Shot 2/3 done!

This time with much more success than last time :) I didn't freeze or anything. We had already had Piper's blood taken earlier in the day (with a totally full clinic... kinda freaked me out, so I asked to hide in the back of the clinic) with great success, but she was probably still kinda miffed about that.

Anyways, Matt and I are getting better at getting everything ready and only getting Piper ready at the very last minute. It was done and over with in no time. Nothing even leaked out! Hooray! She might feel better being at home. She recovered pretty fast. But she always does.

So far, there have been no reactions that we can see. Maybe some mild pain, but how are we to know? The heme nurse said that we should only ever give Tylenol now if it is absolutely necessary, as giving it in the "just in case" scenario might mask a fever if she is sick. Boo. We are a bit sad about that, but so far has been ok.

Anyways, all is well. We give her another G-CSF shot tomorrow, though there is nowhere to get blood drawn tomorrow so we will just do that on Monday morning. Then we'll call BCCH to see what levels look like and see whether or not we give her another shot that day or not. We'll go to the hospital that day, too, but we do the blood test first.

This poor girl has been poked far too many times. It kinda hit me a bit today. I am hoping she won't remember any of this. And maybe in my future, I can forget how much all of this has consumed me, too.

Have I mentioned that Piper is now 18 pounds?! Yeah. She gained 3 whole ounces in a week. Not bad. I only know these weights because she is weighed almost every time we go to the hospital and every time for her RSV shot. She's a growing girl!

Shot 1/3: done!

Ok. So I have Piper her first shot of G-CSF. Phewf!

We had our appointment at BCCH in the afternoon (much nicer for baby routine, I might add), when they would check her neutrophil levels again and see whether or not to try the G-CSF. So off I went, with a baby in the back seat and the medication (which we had taken home earlier in the week) in the back on some ice. The medication, if you don't know, is all ready and loaded in syringes. Yes, needles. I mean, the sharps are covered, but otherwise, they are just needles kinda floating around. And have I mentioned that they are expensive? It just felt strange to have to transport these little things, with a teeny tiny amount of liquid in them, but worth so much... and needles! For some reason, it feels wrong for normal people to have needles. Regardless.

We went to pick up Matt from work and we got to BCCH in good fashion.

Blood test done (never fun, but the blood people seem to be getting better at it, though Piper is hating more and more the restraint factor and the tourniquet), we just had to wait in the hematology clinic for the results on the neutrophils.

We ate our snacks and Piper played in the mini-kitchen (so stinkin' cute to see her play like that!).

Our nurse finally came out and told us her levels were back down to 0.14, so we would be going through with the trial of G-CSF. No biggy, I guess, but a miracle could have been nice. We'll save the miracle for another day!

Then to give Piper her shot, which I had done a trial one the other day and it was fine, this time, I froze a little before I gave it to her. I don't know if it was the fact that it had been a few days since that last time, or that it was the "real deal" this time... Anyways, Matt had Piper in lock-down and the nurse was kinda hovering and my head was saying "go fast, go fast, go fast!" and Piper was a-squirmin' like a worm. I had to pause a few times and kinda just shake it off.

I did poke her, just as I was taught: a nice darting action at a 45 degree angle, good and fast but not jabby, then depress the medication in with a steady pace and pull the needle out.

Ta-da! Does Mom get a gold star? It seemed to go fine, a tiny bit leaked out, but I will hopefully get better at this.

Piper didn't seem to have any of the side effects (flu-like symptoms, bony pain) and the evening and night were fine. Both us girls took a nap on the way home (I fall asleep every time we come home from the hospital. It's becoming a tradition), so Matt took that opportunity to go pick up some car parts in Langley. I didn't even know:)

So today, we go to BCBioMed and get blood taken and then we'll give Piper her shot 2 of 3 this afternoon. Let's hope we see these levels go up! Again, this is just a trial, to see how she'll react to this drug, so they know how much to use prior to surgery.

I did hear an encouraging thing from a physiotherapist who works at BCCH, that the kids who get G-CSF (the cancer kids who need it post-chemo), are up and at it 2x faster than the other kids. It just helps them recover so nicely :) That was good to hear.

