The new chair

Last week I got a new chair made especially for me! Uncle Brady started building it while I was still in the hospital. Then he and Dad finished it up the first weekend we got home. I love it.

The design allows me to sit upright while in my hip harness (or potentially in a cast in the future). They made the tray so it slides out, then I get buckled in, and the tray slides right up to my chest. It's so cool.

Here you can see how I sit in it while wearing my harness. The angle of the picture make it look like the tray slopes away from me, but don't worry, it's totally flat!

 

Hard at work.

 Hi, thanks for visiting. I can offer you a burp cloth or this colorful thingy. 

Take your pick.

Later that same day

Some of you may be wondering why it took us so long to think of this...

No need for nannies or childcare in the future. Keillor can take care of me!

Five months

Sorry, folks. I meant to post these yesterday. Here are my five months photos with Keillor...

I'm about 15 pounds now and somewhere around 24 inches long (it's hard to get an accurate measurement in my harness). I enjoy using my hands to grab stuff. And once I have a grip on something, I love to try putting it in my mouth. I continue to smile a lot lately and I've even heard myself giggling a bit.

Early Easter present

What the?! We had one of these at the hospital and now we have one at home!

 Awesome!

 Um...I don't mean to be rude, but you can't take pictures of me while pulling the wagon, so let's put down the camera and get this thing moving.

Grandpa's visit

Grandpa stopped by Denver on his way from Arizona to Montana last week. He even got to take care of me while Mom and Dad went to work!

I clearly didn't enjoy it at all. 

Goofing around

I love to play games with my folks. When I know my bottle is almost empty, I like to milk it for all it's worth. Get it? Milk it?! Here I am hamming it up for the camera while Mom tries to finish feeding me.

NCAA

It was Dad's turn to come home at 2:00 pm today to give me my antibiotics. For some reason he said I had to be quiet because he was trying to get some work done. At least he gave me some toys to occupy myself.

Also, something called a Badger lost in some sort of game today. He said it was disappointing, but that we still have hopes for a Buffalo. Whatever that means.

Reading!

Reading is more fun when it's with grandpa!

Beans

Keillor tells me that there aren't really beans inside my new bean bag chair. He says he would have ripped it open to eat them by now. I don't care. All I know is it's super comfortable.

Tomorrow is my first day with the nanny. We just went to meet her and she's super nice and I'm going to have a ton of fun with her. Dad is trying to assuage his guilt of leaving me by buying me a gift. No idea what it is, but it's coming in the mail tomorrow!

I'm back, get out of here, Dad!

Jeez! I step out for a while and Dad takes over. Holy cow. DEPRESSING!

Just because I spent a few weeks in the hospital it doesn't mean he had to go posting all sorts of stuff about abscesses, surgeries, tubes, antibiotics and whatever else. Don't worry, I've changed my password so he can't get back in here.

Speaking of Dad, as of this morning I have two more days with him. He goes back to work on Wednesday and I head to the nanny's for a couple months before starting daycare. But first there was the weekend. We had the whole family in the house for the first time in a long time. Kind of weird.

We went for a walk yesterday morning and I fell asleep in the Baby Bjorn. Rather than wake me up, Mom thought Dad should just lay down with me.

Nice way to nap until you wake up and have no idea what the heck is going on. 

At that point it's ok to cry (which I did).

Getting back into the swing of things

What a great night. Tess was up for much of it, but so nice to have the whole family under the same roof again. We spent yesterday afternoon and evening figuring out how Tess likes to relax and play now that she's in the harness.

Turns out that her new favorite toy is the swing we got her in November (yes, the same one she hated at the time). We've boosted her up with a few small pillows and she's good to go.

Thank you to all of our readers over the last three weeks. Our blog will be returning to regular programming shortly which means we'll get back to only the grandparents and a few other random people checking on the activities of Tess and Keillor.

Surrounded by toys in her swing.

