Thursday, October 30, 2014

Day 18: Recovery

Back to square one.

That's where I thought we were last night, and if you could have seen the commotion in her PICU room, you would have agreed. Natalie was really struggling, and her doctor was very close to putting her back on the high frequency ventilator. Something happened, though...and Little Miss Natalie pulled through.

While it took a lot of work from her doctor and nurses to get her blood pressure, temperature, and sats back up last night, Natalie responded to the support. It's almost as though yesterday never happened! She's back near where she was prior to surgery.

Over night, she started to show she was in a lot of pain, which is understandable, considering the pancreatitis and the surgery. Since she's been on quite a bit of morphine, she had built up somewhat of a tolerance to it. So when she started to show some pain last night, they really had to bump up her dosage of morphine to help her get comfortable. Her heart rate started to spike, because she was obviously dealing with some pain.

This afternoon, she looks comfortable, is breathing well, and she's starting to get rid of some of the fluids she took in last night to help her blood pressure.
Snuggled in with her stuffed animals this afternoon
So, what caused the pancreatitis? That's the mystery her doctors are trying to solve. One theory is an anti-seizure medication she's been on since June, called Depakote. She switched to this medication because she had started to have some really big breakthrough seizures. Depakote seemed to be the answer, because we haven't seen any seizures since. It can cause pancreatitis, though, so to be on the safe side, her doctors are weaning her off of it, and starting a new medication.

Also, now that she has a G-tube, we might also start her on something called a ketogenic diet. Click here for a recent CBS News story on this very topic. Natalie can get that nutrition in a special formula that we can put through her G-tube, and hopefully that will help to control her seizures, alongside her other medications.

Yesterday's surgery was really a blessing in disguise. By opening up her stomach, her doctor discovered what could have been a major contributor to her first respiratory failure last week. You may be wondering why it wasn't discovered before. Well, her body was showing signs of inflammation, but because we knew she had inflammation in her lungs, that was what her doctors were treating.

Her lungs eventually got much better, along with the pancreatitis, so it was naturally assumed that her lungs were the single culprit of the inflammation and the illness. Now that we know she had pancreatitis along with the pneumonia, it makes much more sense as to why she had such a horrible run after it seemed like she was doing much better. Had we not done the surgery, we would not be discussing taking away the Depakote. If that's what's causing her problems, we likely would have returned to the hospital weeks from now for more treatment.
Holding on to her kitty :)
We are so excited that Natalie seems to be recovering well today.

Square one? I think not. Day 18 is a good one.

Wednesday, October 29, 2014

Day 17: Pancreatitis

A friend messaged me tonight saying she was scouring Facebook, looking for a great post-op update on Natalie. I wish I could be giving that right now, but I can't just yet.

First of all, Natalie is doing fine right now...and by fine, I mean much better than she was at about 7:00.

I followed Natalie into the operating room at about 3:00 this afternoon, and we finally heard from the surgeon at about 6:45.

The plan for surgery was to put in a G-tube, which is a tube from her stomach to the outside of her abdomen. In the future, this will be used to get Natalie all of her nutrition (food), as well as her medication. It's much safer than the traditional route down the esophagus, which can lead to aspiration. The second part of the surgery was to tighten up the top of her stomach to prevent reflux, which it's believed was a major part of her respiratory problems. The third part was to ease the path out for food out of her stomach, by releasing some of the muscle at the bottom her stomach. This was to all be done laparoscopically.

Upon entering her stomach, the surgeon quickly discovered massive amounts of inflammation in her abdomen, along with her pancreas. So now we have a new diagnosis: pancreatitis.

Apparently, this helps to connect the dots of what has happened since Natalie's hospitalization began. It may have been the cause of the major respiratory failure last Sunday and Monday. Whether it was or it wasn't, we DO know that surgery today stirred up the inflammation and caused another big respiratory failure.

