Updates

This is an archive of the updates I was writing while Linnea was still with us.

February 17, 2006

    We have not made any updates on this page for some time b/c we also have a site for our little Emily Hope Lee who also has SMA.  She was born July 15, 2005 and she is precious.  Please visit her site here.

January 9, 2005

    I almost forgot, or maybe did... Diana is pregnant again!!!!  She is due sometime in July we think.  More to follow...

January 9, 2005

    A big hello to everyone that actually checks the updates!!  Yes, it has been some time since I have updated Linnea's site with words.  Never the less, we have been reading the wonderful comments left by you all.  Thank you very much, again!  Since Linnea went to be with the Lord our emotions and have been up and down, but with a focus fixed on Jesus.  He is our strength and without Him, we would be much worse off.  Yes, I said worse off because the healing/ grieving process is neither fun nor easy.  Some days are great, others are very difficult as we remember Linnea's life and feel sorrow for the suffering that she endured.  We had the grand opportunity to go on a silent (contemplative) retreat in West Simsbury, CT with a retreat center called Klesis.  It was INCREDIBLE and I will have to wait until another day to comment on what the Lord taught us those three days and four nights in New England.  Sounds like the title of a book.  3 Days & 4 Nights in New England. A journey with Klesis.  Anyway, I will speak of our experiences on a later occasion.  For now, I am starting a new government job tomorrow 01-10-05 and we are excited about the new opportunities that await us.  I was working for Hudson Trail Outfitters for since July and their support during Linnea's death and my pseudo-recovery was very encouraging.  Thank you HTO!!  We will be looking for lodging north of DC and are thankful for what the Lord is going to provide.  Thank you for your continued prayers and support.  We hope to speak with everyone at some point as soon as possible.  Feel free to write, call, email, or visit!!  Blessings!

September 24, 2004

    We got a chance to see Linnea at the Funeral Chapel on Wednesday and it was good.  It was good to have the physical reminder that Linnea had gone to be with the Lord.  She is no longer here, only her body has been left behind.  I explained it to Annabelle the other day... Our bodies are like our cars.  When we get out of our car it is still a car, it's just empty.  We go home and our car is just there.  When we die we go "home" and we leave our bodies behind just like we leave our car.   

September 22, 2004

    I wanted to let everyone know how Linnea's final moments with us progressed, so I am going to note it here.