One last fact that we just calculated: Including the three nights we spent in the hospital when Tess was born, she has spent 17.5% of her life in the hospital. Ridiculous.

Together again

Friday, March 15, 11:05 am.

Afternoon hip update

Dr. Booker stopped up for an afternoon visit. And he brought some ideas with him.

Typically after an open hip reduction (the procedure Tess had 9 days ago), the hips would be put in a cast for weeks. We couldn't do that because the cast would have restricted her abdomen which was causing other problems at the same time.

For the last week, Tess has been in a Rhino brace. The brace makes it hard to dress Tess (which we haven't even done yet) and it really pissed her off during diaper changes. So Dr. Booker brought a Pavlik harness up to try this evening. This is the same harness Tess wore for a few weeks back in November. It didn't work then because her hips weren't in socket, but they are now, so we'll give it a try. The harness will make diaper changes easier and it'll give Tess a little more freedom.

We just had an ultrasound done on both hips and we'll reassess things in the morning with Dr. Booker.

Still on target for a Friday departure!

One more night

Tess wants to make the most of her last full day here (we hope) so she woke up a little early this morning. After a quick breakfast, we were off on another adventure.

Wagon ride! Can we get one of these at home?!

 Yes, Tess. After nearly three weeks in the hospital? Anything you want. 

Question: Can you spot the major difference between yesterday's wagon ride on the left and this morning's ride on the right? [Answer is below]

We haven't seen our team of doctors this morning yet, but one stopped by just to say hi. We're still on target for busting out of this joint tomorrow. Tess and I will be assembling her new car seat today (the new one allows her to be a little more comfortable in her brace). 

Today's big adventure

It's a bit blurry, but hopefully you can tell Tess is giving a little smile in this shot:

The smile is because she skipped her mid-morning walk in my arms in favor of a ride!

Everything else is going well. Tess is nearly back to her normal diet. We're on track to getting out of here on Friday as long as she keeps up the good eating. We should lose a couple of the tubes connected to Tess this evening when they officially remove the nutrition supplements she's been on for the past few days. Then we'll be able to enjoy a wagon ride without dragging the stand along with us!

Cry baby

Major trauma yesterday: I nicked Tess' finger while cutting her nails. It was the loudest crying we've heard over these last few weeks. And that's saying something.

Sure, the whole-finger Bandaid is a bit overkill, but Tess seems to really like it. 

Friday?

We are sick of the hospital.

I put Dr. Rex (the doctor who is ultimately in charge of Tess' care) on the spot this morning and asked her realistically when we can get out of here:

Andy: "So, let's talk about leaving...I know she needs to get back to her regular diet before we can    think about that..."

Dr. Rex: "Yep, I think if we get her on a little breast milk today and then ramp up the quantities over the next couple days, we're looking at Friday or the weekend to get you home."

Andy [with a straight face]: "Cool. Thursday or Friday sounds great."

So that's our target. Tess enjoyed her first breast milk in over a week about an hour ago. We'll continue feeding her small amounts today and then slowly ramp it up tomorrow as they dial back the nutrition she's receiving through her PICC.

Dr. Booker just stopped by for a while. He fit Tess with a new slightly larger brace for her hips. It seems to be a little more comfortable for her.

Tess hasn't received morphine for over 36 hours now and only needed one does of Tylenol last night. All signs point to her looking and feeling a lot better.

Still making progress

Tess wanted to give the update for this morning...

Breaking news

About 45 minutes ago, the surgery team came stampeding in. I find them a bit rude usually (the nurses tell me I'm not the only one with that opinion), but today they brought good news.

The news: Let's pull that tube out. And let's see if she wants to try eating. Oh holy crap we were excited.

So that tube came out, the tape and other sticky stuff came off her face and we have one super happy baby.

She just finished drinking one ounce of Pedialyte (sort of like Gatorade for babies). If that stays down nicely, we'll get to try breast milk later tonight or tomorrow morning.