Once again, she's on much more ventilator support, needs more fluids to keep up her blood pressure, and needs more oxygen to keep up her sats. When she came back from the operating room, it became clear that she may be going back on the high frequency ventilator. After a bit of help, she began to bring her sats and blood pressure back up.
Resting Post-op (and no more NG tube!)
Right now, she's doing so much better, but definitely not where she was prior to surgery. Tonight will be another scary night for us, but hopefully she surprises us all again and recovers quickly.

As for the surgery, Dr. Engum was able to do all three things he set out to accomplish, although the tube cover on the outside of her tummy is just a temporary cover, but that's small in the grand scheme of things. He also had to do a traditional incision for the surgery because of the inflammation. Boo.

What caused all of this? Did the pancreatitis lead to the respiratory issues? Did a virus, aspiration, and pancreatitis all come together at the same time to lead to the hospitalization? That's what we're trying to figure out right now.

The most important thing is to get her through this setback.

Day 17 is nearly done. Bring on Day 18.

Sunday, October 26, 2014

Ups and Downs

Let's start with the really fantastic things about today:

1. Natalie's morning X-ray was awesome! It looked so much better than yesterday's cloudy lungs. She is starting to show some improvement in the areas I talked about yesterday, where there was atelectasis, or collapsing of the lung.

2. Her breathing has improved quite a bit in the past day. She's doing more on her own, and her sats have been near perfect, or even perfect at times!
100% on her sats! Yippee!
3. She no longer receives nutrition through an IV; she is now tolerating having nutrition in the form of Nutren (a product similar to Pedisure) travel into her stomach through her NG tube. Getting her tummy moving again is a big step in her recovery. It will help to provide the strength she needs to get her lungs back in shape.

TPN - her IV nutrition - is no longer needed. Her daily bag of "Mountain Dew" costs a pretty penny, but whatever isn't used goes down the drain, literally. Ouch.
4. Natalie's coughing up so much more mucus and secretions, thanks in part to the MetaNeb, which she has been using for the past few days. It pushes air through her breathing tube in short spurts, along with her albuterol treatment. Here you can see the MetaNeb in action:

This treatment usually results in a good amount of mucus traveling up through her breathing tube, which has also resulted in a nice X-ray today.

5. Natalie's starting to require less and less support from the ventilator. Tomorrow, the plan is to turn down her PEEP. Don't ask me what that's been explained many times, but I still don't completely understand it. What I do know is that that number is 8 right now, and her doctor says most kids don't get off of the breathing tube until they're at 5. So, if she goes down one a day, maybe we can hope for Wednesday for her to get off of the ventilator? Who knows? I'll hope for that.

Now for the not-so-fantastic things about today:

1. Coughing is really difficult for Natalie, not because she can't cough, but because it's not comfortable, and most likely hurts. She's starting to fight back now, and show her spunky self to me and to the nursing staff. Backing off of her sedation and pain medication is important, because she needs to start working harder to breath and strengthen her lungs, but it's not easy seeing her struggle through her coughing fits, even though I know they will help her get off of the breathing tube. If only I could take on all of this for her...
My daily view as I lie in bed with Natalie - there may be lots of tube and tape, but all I can see is that angelic little face.
2. Her tummy is having trouble "restarting" if you know what I mean. Morphine can slow everything down to a stand-still. We need to start seeing some progress in that area because her tummy is getting so bloated!

3. This afternoon, Natalie started spiking a fever...enough for her doctor to call for blood and sputum (mucus) samples. She has a breathing tube in her lungs, and two separate lines in her veins (the PICC line in her arm and the central line in her leg). All three are invasive, which means they are susceptible to infection. It's likely that she has grown a bacterial pneumonia from having the breathing tube in for over a week now. If it is, they'll culture it and find out which antibiotic will work best to fight it off.  (No results just yet.)

So that's the latest report on the little lady. Now for the other things going on around the place.

This morning, I took a little walk outside of the hospital. It's beautiful outside. The crisp morning air almost made me cry. It smelled so good and felt so good. I took a huge deep breath in and imagined I was taking it in for Natalie. I closed my eyes and imagined the day when she can breathe freely, and breathe something other than hospital air. I want to wheel her outside and let her feel the sunshine on her face again. Natalie is blind, but can see light and dark and shadows. When the sun hits her face, she looks up and often smiles.