Sunday was a great day.  I was gone at a huge gear clinic for work, but Diana, Annabelle, and my mom and dad brought Linnea to church and went on a walk in the evening.  During the walk that evening Linnea was abnormally irritated.  After I returned, and as the night progressed, Linnea began to work very hard to breath and we started giving her Morphine so she would not feel so anxious.  Even though we were giving her Morphine she only slept for about 2 hours that night, and her heart rate had reached 215bpm as I recall.  I decide to call work and suggest that I should stay home, that turned out to be the right thing to do.  Throughout the day on Monday we were increasing the doses of Morphine to help Linnea rest, but because her heart rate was so high we were not able to do the normal routine of chest physical therapy (CPT) and suctioning.  We just wanted her to stay as calm as she could and rest.  At this point we did not know how quickly her body would shut down.  We were thinking maybe a few days, but it was a mystery.  Her breathing became more and more labored as the day went on into the evening.  We had increased the Morphine doses from .5cc on Sunday to 2cc on Monday at 9pm or so which caused her to be less alert, but more calm.  She would pick things in the room to stare very intently at.  Sometimes she would stare out the window, sometimes  at the ceiling... it was hard to tell, but it was VERY focused.  She had a hard time focusing on us, but it was obvious that she loved to hear our voices.  Her breathing was accompanied by moaning, to help her exhale, but when we were there she was definitely letting us know that it made her feel good.  Because we were not able to do our normal routine, the suspected sickness was filling her lungs at a steady pace with secretions and by midnight it was apparent that her breathing had become minimally successful in providing the support that her body needed.  But we still did not know how long she would be with us.  We spent some time on the phone with our Doctor and the Hospice Nurse in hopes of understanding what we might be facing for the rest of the night.  After little discussion we decided that Linnea just needed to be held.  We thought maybe she was trying to tell us this by her interaction with us throughout the evening, but it was such a taxing exercise that we often opted not to in order to help her remain comfortable and stress-free.  So, after talking with her for a long time and touching her little body so she would know we were still with her, we started to hold her in our arms... it was awesome.  We had not been able to hold her little body and hug her in so long that it was like holding our newborn baby all over again.  And she loved it.  She looked us in the eyes with her mysteriously understanding stare almost the entire time.  We held her, hugged her, and sang to her for a while and then decided to wake up the grandmothers ( Diana's mom and sister had driven down from Philadelphia early on Monday).  In the last 15-20mins Linnea was opening her eyes very wide and looking at us very intently.  She gave us a few smiles and acted more alive than she had since Sunday.  We woke Annabelle up and as we all sat sat on the floor we sang "Jesus Loves Me" to Linnea.  As her oxygen saturation dropped we disconnected her from her machines and everybody's hands were draped across her beautiful little body.  Her breathing slowed and as she took her last breath at 1:55AM, I felt as if something swooped through the room and took the air right from my chest.  Her faced softened and all worry, anxiety, pain and any trace of discomfort that this horrible disease had given her disappeared.  All of the sudden we had a little girl laying there with us.  She was not sick and she was not struggling because the Lord had taken her home.  My guts wrenched like never before and we sobbed for some time.  The weight and responsibility of Linnea's condition had been so heavy that we were suddenly faced with an emptiness that will take years to understand.  Relief and sadness are a beast of a combination to endure in one moment.

After Linnea's spirit went to reside with the worshipful angels in Heaven, we were left with the body of the most beautiful little 1 year old girl you have ever seen.  Careless and free from the agitations that filled her life for the last 9 months we could not stop holding her and looking at her perfect little face.  We took many pictures and I will publish some of them to this site when I get the chance.  They are priceless.      

September 21, 2004

    After 1 year, 1 month, and 6 days our little beauty has gone to be with our Lord God in Heaven.  Did we see it coming?  Yes we did, but nothing can prepare you for something that completely changes your life.  Our lives completely revolved around Linnea and her care needs since January 12, the day of her first hospitalization in Denver, CO.  We are so blessed to have been Linnea's parents as she was such an amazing little girl.  She was perfectly content despite all the treatments and monitoring she had to go through.  We are relieved that she does not have to suffer any longer, but the absence is, and will be overwhelming. 

  I stepped into her room tonight, as I do everyday, and felt the need to rub her little legs and touch her skin just as I have always been able to do.  The realization that I will not feel her warm skin under my fingertips was hard to understand, but I knew it was real and true.  We know she is in God's hands now and the only ones suffering are us, the ones she has left behind.  I have never known such love.

  I will be adding more in the days to come, but what about now?  What goes through the head of a father and mother who have lost their little baby girl to a horrible and unexpected disease?  What a perfect picture we have of the sacrifice that must be made in order for us to see God's work.  The necessity of innocent death rings loud in my ears.  All so we can see the price that was paid for us. 

August 16, 2003

    This is Nathaniel (Nathan, Nate) and yesterday was Linnea's 1st Birthday... and it was fun!  Thanks for all of the phone calls and letters.  You all are great!  We have had some uneventful days lately and that has been good.  Some new developments are these:

1. Pediatrician that makes home visits

2. Physical therapist that understands SMA and wants to help us teach Linnea how to communicate via ultra-sensitive buttons.  We have been trying to get her to sit up more and hopefully we will be able to include her in more things around the house.  She has been happy, but we want to do some things that will stimulate her mind like any other 1 year old.  It is tough because I feel like we still talk to her like she is 5 months old, when she was diagnosed and very sick.  Anyway, we are exploring our options and getting all the advice we can get. 

