What CF Has Taught Me

Our journey with Walter's Cystic Fibrosis has certainly had its ups and downs.  There's a lot of negatives: the hospital stays, surgeries, worry, winter quarantine, time dedicated to treatments etc... but a lot of good has come from it too.

Top 10 Things CF Has Taught Me...

10.  We have the best family and friends anyone could ask for.  We could not have gotten through the past year without them!
  9.  We get to watch the Church in action.  Our local congregation has blessed us in so many ways: financially, with acts of service, and with just checking up on how we're doing and visiting in the hospital.
  8.  Chuck is a really awesome dad and husband.  Reading the CF blogs and message boards I'm a part of, many moms are doing this journey alone, whether their husband has actually left or is just mentally checked out and doesn't help with their child's care.
  7.  Walter is incredibly joyful and forgiving.  He's always smiling and flirting with his nurses even after they have just had to do a procedure he hates.  There's always mixed emotions from the staff when we check into the hospital.  "Its so great to see you guys! Except that you know, you're here..."
  6.   We can be an encouragement to others.  We try to see our time in the hospital as special avenue of witness.  My favorite thing about being there is the ability to bless the nurses, doctors, and therapists.  Whether its with a word of encouragement in friendly conversation or a small gift to show our appreciation, its fun to be able to bless them.
  5.  I appreciate the good times.  Since there's no gaurantee (really for any of us) how much time we have, I find myself stopping to savor the daily play times and cute things Walter does.  CF has helped me bring into focus how precious each of those moments are.
  4.  Live in the moment.  Its hard to do but so worth it!  When you never know when your next hospital stay will be, spending quality time together and planning fun outings on the weekend is so important. 
  3.  God will give you more than you can handle.  And its so freeing!  When you're forced to depend on Him you must give up the illusion of control in your own life.  (Unfortunately I still try to grab it back now and then.)
  2.  This world is not our home.  I've heard this many times growing up as a Christian, but with Walter's disease it has become something I finally understand.  Pain and disease the result of a fallen world and not part of God's design. No matter what we struggle with here, there will be a day when all the hurts are washed away.
  1.  We are called by God to be Walter's parents.  This may seem obvious, but we are so thankful that God trusted us to care for such a special little boy!  There have been some really scary times, but the good far, far outweighs the bad.  We'd never trade a minute of our life for anyone else's.

Grandparents (Part 1)

In the last month we've had visits from both the Gnageys and the Bohalls.    My Mom and Dad came the first week of March, and while they were here, we had a fun day trip to Rocky Mountain National Park.

We took lunch from a Deli into the park and had a picnic out of the back of the CRV

The Magpies wanted to join the picnic pretty bad.  I think they may have gotten a few chips....

We hiked around Bear Lake; which was frozen.

Some people were out in the middle but we stuck to the edge.

Wally had a good time riding in the pack.

He had lots of fun playing with his Papa and Grandma!

Ups and Downs: Our first visit to Children's Hospital Colorado

Living with Cystic Fibrosis has a lot of ups and downs for our family.  Down when he's sick; up when he's healthy; down when he needs new meds or more treatments; up when we master the new thing and life falls back into a normal rhythm and routine again. We've been pretty much "up" since early December.  Walter hasn't had any colds or extra coughing since then and we've been doing just the standard two treatment sessions a day. He's been so happy, and learning to crawl and pull up, and eat more foods and all the normal baby things.  It's easy to forget he has CF.

Plus he's super cute!!

Our appointment was on February 7th at the Children's Hospital in Denver.  We really like our new doctor and team of therapists and nurses.  We found out that at 19lbs12oz and 28.5inches Walter was finally at his goal weight 51% of weight for height.  Yay, major up! They changed his therapy regimen a little in that we will be doing inhalers instead of nebulizers.  I was like "How do you get a baby to use an inhaler?" But they have this handy chamber with a mask attached (see below) that makes it pretty easy, and it's a lot faster.  You only have to keep the mask on his face for about five breaths instead of 20mins. Up!

Check out this kid.  He loves it :)

Then we got sent down for a routine x-ray since the films from our old clinic in IL hadn't made the transfer.  As soon as we made it back upstairs the CF team had the x-rays electronically; pretty slick.  However, the x-ray showed a little congestion in one of his lung lobes so we'll be doing a little extra CPT "thumping" in that area to try to get it cleared out.  Slight downer, but it didn't seem too serious and we were glad they caught it since he wasn't having any symptoms.  Worst case scenario; if it's not cleared by our next visit, they will do a broncoscopy and clear it out manually in order to prevent infection.  Last of all we had labs drawn to check all his vitamin levels and enzymes and such.  It always seems like they take soooo much blood!  But he did fine and stopped crying even before the lab techs were finished.  They gave him a stuffed animal pig as soon as he was done and he loved it! Finally we were done :)

Last of all Chuck and I got a cup of coffee and some gelato in the hospital cafeteria and Walter had some blankie. Yum!