I walked down the street to attend the Catholic church a block from the hospital. I thought it was called St. Anthony, but apparently it's St. Mary's.
A beautiful fall morning at this beautiful church down the road
Therefore, the Mass times I had Googled ended up being wrong, and there was not a 9:00 a.m. option. I was 40 minutes late for the 8:00 Mass, proving that I'm late for Mass, even without my children. (I ended up driving to St. Anthony and arriving a couple of minutes late, of course!)

Many people ask how I've survived this so far. First of all, I'm not the one who is sick, so it's pretty easy for me. Also, I drink lots of coffee. However, Dunn Bros...I'm not so sure I like you.

My days here are pretty uneventful now, which is a blessing, but it also makes it pretty boring. Perry and the boys went home on Wednesday night. I wanted to get them back to their daily routines, and it was time for Perry to get back to work. I miss them so much...I feel like I haven't been a mother to Calvin and Dexter for so long.

So now mostly I just hang out and snuggle and hold Natalie's hand, or chat with the nursing staff (they're awesome!--much more to come about them in a future post).

Yesterday, I started to get a little depressed about the situation, and my friends back home must have picked up on that, because they drove to Fargo for a surprise visit!
My friends, Maria, Trish, Stacy, and Mandie. They're the best!
Just seeing them was so wonderful, but they also brought some of my favorite things: Dot's Pretzels, chocolate, and Sweet & Flour pastries, among other things. I'm so blessed to have this amazing group of friends! A few of them couldn't make it today, but I know they wished they could have been here.

So, that's all for today, but of course there is much more ahead tomorrow. Stay tuned...

Saturday, October 25, 2014

The Slow Road Home

What day is it? I have no clue. I'm starting to lose track of time here sitting by Natalie's bedside. It doesn't really matter, though, because at this point, Natalie has her own schedule of when she wants to return home. Whether it's five days, a week, or two weeks from's all in her hands, or maybe more specifically, her lungs.
So sleepy, but looking more like herself every day
The past two days have been great for Natalie. She remains on the ventilator, but her doctors are slowly making changes to her ventilator settings to require her to to a bit more work. One of her doctors described this stage as "lifting weights." Her lungs were incredibly sick, and are on the rebound, but they need to start functioning like normal lungs again. They need to slowly start lifting the weight and getting stronger, until she can do it on her own. 

Each morning, she has an X-ray in her PICU room to examine her progress and to check on the position of her breathing tube. I've learned what to look for on these X-rays, as they pop up immediately on the computer screen. Before the doctor visits this morning and talks about it, I can guess that she still has a lot of issues with her lower left lobe. That area has some atelectasis, which is an area that has collapsed.

One of the new pieces of equipment recruited to help open up that area of her lungs is this machine:

Don't ask me what it's called, but it hooks up through the breathing tube and provides her albuterol (which helps to open the airways), along with some air pressure and a bit of oscillation (a shaking motion). The idea is to get the secretions in that area moving, so it can be suctioned out. Yesterday, the respiratory therapists had great success with it.

Of course, it's hard to determine when she'll be extubated. It all depends on how quickly her lungs can heal, and how quickly she can start doing all of this on her own. Her doctor hopes it can be Tuesday or Wednesday. Speaking of doctors, here is the cast of characters who have had a big role in either saving Natalie's life or aiding in her recovery.
Four doctors with four perspectives, but one goal: to send Natalie home.
Dr. Rogers was the first doctor we met, although Dr. Storm was here immediately after Natalie was flown here. Dr. Rogers spent the first few days with Natalie, and was the doctor who ended up intubating her on early Sunday morning (at about 3 a.m.). His positivity and reassurance was what we needed during that scary time.

