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.

AND....A BIG DAY 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. 

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 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 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. 

Graduation Day

Perspective. It's an important thing.

Last night, our darling daughter took part in her kindergarten graduation with her classmates -- the class of 2026. It was a cute little program, with music and diplomas, family and friends, and lots of smiles and laughter.

Natalie is just like any other kid...she loves music and noise. But she's unlike most kids at her graduation, because she has cerebral palsy and is bound to her wheelchair.

Growing up, I remember one child in my school who had cerebral palsy. We didn't see much of him, except in the hallways. He spent most of his days in the resource room with some wonderful teachers and therapists.

My, how the times have changed. If there is one word that describes Natalie's school experience, it's this: inclusion.

Natalie, receiving her kindergarten diploma from her classroom teacher, Mrs. Nelson

Yes, Natalie spends lots of time in the resource room with her therapists, but she's also spending time with her classmates, playing games and painting pictures. Her friends help her learn by encouraging her to press her "switch." A switch is a big button with pre-recorded commands, like "knock it down!" The kids build up a tower of blocks, then Natalie is encouraged to hit the switch and "tell" the kids to knock the tower down.

She has adaptive physical education with her buddy, Nick. Nick helps her play the games that the other kids are playing in P.E. Nick recently told me that the kids used to talk to him when they wanted to throw the ball to Natalie...now they've started to direct their words to Natalie, letting her know they want to throw the ball to her.

Natalie loves this, but more importantly, her classmates are learning that even though Natalie can't talk, she wants to play with them. They're learning compassion, just as Natalie's brothers are learning it.

In this world, I don't think there's a single more important thing to learn than compassion. Natalie has taught me this. It's a humbling experience to be the parent of a handicapped child. No one will ever understand that until it happens to them.

Natalie, with her resource room teacher, LeAnn (left), and her para, Christy (right).
First day of kindergarten

It's given me a different perspective on life. Now I look back and wish that that little boy in my school had been a bigger part of our every day schedule.

That's the wonderful thing about the world in which Natalie is growing up. A handicapped child isn't to be kept from others, she is to be included in every way possible.

Gettin' Clean

Where have the years gone? Natalie is almost 7 years old now, and while she is still small, in many ways she is getting too big. 

Until now, bathing Natalie has been awkward, but manageable. But lately, she has become so long and heavy, taking her in the shower or putting her in the bath has become difficult. I'm beginning to wonder how I will be able to do this twenty years from now. 

Yesterday, we brought home a new piece if equipment that will hopefully help make shower/bath time a little easier.

Following the flood, we knew one of our priorities would be creating a handicap accessible showering area for Natalie. The no threshold shower is pretty nice! And, after lots of research, I found this shower chair to fit inside the shower. It's small, has many folding options, and can also fit in our bath tub. Most pieces of medical equipment end up being too big. This is compact and will be easy to take with us on our travels.

Natalie seems to like it. Time will tell if it is going to be a good solution in the months and years to come, but so far...it's a thumbs up.