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Tuesday, December 30, 2014

Back to the Blog

Hello, there.

I bet you were wondering if I'd ever post to this blog again.

I was, too.

In fact, if I'm being totally honest, I wrote those first few lines a few weeks ago. Hmph. December needs one more week.

I do know that a lot of people -- for some reason -- really enjoyed my blog posts while Natalie was in the hospital. I've always wanted to take better care of this blog, and start posting about our lives raising Natalie, but it's easy to get distracted and push this to the bottom of the to-do list. Maybe this will be my New Year's resolution.

So -- where to begin? The last post was from the day we left Sanford Hospital in Fargo. Since then, Natalie has done fairly well. She has put on a good amount of weight now that she has her g-tube. She has three feedings during the day -- and a long feeding overnight. It's taken us a while to really get used to this change, but it's so much more convenient, and so much easier for Natalie.

Right now, we still have the temporary tube hooked up. In January, her doctor will replace it with a button that lies flat on her stomach. Here she is tonight, eating while watching Wheel of Fortune. She has good taste in television shows.
Calvin actually hooked her up for this feeding and was so proud of himself. (I was proud of him, too.)

Not only do feedings go through this tube, but Natalie no longer needs to choke down all of her medicine. It goes through a little port on the side, which means we can even give her meds while she's sleeping. I hear angels singing.

Also this month, the amazing staff at Edison Elementary somehow found the time in their schedules to put together a benefit event in Natalie's name. It was the most amazing night -- not for how much money was raised, but to witness how much love is present for our little girl. Her ability to speak to people's hearts without saying a word is breathtaking. Thank you to all who came, who donated money or products to the silent auction, who said such kind words, and who worked so hard to put this together.
All of Natalie's paras over the past five and a half years in one room! Four very special women, for sure.

Natalie's Night at Edison was amazing!

I'm not sure what I said, all I remember was crying. Natalie smiled, though.

Two of the event coordinators: Jen Crisp & Principal Joy Walker

It doesn't end there.

It was back in August when I really started considering what the future would hold for us as far as transportation goes. We leased a van nearly three years ago, with the thought that after those three years were up, we would probably need a handicap-accessible van. I just wasn't sure how we were going to make it happen. Natalie was getting bigger, and putting her in her car seat (a special car seat which worked well for her size) was getting more difficult by the day.

So I spent a lot of time in prayer, considering what we would do. Would we buy our van and take out a loan to convert it? Would we try to find a van that had already been converted? Or would we just stick it out with the car seat for as long as possible and pretend that we would be fine without it?

Then, a few weeks later -- out of the blue -- we were contacted by someone on behalf of another person/people. The anonymous person(s) was looking to donate a handicap-accessible van to us. But not just any van...a new van of our choice, to be converted by a company called Rollx in Minneapolis. It was simply unbelievable. We weren't quite sure what to think about this. But it was all very real.

We picked out a new van and scheduled a conversion date with Rollx. It was at this time that Natalie got sick--and was later hospitalized. I have to admit that in the darkest of hours with Natalie, I thought about how, if she didn't make it, she would never get to ride in her new van. There were so many positive things happening with her, and this illness came along and derailed a lot of our hopes and dreams for her. We all know how that ended, though. No one could keep Natalie down for the count.

So we sent the van off to Minneapolis and waited until just yesterday to see it again. I flew out to Minneapolis early yesterday morning and went to meet our new transportation and to bring it back home.
It looks pretty much like a normal minivan...

...until out pops a ramp.

Natalie's new wheelchair fits perfectly inside!

It's really interesting how they convert a minivan into a handicap-accessible minivan. The whole bottom is taken out of the car and replaced. With the touch of a button, the door opens, the van lowers, and the ramp rolls out. I would show you on video, but that would mean I would have to take the van out in this frigid weather and get a video. Not gonna happen. I will later, though!

The nice thing about this company is that they are able to keep one of the captain's chairs in the middle row, so we still have that extra seating. There are some things we have to compromise on -- like the loss of some storage space -- but it's nothing compared to what we gain. In the past, I've always tried to find ways to keep Natalie at home in the winter while I do shopping or run errands, or just go visit someone. Loading her up in the cold weather and dealing with a heavy wheelchair was just more work than I wanted to handle. Now, I can quickly get her in and out and we can all enjoy some time away from home together.