Dr. Storm, it's safe to say, saved Natalie's life. On Monday morning, he switched her over to the high frequency ventilator. Later that night, when her lungs started failing again, he moved her to her stomach, a somewhat small change that started to change things in a big way for Natalie. That move immediately made a difference, then throughout the night, she started to slowly recover. He's not a man of many words, but his confidence is something we appreciated that night.

Dr. Gheen, also a man of few words, has been a huge part of Natalie's recovery. He was aggressive with her ventilator and helped her quickly return to the regular ventilator. He's a kind man, and he did a wonderful job of explaining her recovery plan to me.

Dr. Mosher arrived yesterday. Her innovative thinking is so welcomed here! She introduced the new chest PT machine, which has worked wonders so far. She's also very willing to sit and talk things out, and does it with a  smile!

Yesterday, we also had a couple of surprise visitors: Natalie's vision therapist from before she started preschool, Linda Kraft, and Calvin's preschool teacher, Jane Grunenwald (who brought with her a ton of delicious scotcharoos, which I'm counting as breakfast food today). It's so nice to see familiar faces here. We miss home so much, and that makes these surprises even more special. Thank you Linda and Jane!

One thing I expressed to them, and that I'm not sure I got across to all of you is exactly what happened on Monday night. A few of my brothers and their families, as well as Perry's parents and brother, traveled to Fargo that day because we were fearful it would be Natalie's last day here on Earth. My brother's priest joined us and prayed with us incessantly for God to heal Natalie. I spent most of the day lying in bed with her, reading scripture and messages from all of you.
Natalie's rosary was with her in the NICU, and now in the PICU
Something miraculous happened that day. Prayer chains were formed on Natalie's behalf. Children, friends, family and complete strangers began praying for our daughter. Over 32,000 people visited our family blog to see how Natalie was doing. The prayers were going up fast and furious.

And when I thought the end was near, one small move to her belly made all the difference. We started to have hope that maybe she could make a comeback. Slowly, though the night, she kept improving, until we realized that our miracle did happen. If only you could have witnessed what we witnessed...

Okay, I think I've rambled on enough for today. Thank you for keeping Natalie in your prayers. She still has a long road to recovery, and her tired little body needs all the help it can get.

Thank you from all of us...

Thursday, October 23, 2014

The Birthday Girl

I know I'm a day late with this post, but yesterday was a big day around here and we were having fun celebrating!

As you all know, Monday was a pretty terrible day around here, that ended with an absolute miracle. That day, I thought many times about what it would be like for us on October 22nd, Natalie's birthday. I couldn't imagine how we could make it through that day without her.

So yesterday, we celebrated in a big way with Natalie as she turned EIGHT YEARS OLD! I can't believe it's been that long since she made her way into this world, a few months too early, ready to take on life and start amazing us. She was so tiny; just two pounds, four ounces, but every bit a fighter. I still remember hearing her cry for the first time. She sounded like a kitten, and when her nurse (Laureen) brought her over to me, I didn't notice her size, just her perfect little button nose and beautiful face.
Moments after birth, October 22nd, 2006
Having a preemie is scary stuff. You never know what will happen from one day to the next, so we celebrated her birthday one day at a time, then one week at a time, then on a monthly basis until she reached her first birthday.
First birthday - a big milestone!
We were so grateful to have had that day to celebrate, considering her incredibly rough ride through the NICU, which included Natalie being flown to Minneapolis to save her life. Pseudomonas ravaged her little body, to the point where the doctor told us they had done all they could for her, and it was up to her to start fighting back: and she did. It was like a walk-off grand slam in the World Series game seven. She was our little champion. 

I can't say the past eight years have been easy. Seizures, surgeries, and other obstacles have come up along the way. Caring for a handicapped child isn't easy--but it's so rewarding. We've celebrated each birthday knowing that we are lucky to have her with us. But this birthday was different, mainly because it came just two days after one of the lowest points in her life. Who wants to celebrate a birthday in a hospital, with a breathing tube in her lungs, and in critical condition?