3. We have a great nurse that comes Mon-Fri from 7am-3pm.  She loves Linnea and has helped us out with a lot of the annoyances of equipment and supply provisions.

    So, I am enjoying my job.  Annabelle is still being great, and Diana is taking good care of Linnea while I am away.  She's great!     

July 23, 2004

    I have tried to get this update on the web so many times... sorry to those who have been faithful in checking!  Rather than trying to take some anonymous approach when writing these updates, from this point forward I am just going to say that I, Nathaniel (Nathan, Nate), am writing the update.  Thus far, I have been writing all of them, but I am tired of referring to myself in the third person... it's weird.  So anyway, we have been all over the place since May 31st.  I have taking a trip to Colorado and boy do I miss the Columbine State weather!  I traded the unsellable vehicles for a Dodge minivan and grabbed some of our stuff from Leadville while visiting some fabulous friends before the long, lonely drive back to our new home in Alexandria, VA.  Yes, we have moved in with my parents and we are enjoying the new arrangements very much.  My parents are great and the familiar decor is downright PEACHY if I may say so myself.  Our prior living arrangements in Maryland were nothing to scoff at, but the comfort and familiarity of "home" is deafening.  I mean "really good" when I say that, in case there was any confusion.  Annabelle and Linnea get to see Grandpa and Grandma every day, and we get the much needed help as Linnea's condition continues to take its course.  Speaking of... Linnea has been getting weaker, but she is still our precious little VeggieTales fanatic.  We have been settling into the area and establishing nursing help along with finding new Dr.'s.  There are always frustrations involved in this process, but again, God makes things work out as they need to.  Linnea has been needing more supplemental Oxygen as of late, and she is growing out of the particulars that help us keep her comfortable.  A good thing nonetheless.  She enjoys looking at all the pictures we have and loves it when we make goofy faces and dance around like a bunch of crazies.  She's great!  Annabelle attended Vacation Bible School this past week and a good family from the church we attended in Laurel took care of her the whole week.  What a blessing that was because we needed some time to finalize settling in BECAUSE (drum roll)... I HAVE A JOB!!  Yep, I am the new Assistant Manager of a Hudson Trail Outfitters store in Springfield, VA.  It is a smaller, but incredibly useful outdoor retail store found in the Metro DC area.  I started this past week and it is going well... as far as I can tell anyway.  A huge answer to prayer!  I was also able to take part in my best friend, John Harkey's wedding before work started, so things worked out incredibly. 

  Now we are breaking new ground with an employed head of the home and a great place to live.  There are some good churches in the area and we hope to find a home at one of them soon. 

  Continue to think about us, and pray, as we care for Linnea.  Everything is NOT great all of the time, but it is a struggle most of the time.  Without full-coverage nursing Diana must wake up every 2 hours at night to give Linnea "treatments" and then the schedule is no less arduous throughout the day.  Even though Linnea has been doing fairly well, there have been days that have been horrible as her condition fluctuates.  Some days she needs a lot of supplemental Oxygen and those days make us wonder how close she is to going to be with the Lord, but then that day passes and is followed by another, and another, and another.  It is so hard to tell what will happen next and all we want is for Linnea to be happy, comfortable, and to feel loved.  I know we are taking good care of her, but how do you ever feel like you are doing enough when your child is ill and nothing makes them better?  Our perspective on life is changing and will be forever changed because of this situation and Linnea's apparent happiness is what drives us everyday.  Thanks for checking in on us.

PS- When you send emails asking for updates or commenting on the lack of them, it reminds me to write them.  Thanks for the reminders and please continue to bless me with them.