To this day, we don't know who donated the money for this incredible gift. Sometimes I wish we did -- but it's also nice to just know that a kind soul or two is out there. What this person(s) did was beyond generous. By doing this, the donor has changed our lives in such a profound way. It's easy to see the bad in this world, but there are a lot of really good people who simply want to help others. I only hope that we can pay it forward in our own way some day.

So that's all for now, but I'm hoping there will be more in the days, weeks, and months to come.

Monday, November 17, 2014

We're Going Home!

A last look at Natalie's super cute hospital home

Five weeks ago today, nearly to the hour, Natalie was admitted to the hospital in Minot. Today, she gets to return home.

What an amazing journey this has been, full of ups and downs, tears and laughs. There were times, I admit, that I envisioned what it would be like to go home without her, and how we would deal with our world without Natalie in it. Thankfully, it was all just a bad dream, and life will go on with her smiling face beside us.

Her path to the hospitalization wasn't a simple one. There are many reasons she ended up in intensive care. She has cerebral palsy and low muscle tone, as well as scoliosis, which means breathing isn't as easy for her as it is for you and me. She has smaller lungs than a girl her age has -- and clearing those lungs can be difficult.

Over the years, her ability to swallow has diminished, and without a g-tube, aspirating (getting food in her lungs) has been a concern, as has refluxing from her stomach right into her lungs...something we didn't even realize was happening.

All of this combined with a virus of some sort and a severe asthma attack landed her in the hospital. Of course, we later discovered that she had undiagnosed pancreatitis...surprise! How this little girl survived it all is really more than I can understand.

We arrived in Fargo on October 15th. The leaves on the trees were the most beautiful shades of yellow, orange, and red: fall was in full swing. We leave today on a frigid day with snow on the ground and Christmas decorations lining Broadway in downtown Fargo.

The seasons have changed while we've occupied this hospital, and in many ways, it's a metaphor for Natalie's life. She came into this hospital a very sick child, and she'll leave here a relatively health girl, but with a whole new routine. A g-tube will be her source of feedings and medication administration.

Our new life will include a lot more of the preventative care, including vest treatments and a cough assist machine. I'm considering building a new wing of the house to store all of her new equipment and supplies. Ha!

In the end, it will be a much better life for Natalie...and for us! Feedings and medicine time will be so much easier, and now I will feel better about leaving her with others if I need to go on a little vacation. That doesn't happen very often! Also, going on vacation with her will be easier. No more mixing up smoothies and spending hours feeding her. Now, we can feed her at any time...even when we're driving somewhere. It's amazing!

Right now, we're busy coordinating medication with pharmacies and equipment with Healthcare Accessories, so I have to cut this post short. There will be more to come, though!

We're ON OUR WAY HOME!



Friday, November 14, 2014

Nurses


I'm not sure I could ever properly put into words the gratitude I feel for the nurses who have cared for Natalie, but I will at least try to in this post.

This is directed at not just the nurses in this PICU, but all of the nurses who have so lovingly cared for our daughter -- and us -- over the past eight years. From the day Natalie was born, we have met the most amazing women, and a couple of men, who have spent their lives taking care of others.

The first person to present Natalie to me was her NICU nurse, Laureen. To this day, she is a part of our lives, as are many of the NICU nurses in Minot who cared for Natalie, even though we don't see them on a regular basis. They were the women who were there when Natalie struggled to survive in the first days of her life. They were there, handing Natalie to me for the first time in the NICU, two weeks after she was born.

Then came the nurses from the University of Minnesota - Fairview (the hospital name has now changed). They whisked her away on an airplane in the middle of the night and stayed with her through the roughest of hours and days. The bonds I made with those nurses can never be broken.

Now, we've come to know a whole new set of nurses at the Sanford Children's Hospital PICU. After a month of hospitalization, I've met the most amazing women...some new to the profession, others who have been around for a long time.

In between hospital stays, there are the nurses who have cared for Natalie in the clinics. They know her story and know how to react when I call the office in a panic.

All of these women are so different, and yet have one common characteristic: their love of helping others. It is amazing to watch them work, and I'm so honored to call them friends.