A birthday gift for us, though...Natalie graduated from the high frequency ventilator to the regular ventilator yesterday afternoon. Her doctor had planned on keeping her on the high frequency all day, but she was doing so well, that he felt it was going to be an easy change for her, and it was.
Back to the "regular" ventilator, which is much less noisy
There are balloons and stuffed animals all over her room now, which helps to make this hospital room look festive!
Stuffed animals, balloons, cupcakes, and a big sign from the hospital make Natalie's room look so cheerful!
I'm so sad I couldn't be the one to make Natalie's cake or cupcakes, but we'll have a big birthday party for her when we get home and I've promised to make her the prettiest birthday cake ever.

Meanwhile, she received a package in the mail from her classmates in Minot...get well cards that were meant to be delivered last week in Minot, but the day they were to be delivered, she was flown to Fargo. These cards made our day. Here's a glimpse at just a few of them. My favorite is the picture of all of her classmates, with Natalie in her wheelchair in the middle. It melts my heart.
Cards from Natalie's classmates
Uncle Tim stopped by to say happy birthday, and to play a special song he wrote and recorded just for Natalie. She loves it. It speaks to what we all feel for Natalie.

Here is a link to the song...I know you'll love it, too!:

Uncle Tim stopped by
Natalie's brothers also came by to celebrate with her. The balloons were a big hit for Dexter.
She heard the birthday song many times yesterday, but I'm glad the boys were there to sing it to her, too.
At the end of the day, I got a nice snuggle in with her, the best gift of all. 
Snuggle time
All in all, it was a pretty special day. What a blessing to be the parent of such an incredible girl. I'm running out of adjectives to describe her.

So here's an update on her condition today: 

She's still on the regular ventilator, and they're slowly adjusting the settings to allow her to do more of the breathing on her own. Her sats are a little up and down, mainly because she's got a lot of mucus they are still pulling out of her lungs. She seems very comfortable, despite the fact that they're backing off of the sedation and pain medication a bit. Her eyes are open, and she looks around (although she's blind, so she doesn't see anything but shadows and light). It's nice to see her so alert again. 

She's headed in the right direction, but this hospital stay is far from over. Please continue your prayers that her lungs will heal and she will start to do more effective breathing on her own.

I think the plan is to keep her on the ventilator until at least tomorrow. Who knows what will happen after that? We'll see if she has more surprises in store for us in the days to come!

Tuesday, October 21, 2014

The Waiting Game

Here I sit quietly by Natalie's bed side, staring at her perfect little face. Another day has passed in the PICU, this time without any tears. I keep waiting for something bad to happen...and I'm an optimist.
My current view
Overnight, she kept dropping her oxygen level (this is a good thing!) while maintaining her sats. By morning, she was down to 55%, which is amazing considering she was up to 100% 10 hours before. Small changes in her ventilator were starting to make a difference. 

This is the monitor we're constantly checking. The 92% number is her sats, or how well she's oxygenating her blood.
This morning, Natalie was turned back to her back...a move I was really nervous about. Thankfully, she tolerated it like a champ. In the past, she has really not handled change well. I'm happy to report that she has maintained this lower level of oxygen all day. She still has a long way to go, but we're not seeing the gradual slide anymore. This is not to say that things can't change for the worse, but it's nice to finally see her keeping up with the changes the doctor and nurses are throwing at her.
The high frequency ventilator. The doctor continues to make slight changes in order to get the best possible outcome for her lungs.
Tonight, she's once again on her tummy and doing well. I was really hoping to see her oxygen number go down more today, but maybe that's just me being greedy. A lot of things have changed over the past 24 hours, and she needs time to adjust to all of the changes. Every once in a while, I'm reminded by the doctors or nurses that her lungs are incredibly sick. It's hard to understand that, because in a way I feel that if we just give her a couple of days, she can breathe again and her lungs will be back to normal, but that's not how it will happen. Slow and steady wins the race here. 