This brings us up to yesterday, when Dr. Liptzin called with his lab results.  His liver enzymes were elevated so we will meet with a liver specialist to rule out any major problems.  Liver issues are not uncommon in CF.  A little scary, but we are optimistic.  If there is something going on with his liver he may need to be on another medication.  Also he had a new organism show up in his sputum culture.  Pseudomonas.  The bug that strikes fear into the heart of every CF parent.  Apparently it's not Pseudomonas aeruginosa which is one of the more damaging bugs to lung tissue, but it's in the same family. Major down :( So we will treat it with inhaled antibiotics and get another culture done in 4-6 weeks.
 Eventually almost everyone with CF will get this bug. Their sticky lung mucous just harbors it, and apparently it's everywhere; in the air, the soil, warm lake water...so it's not like you can hide from it. I just remember a doctor telling me that the longer you can avoid this one the better.  So I was really sad when I found out he had it at only 9 months.  I don't know if there's a typical age when kids usually first culture it; he just seems so young.  We've definitely been plunged back into reality.  Walter does have CF and it will be an ongoing battle to keep him healthy.

Our biggest "up" is that Walter is still feeling just fine! Also we are thankful for the excellent CF team we have.  They are proactive and focused on preventing him from getting sick rather than waiting for symptoms to show up.

Daddy and Walter with his new Piggy.  He loves to snuggle it :)

Crawling in Colorado

Well, we are safely ensconsed in our new apartment in Longmont, Colorado. There are still a few boxes sitting around, but we are getting there. It seems like the last few months are a blur!  Ever since Thanksgiving when Chuck got the job offer at NEON, our lives have focused on packing and moving.  Now we're here and starting to find our new "normal."  Walter was considerate enough not to start crawling until we moved so we only had to baby proof one house :)  Now he's a mobile machine and explores every nook and cranny of our little apartment.  Luckily it's a pretty open layout, so its easy for me to keep an eye on him.  He is "talking" a lot and says Da-da-da-da all the time.  We're working on "Ma-ma." :)  Here are some pictures of our westward migration and Wally being cute :)

This is the family on the morning we left.  Our hair is a little crazy since we spent the night on the floor(I am now officially too old for that).  I was sad to leave Wally's decal in his room that Chuck put up one leaf at a time.  But at least we have a picture of it :)

  Chuck driving...like a boss!  

Bruce, Mary Jane and I also took turns driving the Penske, but Chuck took a few extra ;)

This is the view as we are getting close to the apartment.  

Yes, I can walk outside and see mountains every day!

After two full days and two nights on the road, and some help from an awesome crew of movers, we landed here....

Don't worry, it looks much better now!  Usually....

Earl began exploring right away.

So did Wally!  He starting crawling the first week we were here and pulling up the next :)

Playing with Grandpa Bruce.

Bath time fun!

View from the lake near our apartment.

Bohalls in CO.  

It was cold for a few days when we first got here, but the average temps have been around 50 since then.  It's awesome!

NICU Part II

At 2:26pm on May 10^th, Walter went into surgery.  The surgery was expected to go about 2 hours. 

                A few side notes:  About an hour before Walter’s surgery, I was contacted by a case manager for our insurance.  As it turns out, she is now an important part of our lives.  She helps us manage all the insurance and bills, no matter how complicated.  Also, we heard about the hospital’s community care program that helps families with bills. 

                Around 4pm, the surgery nurse let us know that the surgeon was finishing up.  Walter had a bowel blockage known as Marconium Ileus, which was often related to Cystic Fibrosis.  It was pretty clear at this point that our NICU experience was just beginning.  Just recovering from bowel surgery would take some time.  Also, because the blockage had been present throughout Walter’s development in the womb, his bowels would need to mature and develop.  It took us awhile to get to a schedule, but eventually our trips to the NICU became a routine.  Abby and I slept at home at night and spent the day at the NICU.  Walter slept all the day and partied all the night.  But we didn’t know about the night until much later.

                Then, on Saturday May 12^th, things got crazy.  Someone hit our parked car in the hospital parking garage and drove off.  So, I spent the weekend talking to auto insurance and police and hospital security.  