May 31, 2004

    This entry is sort of a reality check for our situation...  [Friday, May 21st, we almost lost Linnea due to a mucus plug that was brought on by another infection.  This time it is in her Right Upper lung, but it was not very bad.  At about 3AM our nurse woke us up because Linnea's Oxygen saturation was dropping and she could not stop it.  We started to "work" on Linnea by positioning her on her side and at a slight angle with her head down.  We were doing chest percussions and using the cough assist to try and get some of the mucus up far enough in her airway to suction it out with the.  This is fairly routine, but it wasn't working.  Her Oxygen saturation spent some time in the 30% range and then dropped to 11% and it would not come up. (70% and below causes brain damage if it remains that low for a long period of time, she is usually between 95 and 100%)  Linnea was unresponsive, her lips were blue, and her body was more limp than usual.  It was then that I realized we could lose her... and that was not how I wanted things to end.  I do not feel that God wants us to feel frantic, helpless, hopeless, or scared in the manner that we were feeling... so I stopped working, placed my hand on Linnea's body, and tried to somehow feel what we should be doing.  It is something I do often when she is crying or uncomfortable and we don't know what to do.  I put my hand on her, look her in the eyes, and talk to her.  I almost always know what to do after that.  This time was no exception; I knew we needed to stop.  I was overcome with feelings of peace as I knew that even if her heart stopped or she couldn't breath anymore, if it was God's will for her to live then she would.  I immediately thought of Matthew 9:24 when Jesus said "... the girl is not dead, she is only sleeping" and imagined what it was like for that man to see his little girl open her eyes.  God's purpose for her life was not complete.  If it had been then she would not have been sleeping.  Nothing we were doing or ever could do would keep Linnea alive longer than she needed to be for God's purpose.  He is completing a good work in her and through her and when He is done, she will go to be with Him.  I looked at Diana and said "we need to stop" and put Linnea in her arms and told her to sing to her.  I went to get Annabelle out of bed and we sat on the ground and sang "Jesus Loves Me."  Linnea opened her eyes, looked at us, and her Oxygen saturation started climbing from 11% up into the 90's.  It was amazing!  We then noticed that somewhere in the confusion her supplemental oxygen supply had become detached and we plugged it back in as well, but she was doing well on her own. After she became stable we put her BIPAP (breathing assist device) back on to help her stay calm and I called our Doctor.  After about 45 mins. on the phone we decided that it would be good to take her to the John's Hopkins ER to get some X-ray's done and have our Pediatrician look at her.  We did not want any IV's, blood work, or heroic measures done... we just wanted to know what was happening.  So, it ended up being a small infection and we went home the next day with prescriptions for antibiotics and breathing medicine.  It was been over 1 week since we returned home and Linnea is doing well as far as we can tell.  She is getting so big and her mind is growing too.  She is such a smart little girl.  We are still battling something that is causing her to have a lot of secretions, but she has been pretty happy despite having so much drool and having to be suctioned every 15 mins. or so.] 

    Nathan is still looking for a job and has had some promising interviews as of late.  We'll see what turns up!

April 23, 2004

    So we have moved to Maryland!  On April 16th Linnea and Diana flew with Mercy Med Flight from Centennial Airport, CO to Baltimore/ Washington International.  If you have not heard of Mercy Med Flight, you will now.  They are a one of a kind charitable air ambulance.  Their goal is this... "provide non-emergency charitable air ambulance transportation for people who need to travel long distances, and need medical care en route..."  They are a great organization and they run their missions completely on support and volunteers... amazing!  You can visit their site: www.mercymedflight.org and make donations if you feel so inclined.  It's not a bad idea.  Oh yeah, Nathaniel drove from Colorado a few days early and met them at the airport.  Annabelle has spent the last week or so with Grandma Nancy, Grandpa Doug, Aunt Amanda, and her cousins Calvin and Fiona and joined the clan here in MD yesterday.  So, we are all together again.