Way to go, Tess!

 One minute after the tube was pulled.

Posing with some of her new friends. 

The tiara was from the visiting Irish dancers that came by earlier today. I think it make it look like she's ready to vote in the conclave with the other cardinals.

Once again, Tess is in charge

I woke up at 6:00 am to the sound of Tess puking. She did it again at 8:00 am and then again at about 12:20 pm. That means the NG tube stays in for another day. Dang it. Each of her vomiting episodes was preceded by a little cough so we're hoping that it's just a sensitive gag reflex that is causing the actual vomiting. 

So now we start the clock over again. If there's no puking by tomorrow morning, then the tube comes out. At that point Tess will get to try drinking some clear liquids and then hopefully some breast milk.

The wait is agonizing.

The good news:
Tess pooped again at 4:00 am. The ileus in her bowels has resolved itself and things seem to be working well. Her bowels continue to sound great.

Her blood lab work came back and it looks good, as well. The inflammation marker (CRP) is down to 3 (it was in the 20s at the height of Tess' infection) and her white blood cell count continues to drop.

All signs point to a recovery soon. It's just a matter of getting this kid to the point where she can eat on her own.

Action

Lots going on recently!

Denise arrived to the hospital last night and was greeted with a nice big smile from Tess. And she's smiling more today, as well. We lifted her out of bed last night a bit and she clearly enjoys sitting upright and being able to look around. We're doing more of that today, too.

And the other big news: Poop! We now have proof that there isn't a blockage in her bowels, That means she's on her way to getting the NG tube removed later today (we think).

As always, we'll update right here when we have more news...

Life goes on in the hospital

Watching her first Twins' game on Mom's iPod...

FYI: The orange tape across her top lip is holding the NG tube in place. That's hopefully coming out tomorrow.

Just hanging out

I don't really have anything interesting to share this morning, but our readers have come to expect updates, so here you go...

We're still in a holding pattern waiting for Tess' bowels to get going again. Heard a few farts last night and this morning and the doctors are loving that progress. Seriously, I almost expect them to cheer when I tell them that I heard a fart (from Tess).

Our main doctor team said they'd like to get Tess' NG tube out today. That would mean she'd get some breast milk again and that would make us happy.

Dr. Booker visited this morning to check on her hips which continue to look good.

Diaper changes still really upset Tess, but we're not sure if that's due to hip discomfort or abdomen discomfort. Either way, she absolutely hates them. We've been timing them with her occasional dose of morphine to make things easier on her.

Nothing to drain

No paracentesis. We just returned from the ultrasound and there's not enough fluid in Tess' abdomen to drain. We haven't seen our regular doctor to confirm the approach going forward, but I'll post that as soon as we hear. I believe it'll be just waiting for Tess' bowels to get moving on their own.

One additional bit of information: We hope to get Tess' NG tube removed tomorrow to see if she's up for eating on her own. If not tomorrow, then the docs seem optimistic that it'll be Saturday.

Tess will be a future case study

Lots of updates from the past 24 hours. I apologize about the posting delay, but we were waiting for the latest news before sharing what we know at this point.

They have now confirmed that the infection from her hips traveled to her abdomen. One of the infectious disease doctors sat with a radiologist for an hour and a half last night and proved that the infection was able to travel through Tess' inguinal canal to her abdomen. That canal is closed on older children and adults, but still open on babies of Tess' age. Our main medical team couldn't say enough amazing things about this particular infectious disease doctor (I'll get his name for future posts). He's practiced all over the world and they're so happy to have him here at Children's now.

Tess' abdomen has grown a bit over the last 24 hours and that's the main focus now. She'll be heading down for an ultrasound in a little while to see why that abdomen continues to grow. After the ultrasound, one of two things will happen:

1. If the ultrasound shows no additional fluid compared to this past Tuesday's ultrasound, they won't do anything. That would mean it's gas in Tess' abdomen and that'll work itself out over the next few days.