Over the past month, I've done some thinking about all of the things a nurse does that can sometimes go unnoticed. Her job description is a complicated one. These are a few of the responsibilities I've observed:

CAREGIVERS: They do the things that most wouldn't care to do on a daily basis, like changing diapers, cleaning up saliva, dealing with all of the various bodily fluids that are present in a hospital. They give baths quickly and skillfully, and yet lovingly. They do their best to prevent skin breakdown and bedsores. They do all they can to make sure their patients are as comfortable as possible in a difficult situation. Not only do they care for Natalie, but they care for us. They never leave the room without making sure that we have everything we need.

TROUBLE SHOOTERS: When things are going wrong with a patient, they do all they can to figure out how to fix it. A problem that arises can be the result of many causes, and they trouble shoot to make things better. The answer to a problem isn't always easy to arrive upon -- but they are often left to figure it out on their own.

PLUMBERS: Yes, plumbers. Have you ever seen a nurse sort through the lines of ten pressers to administer a medication? I'm amazed at how they have to figure out which medicine goes here, which feeding tube port goes there; it's so confusing! I can't believe they can keep all of the IVs and lines in order and keep those IVs working well.

JANITORS: They make sure the rooms are clean, in between the times when the actual janitors arrive. They keep things orderly, which may not seem like a big responsibility, but when they've got other patients to care for, and endless charting to do, they still make sure that things are tidy when they leave the room. For the past month, this room has been my home, so it is appreciated!

DOCTORS: Let's face it, the doctors get all the glory. They may make the big decisions, but they are often not there in the middle of the night, dealing with the racing heartbeat and the stomach pains. The doctors are consulted, but the nurses make the quick decisions the majority of the time. They make those decisions based on experience, and do so without hesitation. They have to know how to interact with each doctor; some doctors like to be told what the nurses think needs to be done, other doctors like to come up with the solution on their own.

ASSISTANTS: While nurses do make a lot of the decisions on their own based on what their orders allow them to do, they are there to assist the doctor in any way possible. They anticipate what a doctor needs, and even if they are racing around doing multiple tasks at once, they will drop whatever it is when a doctor asks for something. They get it all done, and often I think it is overlooked at how much they do on a daily basis.

CLERKS: Charting. They chart all day long when they're not caring for patients. Yuck.

COUNSELORS: I don't know how many times I've cried in front of nurses, or how many times I've asked for advice. They listen and understand. They're a shoulder to cry on, and they are there to tell me what I need to hear. Sometimes that what I need to hear is the absolute truth, other times it's just offering up the best case scenario so I don't lose it. They are there for the best times and the worst times, and everything in between. Which leads to...

FRIENDS: I've spent a lot of time in the NICU and PICU, and typically my favorite time to be here is in the evenings and overnight, because I can sit and talk to the nurses without the hustle and bustle of all that goes on during the day. I've made some pretty awesome friends over the years. Natalie's hospital stays have thrust us into the world of these professionals, but they always become more than nurses to us. We are so blessed to be able to know these people, and even when we leave here, we know that they're always in our hearts and never far away.

They do all of this on long shifts, at odd hours, over weekends, and on holidays. Sometimes they have to stay longer than they want to because extra help is needed, but you won't find them complaining about it. You can tell they do what they do because they love to do it.

While nurses are a huge part of Natalie's care team, so are the many respiratory therapists who have spent countless hours doing their best to help Natalie breathe. They have a tough job, and are constantly being called to different rooms to help treat patients and tend to equipment. All of you have been amazing, and I'm so glad we got to know each and every one of you.

We may be leaving soon, but our excitement to be home doesn't mean we are excited to leave you. We love you all. Thank you from the bottom of our hearts.

Wednesday, November 12, 2014

Leaps & Bounds

It appears as though Natalie is ready to get out of the hospital. Since Sunday, she has made incredible strides in her recovery. It's as though a light switch flipped, and she decided she wanted to breathe on her own.