When you think about Natalie do you find yourself wanting to take a deep breath? That's how I feel every time I look at her. I want to take a really looooong, deeeep breath for her. I want to give her my lungs. 
Night time - surrounded by her machines and stuffed animals. We're always by her side, even if she doesn't know it.
So what does the future hold? The best case scenario is that she's on the ventilators (high frequency, then standard) for two or three more days. After that, she has to be able to start oxygenating on her own. I don't know how long she'll be here, but it doesn't really matter how long that is. She's in charge here.

Meanwhile, we had some very special visitors today. Grandma & Grandpa Miller stopped by to spend some time with Natalie. 
Grandma & Grandpa Miller were at Natalie's bed side today
What is it about this girl? She simply amazes me. Twice in her life now, she has defied the odds. Of course, she still has a long way to go to get over this illness, but it seemed like all was lost last night. Thankfully, we had family with us in the room and via FaceTime to help keep us strong when it seemed like the end was near. She's slowly coming back to us. I know it's God's will that she is still here.

The priest who was with us much of yesterday (Father Kadlec) asked me yesterday morning if I'm finding answers in my prayers as to whether or not she is ready to go; I answered that I simply didn't know. My thoughts were so jumbled that I couldn't discern what could possibly be the answer to my pleas.

By last night (when Natalie started making a comeback), I realized that the answer to my prayers was there all along. It doesn't matter if she's in my arms or in God's arms. She's known the love of her parents and one day she'll know the ultimate love of God. She is choosing us right now, though, because many children could not endure what she has endured and pulled through. If it gets to be too much, she'll let us know. But there's nothing this girl can't handle. 

I can't tell you how incredibly humbled I am that so many people have taken time to pray for Natalie, to follow this blog, and to offer all kinds of support to our family. I called the water department to pay our water bill today, and after I finished with my payment information, the woman on the phone said, "I just want you to know I'm praying for Natalie." I just about cried right then and there. Natalie's prayer warriors are out in full force! Keep those prayers coming...there's a long road ahead.


Progress? (Fingers Crossed)

I think I've referred to this hospital stay as a "roller coaster ride." I'd like to get off, please. More importantly, I really want Natalie to get off of this horrible ride. Tonight, though, I can report a small improvement in Natalie's condition.

First let me start by saying that every time we try a new treatment (continuous nebulizer, BiPAP mask, high flow cannula, ventilator, and high frequency ventilator), Natalie has a honeymoon period. She does really well for a little while, and then slowly starts to fail, until a big event happens and she really fails. Today's test with the high frequency ventilator was no different. She was going into respiratory failure when she was switched over to it, and she responded quickly! We felt like this is what she really needed, and it was going to do the trick. Over the course of the day, though, she started to require more and more oxygen to maintain her sats. 
Natalie hooked up to the high frequency ventilator
So, once again tonight, she started to really fail and I was losing hope. Then, at the last minute, her doctor decided to turn her on her belly to help take some pressure off of areas of the lungs that weren't opening up. She responded IMMEDIATELY. It was like she was waiting all along to get off of her back. 
Natalie was turned on her belly, which was instant relief!

So peaceful
Since then, she's slowly been moving down on her oxygen. She started out at 9:00 p.m. at 95% on her oxygen. It's now about 1 a.m., and she's backed off to 74% oxygen, and she's maintaining it well. 

Since being on the high frequency ventilator, she's been artificially paralyzed by medicine. They want to make sure she's not moving at all, and not awake for any of this, so she has a myriad of drugs to help her keep absolutely calm. She'll be flipped over every 12 hours now to help take any pressure off of her lungs that may be causing this respiratory failure. Hopefully she only needs one more flip, but I'll be okay with anything, as long as it means my little princess is improving.
Sleeping peacefully with her puppy right now
I'm hoping this isn't another honeymoon for Natalie, but the way she responded says to me that maybe it isn't. (DON'T WORRY - I'M KNOCKING ON WOOD). Are we all lifting her up with our prayers? Is this God's plan for her? I don't know the answer to that, but I do know that you are lifting us up with your prayers. I've been reading every single response to Natalie, and it's comforting to hear from all of you. Your prayers and your thoughts are appreciated.

It was another long day, and it'll be a long night ahead of staring at monitors and hoping that we keep trending in the right direction. 