NICU stay part I

Abby asked me to write out some of my notes from Walter’s birth.  The blog has been waiting on my response for awhile, because I didn't get this done.  So I'm going to go part by part.  Here’s what I’ve got:

                One piece of advice I got sometime during Abby’s pregnancy was to prepare a notepad to be included in the labor bag.  We found some cute ones, and I slowly started to fill in the first few pages with some information and some fill in the blanks.  For instance, all the information for check in was on the first page.  That included names and social security numbers, address and phone numbers.  I put the hospital’s number and our physician’s number with all the rest of the info, too.   As it turns out, I needed the notebook to keep track of all the things that happened over the next few weeks.  Here are my notes.

                Abby already wrote about the labor and such, so I’ll skip ahead to the trip to the Neonatal Intensive Care Unit (NICU).

                On the morning of May 9^th, both Abby and Walter were cleared to start getting ready to go.  We were told to pack up at our own pace, and the nurses would get the paperwork ready for checkout.  Walter’s early morning checkup had gone well, although the pediatrician wanted us to stay until he pooped.  We were advised to not worry, there was still lots of time for that.  By 10:40, Walter hadn’t poop, and he had just pit up bile.  We believe God placed the right nurse in the room with us at that time, because she called the on-call doctor to come and have a look.  He ordered an abdomen x-ray.  This was about 39 hours after birth – definitely too long to not have a poop.  The birthing unit nurses tried a few things, but nothing worked.  At 12:20pm, we were told there would be tough news regarding Walter’s intestines.  By 1:15pm we were transitioning from Provena to the Carle Foundation NICU.

                By 2:04 pm we were at the NICU.  Then I got a phone call.  The papers we signed to have Walter moved from Provena to Carle had been lost and the transition team needed permission to move Walter.  In other words, we were at the NICU, but Walter hadn’t made it yet.  We gave permission.

                By 3:05 pm Walter was in the NICU. 

                At 3:20 pm we met with a pediatric surgeon.  Dr. Allen Browne was in town for a couple weeks at Carle.  Normally, he spends his time at the Children’s Hospital of Illinois in Peoria, but he was here this week. 

                In the meantime, I was calling several insurance and dealing with phone calls from various people and groups.  I’m not going to put all those details in here now, because there are way too many.  I’ll just stick to what was going on with Walter.  A quick illustration, just to give context: This was the start of a several weeks where I ignored phone calls from people in my phone’s contact list and answered every unknown number because it could be a nurse or ambulance or insurance, or any other thing.  I later told people that they should feel good when they didn’t get me on the phone, because it meant I knew who they were and could safely ignore them for the time being.

                6:25 pm We discussed using the rooming out room at the NICU, but decided we would be sleeping at home at night. 

                8:00 pm We met the night nurse.  Each day from 7 to 8 am and pm, the nursing staff would change over and spend an hour talking to the next shift about the child each nurse would be assigned.  Over the next few weeks, we would meet many. 

                On the morning of May 10^th, Walter went to have several tests run.  They took about an hour, from 9 am to 10:15 am.  Afterwards, we met with Dr. Browne, who explained a bunch of possibilities but recommended exploratory surgery to determine exactly what was going on.  By this point, none of the flushes or stool loseners or anything else had gotten Walter to poop.  And his belly circumfrance was getting large.  We called the family in and 3 generations of family prayed for Walter and the surgeon.  By this time, Abby and I were fairly well exhausted and running on quick naps only.  We couldn’t stand to sleep much because we never knew who would need to talk to us about any changing plans.

Date Night!

So last weekend, Chuck and I attempted our first "night out" without Walter. His parents were getting ready to leave on a work trip for a week, so they were wanting to get some extra baby time in before they left, and graciously offered to babysit. I was pretty anxious about leaving him (more on this later-turns out a medication I was taking was increasing my feelings of anxiety), but also excited to get out for a bit. We decided to go out for dessert and a glass of wine at Sunsinger, and then go to campus town to listen to some bands. It was so nice to get out by ourselves for a bit. We sat outside at Sunsinger and I enjoyed an enormous slice of cheesecake with raspberry sauce which was amazing! I also ordered a glass of Malbec, which sadly did not live up to its description in the menu, but was still enjoyable. Chuck got a fruit tart and Gewurztraminer, which was a nice summery pairing. We met up with a few of Chuck's friends at the concert and had a nice time. When we got home Walter had been great for Grandma and Grandpa. He ate and slept and wasn't fussy. I'm finding that the more I push myself to take these little breaks, then it doesn't seem so hard to do it the next time.

Getting ready to go :)

 Walter had lots of fun with Grandma and Grandpa.

Even developed some good fine-motor skills!