Since extubation last week, she was on the high flow (blended flow) nasal cannula. It's a step down from the large BiPap mask, but still provides a little bit of pressure to help her breathe, as well as some oxygen support. It makes her so happy to have the mask off!
video

On Sunday, the plan was to let her do a 40 minute trial on the blended flow. In the past, she hadn't done very well with it. The first test on Sunday went really well...so well that a second test was planned for later that evening. It was supposed to last 45 minutes, but she did so well that it lasted over five hours. She went back on the BiPap overnight, but it was so encouraging that she was showing us she was ready to breathe on her own again. Maybe it was because Daddy visited on Sunday and got in some Natalie time.
Natalie got out of her bed for a while on Sunday while her sheets were changed
I know it gets to be a lot of medical terminology, but basically what happened was that Natalie's lungs healed enough, that what looked like another two weeks (at least!) in the hospital turned into just days. For the past few days, the doctors have been weaning her off of the oxygen support, in the hopes of getting her on a regular cannula -- or even just plain room air.
A peaceful afternoon, resting with the high flow cannula
This news is wonderful! I can see the end in sight...but the biggest hurdle right now is getting her off of the medication she's received over the past three and a half to four weeks. Being on the ventilator means being on some really addictive medicine, including morphine and Precedex (a sedative). She's no longer receiving the morphine, and she's now nearly done with her Precedex. I can't even begin to imagine how difficult this is for her, but I'm able to witness it with her high heart rate, jitters, sweating, and general grumpiness. I don't blame her..it must be horrible. She does get some medicine to combat those side effects, but mostly she'll have to just get through this, and hopefully it won't last much longer.

In the meantime, she has a new g-tube and is dealing with whatever pain is felt following that surgery. She also has a new anti-seizure medication, so we're also cautious of how she's reacting to that. So far, so good.

It seems like a lot for a little girl like Natalie to handle, but the most important thing of all is that we've got our old Natalie back. She's smiley. She's happy (when she's not having a rough spot with her withdrawals). She's snuggly. The sparkle is back in her eyes.
She couldn't stop smiling when she got back on the cannula
So the million dollar question is: when will she get to come home? I''m hoping it will be in a few days or so, but it's hard to predict something like this. She still has her PICC line, and needs a bit of oxygen support, which means she still is ICU status. Pretty soon, we'll be moving out of the PICU to a regular room, which seems weird. I was hoping we could just go from the PICU right back to home, but it's best that she's not taking up a bed in the PICU if someone else needs it.
Our home away from home
This room has begun to feel like home to me...isn't that sad?!? So much has happened in here in the past few weeks. She arrived here via helicopter, nearly died here, celebrated her 8th birthday and Halloween here. There have been many tears, smiles, and laughter in this room, along with a lot of suffering. We've prayed, read books, sung songs, and whispered thoughts here. The walls are lined with colored pictures and get well signs, and balloons and stuffed animals are everywhere. I've slept for four weeks on the uncomfortable little couch...I'm fairly certain my bed at home is going to feel like a cloud. I've met some incredible men and women of the nursing and respiratory therapy staff. It's our little corner of the world.
Snuggle time is much easier now that she's on the cannula
And yet, I'm so excited to leave it! But leaving means I'm taking Natalie home, and this will be much like taking home a newborn baby...in fact, it's even more intimidating! With her new g-tube, we will have a whole new regimen for feeding and administering medication. We'll also be doing much more preventative therapy to keep her lungs from failing again. It seems a bit scary, but it will all be much easier than before once we get used to the new schedule. She's also getting a new wheelchair -- that was in the works before she was hospitalized -- and we'll soon have a new wheelchair-accessible van. Life is going to be so much different in the weeks to come!

P.S. Many people have encouraged me to take care of myself during this whole process, and it's easier said than done. However, a very good friend in Minot set up a special treat for me the other day -- a pedicure! Thanks to the help of another friend here in Fargo, I was able to enjoy a little time away from the hospital.
Pedicures were a fantastic treat

Saturday, November 8, 2014

Day 27: Frustration & Faith

The days are just flying by here in PICU room 477. Another week has passed, and the improvement is slow, but steady. There are many things to be thankful for, but there are also many rough spots along the way that leave me scared and frustrated.

This morning, Natalie is resting peacefully in her bed, with her BiPAP mask on, snuggling her little puppy friend.
A peaceful Saturday morning
BiPAP is a tricky thing for Natalie. Since she was extubated, she was also taken off of some of the sedation she's had for a long time, as well as the morphine. Of course, she's become addicted to the morphine. So now, along with the switch to the somewhat scary BiPAP mask, she is going through some pretty nasty withdrawals. Sometimes it's hard for her to relax into the mask's air pressure. It's like watching someone who has never ridden a horse before start out at a gallop. She can't understand how to relax into the motion of the air unless she gets a sedative. 