2. If the ultrasound shows additional fluid, they'll do a paracentesis. That's a bedside procedure where a needle will be inserted into Tess to draw some of the fluid. Two main benefits: Relieve some of the pressure that may be causing her pain and see what's in that fluid. Examining and testing the fluid will help the infectious disease team determine a targeted antibiotic for Tess. The parecentesis would be drawing fluid from her abdomen, not her stomach (the NG tube is already keeping that empty).

Dr. Booker visited this morning and Tess' hips are looking good. The incisions are healing nicely and the brace is working out well. I'm sure Tess is wondering why her legs are fixed in such a crazy position, but she'll get used to it in another day or two.

We also just had a visit from a doctor who is focused solely on Tess' pain. They're trying to figure out what is causing Tess the most discomfort and then how best to target it. More on that in future posts after we hear their recommendations.

On a separate note: We can't say enough about what wonderful friends and family we have. Your notes, calls, texts, visits and prayers are all so appreciated. I'll stop right there because that's an awful lot of sharing for this Norwegian Lutheran. Denise would probably use the word love several times while expressing the same sentiment (and I would agree with her).
 

Focused on the belly

Tess is a champ. She slept for solid chunks last night, but woke up occasionally in obvious discomfort.

The focus today has turned to her distended belly. All signs point to an ileus in her bowels which is a fancy way of saying that part of her intestine is taking a break. It's common after anesthesia and Tess has had a lot of that lately. Our team of doctors, the general surgeon team, and the infectious disease doctors all think it'll work itself out. As one of the infectious disease doctors said, "We just need one bowel movement and she'll feel so much better."

As for now, she's on some pain meds and relaxing. Her NG tube is still sucking her stomach contents out (it's really only bile and gas) and she'll be receiving her nutrients and hydration through her PICC. We also have one more x-ray

Our team of doctors think the belly issues are probably something that traveled up to the abdomen from her abscess and hips.

She won't have any more blood pulled for testing today because the docs are worried about the amount they've already taken over the last 10 days. So Tess gets a little break from that.

Her hips are fixed in her brace and we're learning how to deal with diaper changes today. I'll ask Tess if she's ok with me posting a picture of the brace later.

Gall bladder and liver

The doctors just stopped in to let me know that they did the ultrasound earlier to look at her gall bladder and liver. Both of those organs look perfect.

Tess is amazing

It'll be interesting to see what Tess' personality is like when she's older. I'm guessing it'll be one where unfortunate things don't bother her as much as they bother others. I say that because if I was in her position right now, I'd be flat-out pissed. But she's not. As I type, she's in her little bed sleeping. I hear a groan every few minutes, but for the most part she's fairly calm.

The picture: She's got the oxygen tube in her nose (like you've seen in pictures last week), the NG tube travels from her stomach out her nose and that's taped to the side of her head, she's got the three heart monitor nodes stuck to her chest, the pulse and oxygen monitor on her left finger, the PICC on her right arm, and both legs in a brace that splay them wide open. Her body is swollen again from the anesthesia and the fluids she's been getting all day. It's got to suck big time.

Dr. Booker and Dr. Brazil (his name is really Novais, but let's stick with Brazil since he thought that was funny) operated on both hips. They pulled some "gunk" (Dr. Booker's word) out of both hips. There wasn't any obviously infected puss, but they've sent it all for further testing. The left hip was a little worse than the right. And cartilage was intact, but appeared to have obviously been under some stress. Dr. Booker felt safe saying that there isn't any infection in the hips.

In other orthopedic news, both of her hips are currently in their sockets. The doctors fitted her with a rigid brace that will hold both hips in place. We'll remove it for diaper changes, but otherwise it stays on until further notice. This may be enough to fix her left hip!