Ok, this is the cutest thing of late: Piper saying "uh-oh" and trying to put things on her head. Matt is always putting things on her head, but she has just recently figured out that she can reach them, sorta... she can't put them back up there because of the arm to head size ratio, but she is working on it!

Almost 10 months!

Here is a quick little sum up of Piper the last two months. I can tell she's grown big time in those two months. Wow.

Anyways, off to BCCH tomorrow afternoon and we'll see what her neutrophil count is like. We might or might not be going ahead with those G-CSF shots in the next few days.

Yet another mystery...

Enjoy :)

Piper will officially be 10 months old on Saturday.

A poke and a peak!

At the hospital today, I gave Piper a shot of saline, right in the leg, with a real needle. Gold star for Mom! Wahoo! That kid can squirm, but I got it in there and everything seemed ok. Certainly a two person affair.

The thing was, the entire morning, Piper was miserable. I mean, totally and completely inconsolable. She is never like that. You can almost always find something that she likes and makes her better. Not this time. She was a mess.

Anyways, both Matt and I were kinda apologizing for her to the heme nurse who was trying to give us the run down on how to give a needle to a baby (yeah, I kinda wanted to pay attention!), and we thought maybe something was up. She hasn't really been herself for a while now.

It turns out, from her blood test from the morning, her neutrophils are at 1.16! Wow! That is unheard of for Piper-baby. The nurse thinks her body might actually be fighting something and that is why her neutrophils are up like that (they are usually 0.01, or at their highest 0.28). So that kinda puts her mood in check, or at least makes a bit more sense.

So we are holding off on the G-CSF for a few days, as there is no sense giving it to her right now when she has decent levels (they would like her levels to be at 1.0 for surgery). We go back on Friday to see what her neutrophils are doing then. Then, we'll start the G-CSF, probably... or else... it could be that this neutropenia has run its course. I am hardly daring the hope, but you never know.

Right now, we are home after not too long at the hospital (only needed 4 hours of parking), and Piper is taking her fourth nap of the day. Hmmm... yeah, something might not be right. The doctor looked at her thoroughly and nothing seemed unusual, so it might be something he can't quite see, like a sore throat or something. Or those big nasty molars.

Oh man. I am so no ready for molars to come in.

But for now, no more pokes until Friday and we'll see how her blood looks then. We are just retreating into some normalcy as family dwindles away and we are left to ourselves.

Cranky pants.

Nothing too exciting over here. Piper is being a very high-maintenance baby these last few days, and I am not too sure why. It has been rather busy at home lately, with lots of family in and out and tons of long car-rides. Bah.

Piper had her 4/5 RSV shot on Friday, and I am finally connecting with some of the other moms who come, too. One mom, has a wee baby boy (6 months) and he is a cute little guy with a cleft palate, though no cleft lip (hair lip?), so you wouldn't even know. She says when she feeds him solids, it sometimes comes out his nose... then you can tell. But it was really nice to sit and talk about having babies with hospital needs. She was in the hospital for 6 weeks after he was born, as she had pre-ecclempsia and didn't know it, and then he had trouble breathing at birth and la-la-la = not fun. He will have surgery when he is closer to one year old.

We compared visits to BCCH and how we felt about surgery etc. Our stories were both so different, but we were in the same boat, and it was really comforting. She was so normal (as I hope I seemed, too), and we were both surviving with these awesome babies who just need a wee bit of extra attention... but like I said, you would never know it.

Waiting in the RSV clinic with Grampa... they were both so good :)

So, the countdown to surgery is still on. 16 days to go. In between there we go to the hospital on Tuesday for our "training" in how to administer G-CSF and get Piper's first dose, and then the next Wednesday for Pre-Admission Clinic (more bloodwork, sats, ECG and maybe an Echo) and then the next Tuesday is surgery day. It will be here in no time.

Somehow, I feel a little more grown up about the whole thing, as if I've already done it before and know how it will feel. I am still looking forward to all of this being done and getting on the other side of this fence. Alas. Might be a while. And who knows how long this Neutropenia might last. Hopefully just into her toddler years and then magically goes away. Piper is so tough, otherwise.