At times, she does really well and slows her heart rate and respiratory rate down to a really comfortable level, as evidenced below. 
video

Other times, though, she fights it so badly that it looks like she's suffocating. The key right now is to keep her sedated enough to relax into the mask, while at the same time keeping her awake enough to take the good breaths. Hopefully the withdrawal phase will pass soon. As long as she is in this state, weaning her off of the mask will be tough...so she may be on the mask for a while before she can handle the cannula. 

The good news is that she is taking full feedings through her new g-tube, and it's going really well. Since she no longer needs any IV nutrition or morphine, she also got to say goodbye to her central line. The central line was an IV in her femoral artery, on the inside of her thigh. It was in such an awkward place, it's nice that it's gone. I'm sure she's much more comfortable without it. Now we're down to just the PICC line in her arm, which has been there for quite a while. I'm hoping that will go away soon, too.
The PICC line - hopefully it will be gone soon, too!
This would all be so much more bearable if I didn't have two little boys at home, who continue to grow up while we're gone. They miss their big sister, and they miss Mommy. Thank goodness for technology...especially FaceTime. I see the boys at least once a day and talk to them, and they talk to and sing songs to their sister, too!
FaceTiming Natalie while eating spaghetti: my multi-tasking Dexter

Calvin likes to hear his bedtime stories from me. Oh, I miss him.
The days actually do go by fast for me. There's always something going on here, or someone visiting. I've learned how to make the best of cafeteria food. I've created some pretty awesome salads with the salad bar. I'm actually reading books and doing my nails; two things I rarely get done at home. I also get a lot of one-on-one time with the most amazing little girl in the world, so that's pretty awesome. 
A quiet night in the PICU
I know many people think I'm so strong for how I'm handling all of this, but I can assure you that deep down inside, I'm a mushy mess. Being optimistic and upbeat is how I handle stress. It's easy to feel sorry for yourself, and I do often...but what good does that do me? I'd much rather be happy, so I won't wallow in my sorrows for long. I keep the mushy mess part of me hidden away until I need a good cry, and then I feel bad for the nurses who witness it! Ha!

On a similar note, I met a new friend a couple of weeks ago. We've both had some pretty traumatic experiences with our children, and talking to her was so therapeutic. I felt like I'd known her all my life. We both have a strong relationship with the Lord, even though it's been tested so many times. 

It got me thinking about what faith really is. My faith in God is not simple. I don't blindly follow Him, hoping that one day I'll go to Heaven. I look for Him in the times when it's most difficult to find Him...the times when I'm wondering if He's there for me at all. When I come out on the other side, whether it's good or bad, I know He was there all along. I can feel it inside, because I don't feel alone. Life doesn't always go the way you want it to go. 

I have a lot to be thankful for these days, and now I'm making an extra effort to share my happiness. We're in a place where there is a lot of sickness and sadness. You'd be surprised how many elderly people in wheelchairs will light up if you just look them in the eye and say hello or strike up a conversation in the elevator. 

Anyway, it's time for me to get off of my soap box and get back to admiring Natalie. Please pray for her strength to make it through this tough stretch and stay on the BiPAP so she doesn't take any big steps in the wrong direction. Thank you for all of your amazing support!

A joyful heart is the health of the body,
but a depressed spirit dries up the bones.
Proverbs 17:22

Wednesday, November 5, 2014

Day 24: Extubation & Exhaustion

It's a rainy, snowy, cold day here in Fargo...three weeks to the day that Natalie arrived here. I remember packing for our trip here thinking the stay couldn't possibly be any longer than a week. So much has happened since then. It feels like we're in the homestretch sometimes, and other times it seems like there will never be an end to this.

