About These Last Six Months

The last six months have been the hardest six months of my life thus far.  It wasn't any one thing, but there were definitely some things that have been harder than others, but even small trials seem harder to bear when there are big trials challenging you every day.

If you only want to read about the happy stuff in my life, scroll down....way down....

On the other hand, the article Your Painful Story Brings God Glory, by Laura Story, is what pushed me in the direction of sharing my struggles here.  I hope that reading what I have and am going through will help someone in some way, even if this post isn't an "I've made it through this trial" kind of post.  This is an "I'm in the middle of trials, but I know that God is here with me" kind of post.

In my last "real" blog post, I shared with you that Jessica and Jon had received a diagnosis that their little baby had Trisomy 18, or Edwards Syndrome.  Walking this road with them has been the hardest trial in my life thus far.  I watched as my precious daughter purposed to love Matthew and appreciate every day they had with him, never knowing when his last day might be.  I was privileged to go with them on several of their trips to Seattle to see specialists at both the University of Washington Maternal Fetal clinic and the fetal echo-cardiograms at Seattle Children's Hospital.  

Due to the generosity of a friend, they planned outings to make memories with Matthew on each trip!  I was able to go to the Woodland Park Zoo and walk around Green Lake.  We had lots of fun as we tried different ways of including a tiny little pajama outfit in photos to show that they were making memories of their journey with Matthew.  Jessica and I were busy knitting and crocheting everywhere we went.  She made the most beautiful little sweater set and blanket and I was working on some cocoons. There were highs and there were lows, good days and bad days.  Sometimes I grieved for myself and the grandson that I had hoped for, other times I grieved as I watched my daughter walk through this valley.  

Just over a week before they were scheduled to be induced, Jessica couldn't find Matthews heartbeat.  They had a borrowed doppler so she could listen for his heartbeat each day, especially if he was not moving.  They heard his heartbeat that morning, but after a nap they listened again and it was gone.  They headed to the local ER to confirm and found that Matthew had passed away.  Then they packed up and headed to Seattle to be induced.  I joined them the following morning after a sleepless night.  The induction lasted from Sunday night until just after midnight on Tuesday.  She was laboring most of the time, but the labor had times of intensity as well as times of rest. 

As her mother, it was so hard to see her labor in grief.  As a grandmother, it was hard to know that my first grandson would be born sleeping.  The silence of a labor room without a fetal monitor was profound.  More profound even was the moment of his birth.  As he was laid on Jessica's chest, I kept waiting for him to move, to cry, to live.  But that moment never came.  The intensity of this hour was nearly more than I could handle, I cried out to God to comfort them,  I grieved so intensely that physically I was falling apart.  I came very close to fainting, so I left the room.  I did not want to draw attention to myself. Their moments and memories of Matthews time with them needed to be about them, not me.  I figured that the nurses could scrape me off the floor in the hallway if needed.  I was able to make my way to a bathroom far from their room and cried my heart out in wrenching sobs. I have rarely cried this hard in my life. After a time I was able to go back to their room and marvel over Mathew's beauty.  His perfect little facial features, his tiny little hands.  Watching them lovingly and carefully dress him and wrap him up in a soft white blanket.  I stayed with them for a few hours, taking photos and listening to them and I even got to hold him for a while.

 So precious, so loved, so tiny, so still. 

Jessica has blogged about Matthew's birth in detail, if you want to read it go to her blog, Matthew's Life.
My sister, Lisa, lovingly made this photo collage for Jessica and Jon

Daryl came down to Seattle and arrived mid morning, and we were to drive our separate cars home, but together as I had not slept since Sunday morning and it was now Tuesday. I made plans with Sam, my daughter-in-law, and Cindy, a dear friend, to go to Jessica's apartment and do some cleaning there. In the weeks before Matthew's birth, Jessica had been sick with a fever for over a week.  I wanted them to come home to a clean apartment and have dinner waiting for them there.  The plan was for me to take a nap and then do the cleaning....but I was still unable to sleep and, by then, unable to stop crying.  I made a call to my doctor's office and requested sleep aids, which they did prescribe for me and have been invaluable to me since then, but I only use them occasionally.  I just could not make my brain shut down and when I tried to sleep, all I could think of was Jessica, Jon and Matthew and then I'd start crying again.  Working was therapeutic and I was so thankful for the presence of Sam and Cindy. Talking with them was so good for me. I stuck around until Jon and Jessica arrived, then ran a few errands for them, including buying Jessica a pretty, comfy nightie to wear as well as some pajamas for me - I had found rayon pajamas on a clearance rack!  It was such a blessing to me and to her as well.  Then I headed home and was finally able to get some sleep.  Over the next few weeks, I helped Jessica as best I could as she recovered.  She had a difficult recovery due to the long, difficult labor.  It was good for me to do this as it also helped me to begin to grieve as well as gave me some time away from home to rest and recover as well.  