On another note, any weaning moms chime in, what the HECK do you do when your baby is far too interested in playing and not in nursing? Given, the last fews days haven't been all that normal, but I insist on keeping up nursing until well after surgery. That is the only option. But she is really resistant sometimes and just wants to play instead. Should I be giving her water later or something? I am now pumping, as my milk is already lower than it once was, and I need to keep it up, but I would much rather be giving this baby what she needs straight from the source. Its only the daytime feeds usually... but I say usually. Is everything about to change?

Tips? Ideas?

WARNING: contains booty shots.

Bone marrow: normal. Totally normal.

Big sigh of relief. Nothing too worry about there, though they are still not sure exactly why her neutrophils aren't there. It might just be part of the autoimmune neutropenia of infancy bit. I can live with that. I think.

Anyways, talking with the hematology nurse today, she said that we will go ahead with the G-CSF trial, starting next Tuesday. We'll go in, say hi, and I'll try to talk some about whether or not they even can know more about her neutrophil count, and then we'll get on with the nitty-gritty.

They will take some more blood (oh joy) and then maybe the nurse or the hematologist will administer the G-CSF in "the fatty tissue on her thigh" and then... wait for it... they are going to teach us how to give Piper shots at home! Ahk! This way, we won't have to come to BCCH for the next two days to get a wee little poke and then go home. Of course, they would let us do that, but there is this option. I think I feel ok doing it. But we'll see.

Thus begins the trial, to see how Piper does with the G-CSF. So, the next day, we can go to our closest BCBioMed and get more blood drawn (oh joy, again) and BCCH can get the results and see how things look. Then they can know how much to administer each time, and possibly, how much she'll need before surgery. So, day 1 of the trial begins on Tuesday and it will run until Thursday. Just 3 days, but that should tell them enough.

So one poke in the thigh and leg every day for a few days. Poor baby skin. We'll see how we do. I know a friendly neighborhood nurse who would come and rescue these poor parents if need be.

Anyways, here are some shots of Piper's bone marrow "wound". Kinda an overstatement.

The red on there is just iodine, not blood. And the bump under there is just gauze to keep pressure on the poke hole. Too bad they put the water-retaining sticker right over her bum-crack because poop definitely got in there, so we had to cut it a bit. Just kinda gross.

And there is the poke itself! Nothing to gawk at really. Just a cute baby booty.

Piper has been really normal, too. Nothing of note to speak of. Sleeping pretty well, eating awesome and nursing still. She seems so normal. I am just so glad she won't remember any of this.

Oh, and I am nearly certain she grew a bunch last night. Today she seemed much taller and heavier. How is that?

Bone Marrow Biopsy Day

All times approximate...

• 5:55am: Piper wakes up crying, having last fed her at 4am (before food cut-off), and is not able to be settled.
• 6:00am: we decide, we might as well wake up and go, as we can't feed her, or calm her down and at least she will be distracted in the car.
• 6:20am: heading out the door with hospital bag packed for all three of us. Piper stays in her jammies from last night. Mommy and Daddy wish they were still in theirs.
• 7:15am: arrive at BCCH, wait in the parking lot with a happy baby in the car.
• 7:30am: decide we can probably go in and check things out, and it turns out, lots of people were already there, so we are glad we didn't wait until 8am, when we were scheduled. We were given some papers and an arm band for Piper and sent down the hall.