Now our focus moves to the recently developed inflammation in her bowels and stomach. We really don't have any specific detail to share. Tess has had two x-rays and an ultrasound of the area today and it doesn't appear to be getting worse. However, there are pockets of air stuck in sections of her bowel. The NG tube will help pump some of that air out of her stomach, but it can't get to the air in the intestines. Really we just need Tess' bowels to kick into gear and start moving it on out. We're hearing lots of theories and potential treatments, but nothing concrete yet. I'm sure there will be lots of developments on this front tomorrow. As I'm typing here I've heard several farts (from Tess!) and that's a great sign.

Rest assured that she is stable, comfortable and resting peacefully (with an occasional cute little groan).

No news

Denise said I had to post something now because in the last entry I said we'd know more in a few hours. We don't know much more, but we received a call from one of the OR nurses about 20 minutes ago.

Tess arrived to the OR at about 4:15. Dr. Booker and his colleague from Brazil (we'll call him Dr. Brazil going forward since I can't remember his real name) spent about 30 minutes positioning Tess and testing the movement of her hips. I'm sure they're actually operating by now.

The OR nurses will try to call us hourly with updates, but they may get busy so it might not be every hour on the dot. 

We'll see her in a few hours

We just left our baby with the MRI folks. She'll go from there to the OR.

It's likely that both hips will be opened and drained. It's unlikely that she'll come out of it with a cast on her hips. She's been having some air in her stomach and bowels and they don't want the cast to interfere with that.

When we see her again, she'll have an NG tube (nasogastric) that will run from her stomach out her nose! That'll be used to pump excess air from her bowels. It should make her stomach area much more comfortable. For now, she's off regular food for a day or two. The prevailing theory is that her stomach issues from yesterday were just a symptom of the lingering infection.

At this point, Tess has learned enough to teach a med school class.

Back to the OR

Good news and bad news this morning.

The good news: Tess stopped puking last night at 11:00 and then ate a bit this morning at 7:30.

The bad news: Tess' inflammation markers have gone up again. Our information is changing by the minute, so I'll tell you what we know now and update you as we learn more.

The CRP (C-reactive protein) is the measure they use to tell if there is still inflammation and potential infection inside little Tess. Before they drained the abscess last weekend, Tess' CRP was at 20. It's slowly come down over the week to a low of 3 this past weekend. Today it climbed back to 8. This set off all sorts of warning bells with the medical staff.

Dr. Booker's belief is that there is some infection still lingering in Tess' hips. He also found Tess to be much more agitated when examining her hips this morning. They're still exploring if yesterday's stomach issues could cause the CRP to climb, but that's unlikely.

What now? Well, Tess gets another MRI early this afternoon and then into surgery again. Today's MRI will be compared to Saturday's MRI to see what has changed. If the fluid levels have stayed the same or increased, that would also be a specific sign (other than the CRP rising and her hip pain) that they need to get into those hips.

They're going to operate on Tess' left hip to clean out all the fluid they saw on Saturday's MRI. The fluid wasn't a concern on Saturday because Tess was doing so well (feeling great, looking great, CRP decreasing, etc), but now that the CRP has climbed again, that's one of the areas they can target. They'll also examine the right hip's fluid using a needle while she's in the OR. Then they may operate on that one, too.

While they have the hips open, they may also have time to clean out any random stuff that's preventing Tess' hips from getting into their joints. This is a secondary goal, but one they'd like to explore if they're already going to be in there. The end result could be Tess in a brace or Tess in a cast. So back to where we started 12 days ago! But Dr. Booker told us not to get excited about that. It'll just be something they consider while in the OR. He'll be in the OR with a very well known pediatric hip doctor (who we met in his office a couple months ago) and we feel very good about Tess hanging out with the both of them.

Denise and I have several questions to ask Dr. Booker when he stops back up to our room before the procedure. We'll share all of the info as soon as we know more. 

It's just all a tad bit overwhelming.

Minor setback

Well, Tess has decided she doesn't want to go home today.