    Linnea has been needing practically NO supplemental oxygen WAAAYYYY down here near sea level, and she has been "talking" up a storm.  She still needs 15-20 min. respiratory treatment every 2 hours, but that is too be expected with her disease.  We have met our new doctor, Dr. Crawford, and his team at John's Hopkins University Hospital and they have been very helpful with our big transition.  We will see Dr. Crawford periodically, but we are taking care of Linnea and trying to get some nursing set up to give us (mainly Diana) some relief.  Diana has been holding up the fort while Nathaniel has been exploring our options in the fast passed world we call the East Coast... Nathaniel calls it "out here."  It is quite different from the quaint town of Leadville... actually, it's the complete opposite. 

    We are living in Laurel, MD with Carrie and Vince Stepanik.  Carrie is a good friend of ours from our rough and tough (military) days and their incredible generosity has landed us in the majority of their living space.  From here Nathaniel is looking for a job and we are trying to get 2 cars sold in Denver, CO.  A Subaru Outback, and the ill-fated Suburban.  Something will happen with them, rest assured.  So, in the next few weeks we anticipate that Nathaniel will have found a job, and we will be off to a more permanent residence.  Maybe a nice little colonial style house with green grass, a picket fence, and a babbling brook, but maybe not... we'll have to see.

March 11, 2004

    Things are going well with us.  Linnea is showing signs of respiratory improvement and she has been so happy lately.  We have been able to allow her to sleep more at night b/c she has needed less frequent respiratory treatments.  She is getting so big!  She isn't really sick anymore, so she is continuing to grow in every fashion and it is so fun... just as it is to see any of your kids grow up.  It has been a pleasure to care for another one of God's little children, special needs and all.  Her life is a blessing to us and everyone that gets to spend some time with her.  We will be adding some more recent pictures to the site soon, so check them frequently.

March 2, 2004

    It has been 1 week since Linnea has surgery and she is doing well.  She had a few episodes of respiratory distress over the weekend, but she is comfortable and happy today.  We are preparing for Linnea to come and stay at the Ronald McDonald House (RMH) with us as soon as her supportive equipment is all here and we are ready to go.  That means that our family can finally be together again as early as tomorrow (3-2-04)  When we do move her to the "House" we will be taking care of the many therapies that she receives throughout the day and night.  Every 2 hours, and sometimes in-between, she needs different types of care to help her with her breathing.  We are strategizing how we will handle this sort of schedule. 

    We have been working on some insurance changes that might allow for Linnea to be medically transported.  Our plans are to stay here in Colorado until June, and then move east where family and help is readily available. 

    Annabelle has been doing great with her multiple babysitters.  God has given her an incredible and understanding little heart and she has been so sweet and sensitive to our needs and changing schedules.  Kim Elliot is a gift from God as she has been coordinating all of our volunteer needs.  The families and individuals that have helped us take care of Annabelle and sit with Linnea have been a tremendous blessing!  Diana's mom was here for a couple of weeks and Nathaniel's mom is on her way out to help for a while too.  Also, Nathaniel's best friend from High School, John Harkey and his fiancé, Erin are going to be out here next week to spend some time with us. 

    That is all for now really.  Thank you for your prayers!  Among others things, God has given us the comfort and strength that we have needed to endure this change in our lives.  He is good and His plan is perfect... that is an exciting thing! 

February 24, 2004

    Linnea had surgery today and there was much anticipation beforehand.  We chose to have this surgery in order for her to get a "G-tube" for feeding, and a "Nissan" wrap to prevent her from refluxing.  Before the surgical procedure the Pulmonary doctors cleaned out her left lung, which has been collapsed for over a month.  The risks involved in this procedure mainly had to do with her being on a breathing tube for the procedure, and then taking her off of it.  Her muscles are weakening so there was no guarantee that she would be able to breath on her own again.  God is good.  Linnea is doing well and she started smiling at us again shortly after surgery.  She handled everything with grace and everything is going well.  With this new feeding tube and wrap, we will be able to better maintain her health and comfort, so that is good!  She will most likely be leaving the PICU (pediatric intensive care unit) tomorrow (2-25-04) and there is a chance that we can take her home with us very soon.  Home is at the Ronald McDonald House in Denver, CO for now.  Praise the Lord, for He is good!!


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