This morning, I had so much hope that the end could be near. After all, yesterday was a big day...Natalie was extubated!
Unfortunately, being extubated means it's back to the BiPAP mask, which is very irritating for her. In the video below, you can see how the mask fits tightly against her face and blows the air violently into her mouth. You can imagine how uncomfortable that must be.
video

She's making this change at the same time that her pain medication/sedation is being cut down, and that results in her being more aware of what is going on. Now her heart rate is shooting back up, as is her respiratory rate. She's doing a great job of keeping her sats up and coughing up all of the mucus from her lungs, but she's working harder to do it, and that's not a good thing.
The BiPAP takes up her whole face...you can see why she doesn't like it!
Hanging out with my little one while she wears her lovely BiPAP mask
We've tried the high flow nasal cannula a couple of times since yesterday, and although she loves it, it just doesn't provide her with the support she needs at this point. I finally got to see a smile last night, during the short period of time she tried out the cannula. It's been two and a half weeks since I've seen that, and I can't even begin to explain how therapeutic that was for my heart and my soul. Her smile is so precious, because many times it's the only way she can express to us if she's happy.
A SMILE! It's a beautiful thing.
Although things seem to be moving in the right direction, I was reminded today by Dr. Gheen that he won't allow her to struggle through this process. If she continues to work too hard to breathe, he will put the breathing tube back in. Hearing that was like a knife in my gut this afternoon. I need to believe that she is nearing the end of her hospital stay; the thought of going backward is devastating. I'm not one to cry very often, but this afternoon, I broke down in front of her nurse an respiratory therapists. I want to make things all better for her right now. I want our lives to return to normal.

The sad thing is that I'm getting used to this. I'm forgetting what life is like outside of a hospital. Thankfully, Natalie and I have met some very special people. The nurses and respiratory therapists are just fantastic. Watching them work has been fascinating. They are so caring and so knowledgeable. I've learned so much from them, and at the same time, they've been so encouraging to us. By now, we've met just about every nurse on the floor, but somehow I've only managed to get pictures of Natalie with a few of them.
Lori and Caitlin--we LOVE them!

Roxanne is an amazing nurse
Meanwhile, one of the worst things about being in the PICU and pediatric unit is that every once in a while we'll encounter a family going through what we have gone through in the past. I walked past a family whose baby was being put on a Life Flight. We've seeing crying families in the PICU; the parents who can't make eye contact because they don't want others to see what they're going through. My heart aches for these families because I know that you can't just tell them that everything will be all right. Sometimes it won't be all right. Other times I see the babies who have no family by their bed side. I wish I could be there for them to show them the kind of love that Natalie receives.

Speaking of the love she receives...a recent present from a neighbor back home is a wonderful addition to Natalie's ever-growing cast of stuffed animal characters on her hospital bed. Many of our friends will know and appreciate this teddy bear from Metigoshe Lutheran Church. Thank you, Kim, for this...

...and also for this. :) Would it look odd if I pour myself a glass of wine in the PICU?



Monday, November 3, 2014

The Number FIVE

Today is good. Today is GREAT!

Today is a happy day.

It's been three weeks since Natalie was admitted to the hospital for...whatever it is she has. Now I am starting to see the light at the end of the tunnel.

This morning, I woke up thinking Natalie was going to have a really fantastic day...and I was right. Her sats have been so good the past couple of days, I just knew that it was time to lower her settings again. So this morning, Dr. Rogers moved her PEEP down to a 5. That's right...she skipped right from a 7 to a 5. And guess what?! She didn't even flinch.
The magic number: FIVE
She did so well, in fact, that she was given a spontaneous breathing trial this afternoon. By taking away her support, they can see how she does on room air before taking the breathing tube out. She passed that test with flying colors, as well. Unfortunately, we have to wait until at least tomorrow to take the tube out, because she's been getting regular feedings through her feeding tube all day. They want to extubate on an empty stomach, in case they need to re-intubate. That can cause her to gag and vomit, so it's best to do with an empty tummy.
The last night with the breathing tube?!?
Hopefully by this time tomorrow night, Natalie will be free from her breathing tube!

Meanwhile, my little (BIG!) guy turned FIVE years old today! Yesterday, I got to take Calvin to Chuck E. Cheese's here in Fargo, which was super exciting for him. Today, he celebrated at home. Hopefully, this is the last birthday I'll miss for a very long time.
My little jokester turned FIVE YEARS OLD today!
Overall, I'd say it's been a very happy Monday.






Sunday, November 2, 2014

A Hospital Halloween

Time marches on, whether I like it or not. The days are passing...twenty days to be exact...and life keeps happening outside of this hospital.