She woke up at about 4:15 am and ate. Then puked it all up at 6:15 am. She ate just a little bit before going back to sleep at 6:30 and puked it up again at 9:30. Then she started in with the dry heaves around 11:00 am and again about 5 minutes ago. So the puking combined with loss of appetite has earned us another night.

Our team of doctors just made their daily rounds and they think it's probably a stomach bug she picked up here in the hospital. At this point we're letting her sleep. If she doesn't have an appetite in the next few hours, then she'll get a little something through her PICC.

We were so close to going home that the visiting nurse was already scheduled to be at our house at 2:00 pm to show us how to administer Tess' antibiotics from home. I'm the one that jinxed things because I had all of our stuff packed and ready to go by 7:00 am. I won't make that same mistake tomorrow morning!

This kid was ready to go yesterday!

 But not feeling so good today.

Chilling out today

Not much to update, really.

We're having a good day so far. Several doctors have read the MRI results and there's nothing that concerns anyone. All signs point to getting out of here tomorrow. Tess is in a good mood enjoying her toys and food.

It sounds as if we'll receive a ton of instructions later today and tomorrow on how to maintain the PICC at home. There will also be nurse visits to give Tess her antibiotics for the first few days. It sounds as if we'll have a variety of doctor visits over the next couple weeks, too. 

Again, not much to share today, but tomorrow is shaping up to be a big day.

Looking good

Dr. Booker just left and the MRI looks good. The radiologist has yet to issue her official report, but Dr. Booker didn't see anything in the abscess area or hips to worry about. So the plan for the next two or three nights is to monitor Tess and continue her antibiotics. We'll hopefully get to go home Monday or Tuesday although no one has officially made that proclamation yet.

Who is that masked woman?

Tess is currently in with the MRI folks. We'll see her in about an hour and we'll post any updates as soon as we hear anything.

Special attire for the walk down to radiology.

MRI tomorrow

One last quick post to let you know that Tess' MRI is at 1:00 pm tomorrow. If they find some lingering infection, they'll need to head into surgery again to clean it out. We're thinking positive thoughts that it's all gone and that we'll get to go home soon!

As one of Tess' favorite bedtime book ends, "Good night and we'll see you in the morning."

Quit PICCing on me

Well, the PICC is in, but that's it for today. MRI will be tomorrow. Not sure when yet. Blood was also drawn to monitor her inflammation markers and white blood cells.

Grandma is currently singing with Tess. D and I are about to play some cards. Just hanging out and waiting for tomorrow. Tess is a bit grumpy, but is really enjoying sitting upright on a lap again.

Busy day so far

Ok, busy morning so far. I made the mistake of sleeping at home last night and I just got caught up on everything.

I received a voicemail from Denise while eating breakfast saying, "You should probably come over soon. She's going for her PICC this morning!"

Here's where we're at:
Dr. Booker examined Tess this morning and she was having nothing to do with it. Same behavior with the other doctors poking around. That got them to thinking they'd like to do an MRI to make sure there's no lingering infection either in the former abscess area or her hip. The only catch is whether or not the MRI is available today. We're still waiting to hear about that, but it may have to wait until tomorrow.

Anyhow, the PICC team examined Tess and decided that they can insert the line without putting Tess completely under. So that's what they're doing as I type this.

Denise said there were several scenarios being tossed around and things were changing by the minute between 7:00 and 8:00 am. Everyone is in agreement that an MRI is necessary. If they find some infection while doing the MRI, then Tess would go straight to surgery while still under the anesthesia.   

In summary: PICC is going in. We'll update you when we know more about the MRI.

Other interesting information that grandparents would like to know: Tess is off of her oxygen and was not hooked up to the heart monitor through the night. So she's totally wireless with the exception of the IV in her ankle. And that'll be removed after the PICC goes in. She also slept for about 8 hours last night.

Trying to hide her smile while playing with Mom this morning.