Matthew's graveside service was held soon, and he was buried just inches from where our daughter, Johanna Marie, was buried.  There was something very special about God orchestrating this.  That day was also very hard.  To watch my daughter walk next to her husband as he carried the tiny white casket to the hole in the ground, and then later to watch as Jon and Daryl lowered the casket by hand into that deep, dark hole tore my heart. 

During those months of Jessica's pregnancy, Matthew's death and birth, I struggled in many ways. 

Physically I was challenged through sleep deprivation.  Christy had been put on oxygen at night to support her heart and lungs as she still has sleep apnea, and the echo-cardiogram had revealed that she has an un-repaired ASD.  She did not, and still does not, like wearing a nasal cannula.  She would fuss and cry.  Esther is very sensitive to her crying and it upset her.  If I was not in the room and Christy was fussing, Esther would first go to her crib and try to comfort her, saying over and over, "it's OK, it's OK."  Then she would come to my door and knock until I came out and cared for Christy.  This led to my staying in their room each night until Christy fell asleep...which was invariably after 11 pm.  Starting back in January, when I had been with Christy at Children's Hospital for her sedated dental work and MRI, I had aggravated my knee injury and did something to my back.  After a few weeks on crutches, my knee found a new happy place, however my back did not.  I mostly ignored my back pain until I couldn't stand it, then I'd go to the chiropractor and get adjusted.  I was dealing with back spasms every night, I just didn't know it.  I had also been struggling with what we though was an ulcer (since my ER trip the previous December), but just couldn't/wouldn't find the time to get a proper diagnosis.  Add to all that the daily stresses of caring for a large family and Christy's ongoing medical challenges.  Matthew's birth/death caused me to reach a physical crisis.  My stomach was raw, my back was causing nearly constant pain, and I was definitely dealing with adrenal fatigue as well.

Emotionally I was into uncharted territory for me.  I was a mess.  On top of grief and daily stress, I was dealing with imbalanced hormones.  I felt fragile.  I was definitely falling into depression.  I was having moments of something like panic attacks.  I was coming unglued so to speak.  I felt like if some new trial came, I would just break. I forgot to mention that this past summer, in August, I learned that a friend, Diane, with whom I had been extremely close for many years (but had drifted apart from her over the last 10 years or so), had committed suicide.  This was definitely also an emotional stress as I was grieving the loss of a friend and had many regrets of having allowed our friendship to dissolve.  We had been in contact occasionally, but hadn't connected as friends in many years.  As my emotional state began to deteriorate, I began having dreams about her, and this was adding fresh grief to my already unstable emotions.

Spiritually I am also a mess.  I allowed Matthew's diagnosis to derail me spiritually.  It's hard to describe, but it was like I had the spiritual reaction of how a child would react to getting a shot.  I recoiled.  I curled into a ball and refused to come out.  It is so hard to describe.  It's almost like I held tight to my grief, yet ignored it.  I hurt to badly I couldn't face it.  It felt as though God had hurt me.  I know this is not true, but that is the best way that I can describe where I was.  After Matthew's death and birth, it got worse.  My pain was so raw, my strength so low, that I just couldn't go there.  My quiet times were few and far between, and my prayers were too.  I knew I needed to reach out to God, but something inside me was not ready to let go.  I think it was the beginning of November that I knew something had to be done.  I made an appointment with my pastor.  I shared with him my ongoing struggle to get sleep as well as my spiritual situation as best I could.  I knew I needed to dwell on who I believed God to be, to remember His promises to me as His child.  When I got home I looked through my bookshelves to a devotional that Pastor Mark had recommended and that I knew I had.  I was unable to find it but I did come across a book that I had no idea that I even owned!  Some time, I have no idea when, this book came into my possession, but I had "shelved" it.  It is a book by Kay Arthur, "God, How Can I Live."  I knew that God had meant for me to find this book at this exact moment.  That in and of itself was more comforting that I can tell.  Since then Pastor Mark has also given me another book that also has been very helpful, it is called "New Morning Mercies" by Paul David Tripp.