Natalie's birthday came and went, my boys put on their costumes last night for Halloween and ran through the neighborhood without me, and Calvin's birthday is on Monday. This is a busy time of year for us for many reasons, but it's usually a fun time of year.

Instead, this year, I'm a little bummed out that we all couldn't be together at home for these big events. Of course, I'm thankful that we still have Natalie with us to celebrate, but that doesn't take away from the fact that our lives are on hold for a while.

Before I get any further into this post, I'll give you an update on Natalie's status. She is such a rock star! Every time the doctors challenge her by dropping her ventilator settings, she reacts really well.

Here are the numbers we are looking at right now:
(f) is for frequency, or respiratory rate; PEEP stands for positive end-expiratory pressure
Tonight, her respiratory rate is down to 10. That's how many breaths the machine is requiring her to take per minute. She's now doing a lot of the work on her own, but if her sedatives and pain medication drop her respiratory rate down too low, the ventilator will pick up the slack. This is one of the reasons they are starting to slowly back off of the medications...because they want her to start making more of an effort to do the breathing on her own.

The second number we often look at and spend much time discussing is the PEEP, which tonight is at 7. A few nights ago, it was at 14. PEEP stands for positive end-expiratory pressure, or in other words, how much pressure is left in our airways AFTER we exhale. A higher number means a higher amount of pressure is required to keep those airways from closing. When she was at 14, I often heard that that amount of pressure is really uncomfortable, especially for a little one like Natalie. Now that we're back down to 7, we're getting closer to the point where she can be safely extubated. Word on the street is that 5 is usually the magic number, so we could be looking at a couple of days from now to get the tube out...fingers crossed.

I should stop here and say that I know for a fact some of the respiratory therapy crew members here have been reading these posts, so I hope I'm not embarrassing myself too much! Ha!

Natalie's other challenge right now is feedings. We are a few days past the insertion of her g-tube, so they've now begun putting Pedialyte through it to test it out. It seems like it's working well, so hopefully we can start putting some good nutrition through the tube and get her digestive system working well.

While these are all big steps, and she is definitely moving in the right direction, she is still far from making her grand exit out of this hospital. She still has to prove herself on room air, and that means baby steps. She'll likely go from the breathing tube back to either the BiPAP or C-PAP or a nasal cannula before trying out room air. We are likely looking at at least another week or so before she'll be ready to go it on her own.

Life will be much different when we leave, but it will be so much easier in many ways.

So, of course, Friday was Halloween. It's sometimes hard for me to understand that these things are happening, when I'm spending most of my time in Natalie's room. Thankfully, we had lots of visitors doing a little reverse Halloween trick-or-treating...stopping by the PICU rooms in costume and dropping off treats. There were lots of fun costumes, including a group of minions.
Our trick-or-treaters
Natalie didn't have a costume this year, but I put a tiara on her for a quick photo-op. What a pretty princess.
My pretty princess

Back home, the boys ran around the neighborhood with Grandpa, their aunt, uncle and cousins. Ahhh....another freezing cold Halloween!
*insert teeth chattering*
Meanwhile, Natalie's manicure has held up for almost a month now, so it was time to try out some new nail art last night.
Nail art on Natalie's beautiful nails

The boys are doing amazingly well traveling back and forth to Fargo. I have them here with me this weekend...and Calvin proudly declares that, "Natalie really needs to hear my voice." (She does.)
Can you find Natalie in this picture? Hahaha!
Calvin loves hanging out in the PICU
He loves spending time in her hospital room. Dexter, on the other hand is a little too "active" to be hanging out in the PICU, so he usually stays at my brother's house when I'm here with Calvin and Natalie.

I am longing for the day when I can wake up in my own bed, then trot out to the kitchen to make my kids breakfast while sipping my morning latte. I can't wait to use my own vacuum cleaner and washer & dryer and get things done around my house. I dream of the day when I can sit on my couch at the end of a long day and sip a glass of wine while Perry and I watch an episode of "Homeland." The big events are passing us by, but it's really the little things that are missing from our lives.

We're making the best of it, but there's really no place like home. I'm tired, so even though I'm not all that impressed with this post (other than the cute kid pics), I'm publishing it anyway. I hope you enjoy it!

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:

video

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 is...it'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 now...it'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...
Melissa