• 8:00am: in the "play room" with a few other groggy looking kids and parents. This is the official "Heme/Onc" waiting room, though the other kids we saw were definitely "onc" kids. A few kids of a few different sizes, all with just a wisp of hair on their heads, but otherwise, looking relatively happy. (Have I mentioned before how much I don't feel great being in the oncology clinic? Is that terrible of me? My heart groans for those parents and kids, and I know cancer isn't contagious (geez!), but it just turns my stomach into knots that we are this close. I pray for those kids every time, and I pray that my kid will never get close to that diagnosis.
• 8:30am: we are sent into a room to wait a bit, meeting our awesome nurse for the day (seriously, top-notch!) and did some weighing, measuring, temp and blood pressure. Piper is not fan of any of those, but for some reason, the thermometer under her arm gets her really mad.
• 8:45am: the IV specialist lady comes in, with a cart full of goodies and a smile on her face. I honestly don't know how she does her job: poking unwilling kids all day. Brave soul.
• 9:30am: after the IV lady trying twice to get an IV in ("I always get it on the first try!"), she called in the uber-specialist: the lady who can put IV's in premmie babies. The real big-guns. This lady was friendly, but a no-nonsense sort of friendly: no coochy-coo sounds or anything, just polite and to the point. I kinda liked that.
• 9:40am: IV finally in, after, even the superwoman IV hero was "a little concerned there, for a second". Yeah, so was I when they mentioned "has she ever had an IV in her scalp?". Gulp. No thanks. Anyways, IV was in and they took some blood and away they went. And our long wait of the day begins (there is always a long part in every hospital day. There are fast action parts, when people are running in your room every few minutes, but then there are parts that just draaaaaaag)

• 10:45am: after trying to set up a movie, and trying to let Piper sleep in her sling and both Matt and I having a snack (trying to keep it out of sight of Piper, as she eyed us up pretty greedily when she saw us eating), and Piper nearly rolling off the bed, stuff started to happen again. The hematologist came in to say hi and to discuss the G-CSF we've talked about and to see if we have any questions. Our nurse was getting us ready to go, and then a hematologist resident gave us a rundown of how things would look for her procedure. The anesthetist came in, too (the same one for her heart cath- and he recognized us, too! He was really great) and double checked everything.
• 11:00am: away we went, just around the corner to the little procedure room. We got to carry Piper right in there, with the whole room full of staff, and we even got to see them put her sleepy drug in. She got a little floppy and her fussiness was just sorta a slow whine and then she was sleeping. A nurse was right there, just stroking her face and was right down at her level. While all of that was going on, we signed some sort of consent form that I am pretty sure I understood, and then we were saying good-bye to our Piper-baby.

• 11:25am: having waited in the "play-room", equipped with a 24 inch Mac, I might add (darn that 3 year old playing on there!), we were called to our new room and they wheeled Piper in the next minute. She was just a pretty sleeping baby, on her side, with little oxygen tubes placed just up her nose (nothing invasive). The wait time was so small, we didn't even really have time to miss her! It was great. Then it was just waiting. Our super-nurse had to be there when she woke up, so we got to talk a bit while Piper was sleeping (which, she hadn't slept since she woke up at 6am this morning, so we were prepping for a long nap). Every time we have a great nurse, they make me want to be one! So bad. Argh. She was really inspiring.
• 11:55am: Piper wakes up! Not too happy at first, but crying, which is good and breathing all right. Her sats (saturation levels) were low (like 79-88%) for her, so we had to wait until they were at a good 92%+ until we could go home. We tried giving her a bit more oxygen with a little mask just close to her face, but she didn't like that much. She was breathing fine, they just want to make sure she is breathing enough and getting enough oxygen through her body. Anyways, I was finally allowed to nurse her, and her sats did go up a bit, but still just high 80's.
• 12:20pm: having nursed her, she was kinda antsy, so we put her back on the bed and let her play and then started feeding her some food and that made a big difference. We had our lunch too, so we were all a little happier. By now, Piper's sats were up in the mid 90's and staying there, so that was a relief. She didn't seem the least bit worried about her IV or her big band-aid on her low-back/upper-bum.

• 1:15pm: discharged and ready to head home. Everything looked good, the anesthetist came back in so say hello, as did a hematology nurse. With Piper IV out (replaced with a great Curious George band-aid) and our bag packed once more, we were set on our way home.
• 1:45pm: stop off in Ladner at McDonald's for ice cream. Totally hit the spot.
• 2:20pm: home and so happy to be :) Piper really didn't seem to be bothered by her wound, which is nice. She has cried a little bit for no reason, but nothing we can't settle. I took a nice 2 hour nap, and Piper took an even nicer 3 hour nap. We were both better people for it.

Now we just wait until bath-time tomorrow to take off her bandage and then we can call the hematologist on Wednesday for some results. I am just really hoping for some more concrete answers, and not more questions.