Monday, October 20, 2014

Another Setback

I have a moment here to get in an update on Natalie. This morning, she started going into respiratory failure yet again. Her sats dipped low and she couldn't recover. That led to the doctor putting her on the high frequency ventilator. A regular ventilator mimics the normal action of the lungs with the in and out movement of breath. The high frequency ventilator uses small puffs of air to keep her airways open at all times. The hope is that this will help to heal the airways by creating less pressure on the parts that need to heal. I'm not sure if that makes any sense, because at this point, nothing is making sense to me.
Daddy napping next to Natalie and her high frequency ventilator
Right after being placed on the new ventilator, she had a little spell and acted like she didn't like it. Since then, she's maintained pretty good sats, and she's slowly trending down on her oxygen. I say this with caution, because every time we think she's doing really well, she goes back to the respiratory failure. 

Resting peacefully on the new ventilator
The terrifying thing right now is that we're quickly running out of options. We need her to start getting better fast, so we can get her off of the breathing tube. We spent a lot of time in prayer this morning. I don't believe now is Natalie's time to go, but we have to deal in reality that it is a possibility. Asking the Lord to give us the strength to be okay with whatever happens sometimes feels like we're giving up, but I don't believe we're giving up...and most of all, I don't believe Natalie is giving up.

I'm longing for the moment when she'll open her eyes and smile back at us. I want to take all of the cords and tubes away so I can squeeze her tight. Please pray that her lungs continue to heal.

"Heal me, Lord, that I may be healed;
save me, that I may be saved,
for you are my praise."
Jeremiah 17:14

Sunday, October 19, 2014

Sunday in the PICU

Last night is one of those nights we'd rather forget. In the world of parenting, there's nothing more difficult than seeing your child suffer, and worrying that you may be sharing your last moments together.

Natalie enjoying the cannula and a snuggle from Daddy before a scary night

It started out all right. It was my turn to spend the night in Natalie's hospital room. We have been alternating since her hospitalization began so that at least one parent can get a somewhat restful night of sleep. Perry had just left, and Natalie was doing really well. Soon after, though, she started dropping her numbers and couldn't seem to get a good breath in anymore.

I called Perry to get back to the hospital so I wouldn't have to make any big decisions on my own. He raced back (he adds: shaking the whole way) and made it in time to see her really struggling. We knew at that point that there was no way we could get around it: Natalie really needed to be intubated. The thought of it is terrifying--and it brings with it a new set of concerns and risks. At that point, though, it was apparent that she just was wearing out. Coughing and breathing was too difficult to do on her own anymore.
Breathing tube inserted (successfully!)
I'm pretty sure I promised Natalie a pony for her birthday if she could make it through the night. Do you think Daddy will make it happen?

Today, she's resting peacefully, although she still needs quite a bit of oxygen to keep her sats up. We're hoping a couple of days of "hibernation" on the tube will help her rest those lungs and start breathing more effectively on her own. It's so nice to see her breathing comfortably, even if it is artificially.

She even had a couple of visitors today, and she acknowledges everyone who stops by, even if it's only by opening her eyes.

Talking to Grandma Lori

Uncle Steve gave her a big kiss this morning
The good news is that the pneumonia is really not the biggest issue anymore...the bad news is that her lungs need a lot of support. The road home will be a long and winding one, but we're in no hurry.

You're lifting her up with your prayers. It's amazing the number of people who are praying for her. Thank you for every single prayer; it means the WORLD to us.

Last night reminds me of the quote from Apollo 13:

NASA Director: This could be the worst disaster NASA's ever faced.
Gene Kranz: With all due respect, sir, I believe this is gonna be our finest hour.

Last night could have been a horrible night for our family, but it ended up showing us once again just what this little girl is made of. And while I'd rather forget it, I know it's just another incredible chapter in Natalie's life story.

Saturday, October 18, 2014

Saturday in the PICU

I know everyone is curious how Natalie is doing, so instead of writing a long post on Facebook, I thought I would update on this Web site. It's been a while since I've written a blog post!