Here are some quotes from "God, How Can I Live" that have been particularly helpful:

"Thus (after quoting James 1:13) when adversity comes into your life, precious one, you can rest in the fact that first it had to be filtered through His sovereign fingers. And those are fingers of love, for God is love...."I can't understand it. It doesn't seem fair!" Is that what you are thinking? Remember, God's ways are not your ways, His thoughts are not your thoughts. Faith submits, taking God at His word and resting in His Character."
And after talking about Job chapter 1:
"O precious child of God, are you in great travail of soul because of some adversity? Fear not! Your Father is filtering it all through His fingers of love....Trust in Him, and it will result in good."

Do you realize what peace would be yours if you would only believe what God has said and bow your knee in humble, trusting thanksgiving. Then you would cease replaying bitter memories of horrible days gone by - days that have been overruled by His promises and His sovereign rule. With a touch....they have been turned to good - your eternal good.....May God grant you the blessed ability to see all of life through the prism of His infallible word.

Our tragedies are permitted for two reasons: that we might become more like Jesus and that others might see the reality of our God and long to know Him as we know Him. 2 Cor. 4:11
The more trials we experience, the more we become like Jesus, if we appropriate His grace. Therefore, all of life, whatever it brings, prepared us for eternity.

I wanted to share my journey with you now, before I am on the "other side."  In the past I have always blogged about good times, fun memories and such.  But I think it is important for people to be transparent when they are going through trials.  Reading about Kay Arthur's trials and hearing of trials of others can be comforting, especially when you hear how God is comforting them in the midst of their difficulties.  Since that low point in November, I have been working to find the source of some of my difficulties.  I have found some things that have been helpful, but if my lowest point was a minus 10, and being strong and healthy is a positive 10, and being just OK is zero, I vary between a -8 and a -4 now.  It doesn't take much ( a few bad night's sleep for example) and I find myself crying whenever I am alone, again.  I have days where I can feel God's presence, but most days I still feel that I am in a spiritual battle ground and that I am losing the battle.  Since my low point, I had taken a fall (literally) and have aggravated my knee injury.  My back pain reached epic proportions and I ended up going to the urgent care clinic.  I have since been on 12 hour prescription pain meds, muscle relaxants and I am now going to physical therapy.  My chiropractor and my physical therapist have been able to get my back into alignment, but it goes back out easily.  My L5 disc is the source of my problems, and needs to heal.  I can't sit in church or in an upright chair for more than a few minutes without my back going into spasms.  Also, my stomach is still causing me pain, mostly at night but also when I am upset about anything (for example, my back pain often causes me to feel nauseated which leads to stomach pain...).  I had an endoscopy done and the preliminary result was erosive grastropathy...basically the lining of my stomach is eroding away.  I won't know the cause of this (it could be viral, bacterial or just the result of constant stress) until the biopsy results come in. But there is some comfort knowing that my stomach pain is not my imagination!  

For the first time in my life I am dealing with multiple physical ailments, two of which are the most debilitating I have ever had (my knee has been worse before).  Any of the three can cause me to not be able to sleep or function at a normal level during the day.  I am also dealing with anemia (could be caused by my stomach problem as it can inhibit absorption of nutrition) and low immunity/recurring infections (7 rounds of antibiotics in the last 8 months, two for a jaw infection after getting a tooth extracted, the rest for recurring sinus infections).  I take dozens of natural supplements to try to help with these ailments, but I don' seem to be making any headway (I am currently on antibiotics again...).  Emotionally I am still up and down....sleep deprivation plus grief as well as dealing with nearly constant pain can really get me down at times, especially at night.  

