poor thing, she is in so much pain. I can not stand to see her like that.

Lamby went through it all with her. She was terrified any time a nurse came into her room (I don't blame her, after the 5th catheter and god knows how many blood draws) They had to monitor her vitals hourly, so most times lamby had to endure the tests first before she would. He even got his own wrist band.

After several days of not eating, they hooked her up to a TPN & lipids IV, which was giving her the vitamins, nutrients, fats, and calories she needed. In order to do that, they needed her IV in a larger vein - so from that point on she had this on her leg:

Now, I don't care who you are... you probably understand how difficult it is to keep a 2 1/2 year old from walking, or standing. So that was a challenge in itself.
We wound up being there for a total of 9 days. Andrew was trying at the beginning to keep as much normalcy in Drews life as possible, so that he didn't feel completely shuffled around, and he would go home at night and spend the night at home with Drew, in as much of a normal routine as possible. However, that wound up being when most of everything went down. That's when the kidney specialist would come around (yes, weird hours... I know. There were nights that he would come wake me up in the hospital room to go over her test results from that day.) And it was hard on Andrew to not be there to hear the news first hand, or be able to ask questions directly to the doctors, etc... They would also come and drag her out of bed at 5 am every morning to draw blood, and after the 4th or 5th blood draw I couldn't emotionally take it anymore. She was terrified, traumatized, you name it. It was heartbraking to have to help hold her down as the nurses did that to her and she would look at me like 'Why are you letting them do this me???' So I had to enlist Andrews help there on out for those things.
She was still a fiesty little thing though. They learned quickly, and always came prepared with a team of 5 or 6 nurses to hold her down for those things, because nothing less would suffice.

Eventually we had a team of specialists working with her (a kidney specialist, an infection specialist, a eurologist, a pediatrician...) and they were able to begin to tackle it.
Things started to look up. She did a lot of coloring and playing with stickers - - and LOTS of movies!

Her brother came to visit and give hugs

And daddy would make her smile =)

listening to some songs on the iphone with dad.

daddy could even get some giggles out of her occasionally.

More visits from Drew

Sleeping with all of her buddies. I would look over at her and she was just surrounded by all of these stuffed animals that were sent to her by people that care about her. This little girl really had so many people pulling for her, and praying for her, and we appreciated all of them!

playing with princesses

beautiful flowers to warm up our room.

They had an outside deck, once she was well enough to go out there, she was able to get some fresh air.

and we planted a little plant!

The child life program was great - they had a huge playroom with every kind of toy imaginable for the kids to play with, they had 'animal therapy' and brought dogs in occasionally for the kids to see and pet, they had different activities depending on what the child is able to do.

Because she was on an IV, everywhere she went she had to have that IV pole/pump. That was a little bit of a drag. But a few days before we went home they did a procedure to put in a PICC line which is more of a permanent IV line so that I can continue to administer her IV antibiotics at home.

She was released a few days ago and can now be at home. Yay!!!

In a few months, once her kidneys have had a chance to heal, we will begin some tests to figure out what needs to be done moving forward. But for now, I'm just happy to have my baby home. And I'm happy that we are all home again... I think Drew is the happiest! =)

Even though I felt bad for him during all of this, I know he was really spoiled, by everyone that had him! He had sleep overs at my parents, went to the store (on a few occasions) to pick out toys, went shopping with Mimi, came to visit his sister, got to hang out with some of my moms friends who spoil him to death... so, he definitely was not neglected. But, I am still glad to have him back.