So, Natalie had another rough night last night. Her issue was that she no longer will accept being on the BiPAP mask. It's really uncomfortable, and the doctor described it as driving down the interstate at 80 mph and sticking your head out of the window with your mouth open. It's not comfortable.

Natalie on the BiPAP mask
After a lot of fighting and screaming last night, she finally settled down on the high-flow nasal cannula. The problem is, she's requiring a lot of oxygen to keep her sats up. My nursing friends will understand this, but for those who don't: her target sats number is 88 right now. (Sats refers to the amount of oxygen in the blood.) We all breathe 21% oxygen in from the air, and our sats are close to 100% at any given time. Natalie is struggling to stay at 88% sats while giving her anywhere from 65-85% oxygen through the cannula. Sometimes, when she coughs up some mucus, she can get her sats up to 95%, but she will slowly trend back down to 85-87% sats. The doctor, nurses, and respiratory therapists are constantly working on plans to keep her sats up.

Natalie on her high-flow cannula this morning
She's continuing to get chest PT, as well as a cough assist device every four hours to help her clear out her lungs. Sometimes it works, sometimes it doesn't...but it always makes her mad. It then takes a long time to settle her down and get her numbers back to normal.
Chest PT
The picture above shows Natalie getting her chest PT. She has a vest strapped around her chest, and the two black hoses pump air into the vest to inflate it, followed by lots of shaking. She does this for ten minutes every four hours. She doesn't really mind this portion, but she tends to disagree with the cough assist device that follows it, which breaths air in and out of her lungs to simulate a cough. It's really uncomfortable, and coughing right now is probably painful, so it makes her mad.

Mainly, she is just happy to be off of the BiPAP. I don't blame her. The BiPAP mask, along with the extra fluids she's receiving, caused her face to puff up quite a bit.

Puffy face after being taken off of BiPAP
Being at the ICU has been such a relief in a way. There's always someone here monitoring her, including the doctor. It takes a lot of the pressure off of us. At the same time, we are always in the room with her and always helping to adjust her in the bed so that her sats will go up. Every time I get a second to sit down and respond to a a text, email, or Facebook message or post, she starts to drop her sats. Please know that I am keeping up with everything that you're sending me or posting on Facebook. It's definitely a nice distraction sometimes from staring at monitors.
Natalie's "suite"
There are so many ups and downs here. Sometimes I think she's making progress, and other times I am frustrated that she is requiring so much oxygen. It'll take time, so she'll be here for a while longer. The great thing about being in Fargo is that we have lots of family and friends here. My brother and sister-in-law, Greg and Tahnee, have opened their home to us. My sister-in-law, Brittany, has been on-hand there to babysit 24-7, along with Greg and Tahnee. Bringing Calvin and Dexter here was important to us, and we're grateful that we have family to support us while we concentrate on Natalie's health.

Last night, Calvin got to stop by and visit Natalie. For most kids, something like this would be scary, but he's pretty comfortable with the hospital seeing Natalie in this condition. He helps with her nebulizer at home and doesn't think twice about us giving her medicine. 
Calvin had his name all over the white board the second he entered the room
Natalie loves music, and especially Uncle Tim's voice, so we're happy he could stop by and serenade our little angel. Calvin loves to sing along, too.
Uncle Tim stopped by to sing to Natalie--Calvin joined the chorus. Natalie loved it!
 He's so gentle with her -- it's the sweetest thing ever.
A kiss from her little (BIG!) brother. Calvin was nervous about the tubes
Soon, Perry and the boys will go home, and I'll stay until Natalie's ready to go back home. I'd like to predict when that will be, but every time I make a prediction, I end up being wrong. So, I will predict we'll be out in a couple of weeks, and then maybe she'll be out by her birthday. She turns EIGHT years old on Wednesday!

Please continue your prayers that Natalie's lungs will start to function much better very soon. The Lord is watching over her, and so is her sister, but she needs us to lift her up in prayer during this rough patch.