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!


Friday, November 14, 2014


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!

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 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 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 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. 

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 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.

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 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!