Wow, this is such a downer blog post!  Oh - and I forgot to mention that Dayton (11 years old) had his appendix burst and had emergency surgery on Thanksgiving Day, and spent four days in the hospital!  He is doing great though.  For that I am more than grateful!  Daryl was able to stay with him nearly the entire time, as I was still dealing with my latest sinus infection.  And, we have had two stomach bugs run through the family as well as two different colds in the last three weeks.  Currently all four little girls are sick with a bad cough, Carese is the worst at the moment, running a fever all day yesterday. Christy showed signs of coming down with this cold yesterday.

I hope to blog again regularly and keep you updated as to what God is doing in my life.  I keep reminding myself of what I believe about God:

God Loves Me, enough to send His Son to DIE for me!
God knows what is best for me
Every trial comes into my life after it is filtered through His loving hand and is for my good and His glory.
God has this - He is in control, nothing surprises Him. 
God has a plan for my life and my family - to prosper me and not to harm me

I know that my heart will follow where my mind is, so I know that if I dwell on the truth of God's love for me and His promises, I will eventually begin to feel it in my heart and soul once again.

***You MUST read my blog post, Into Darkness and out by Grace to get the whole story...all that you just read did not bring me out of the darkness and depression, it only gave me a short, partial relief...I went back under. But the story doesn't end there!  PLEASE READ!***

So - time to look at the bright side of my life! In the last 8 months, there have been some good times.  


In July I got to spend the day with Jonathan, riding in his big truck!  It was a fun day, and I was surprised how different things look from 10 feet off the ground!  It was also enlightening what truck drivers have to deal with and I am more considerate of semi-trucks on the road now!


Last July we had a work party here where friends came over and helped us put more of our land into lawn, paint and clean up the front of the house to prepare for a new appraisal in hopes of getting rid of our mortgage insurance.  It did pay off - our appraisal came in around $30,000 higher than the last time!  

While we weren't able to do exactly what we had hoped, we got to do something even better - refinance our mortgage, with a lower interest rate and cut out three years (went from 23 years left to a 20 year mortgage).  Our monthly payments will be lowered by roughly $400/month.  We close on our new mortgage in just over a week from now!

We started watching Once Upon A Time (OUAT) last summer, and found out that it is filmed just across the border from us!  I have been able to go to Steveston, B.C., AKA Storybrooke, and watch the filming three times now. 

The last time I got to meet Robert Carlyle (Rumple Stiltskin in OUAT, as well as a villain in a James Bond film!), get a photograph with him as well as getting his signature on a OUAT playing card that I bought in Steveston! 



 We had a party at the boys' apartment where we all chose a character and dressed up, then we streamed the season premiere!  

We had a great time, but Carese was a little freaked out at my "new look"!  Daryl still dislikes the photos of me dressed as Regina/The Evil Queen!  LOL!  Rebekah dressed as Zelena was the most accurate and mind boggling imitation!  Zelena is the Wicked Witch from Oz in OUAT.

Christy Update:

Christy celebrating her 5th birthday, August 5

Christy standing
all by herself!

Christy had some testing done in October.  Her echo showed the same as what we saw last spring, so that's OK.  Her hearing test showed that she has perfect hearing. Her MRI showed that her brain and its vessels are stable, and that was very good.  

Christy LOVED being in the pool this summer!
She also did great camping for an entire week!

We have now finished all the testing that needed to be done since she came home.  She will only need to go to Children's for periodic evaluations for neurology and cardiology and possibly dental work.  She had a dental exam this fall and her teeth looked great!  She even lost her first tooth about two weeks ago! I was not expecting that to happen already! She just doesn't seem old enough to lose teeth, but at nearly 5 1/2, she most certainly is!  

She continues to be a daddy's girl, but does snuggle with me on occasion!  She has recently began to put her left arm through her sleeve when she is getting dressed, and this is a huge milestone for her...she has always made getting dressed and undressed as difficult as possible.  

She now has a stander (she needs to be bearing weight to build bone mass and core strength. We found out this summer that her hip sockets are not fully formed so she is at risk for dislocation), a walker (on loan, but one has been ordered for her) and enjoys running around the house in it. 

 We also got an adaptive stroller for her since she has outgrown most strollers now - she grew 4 inches in the last year!  I also just sent in an application for handicapped parking permits and I am looking forward to being able to park closer to buildings when I have her with me!

Esther has had a very healthy summer and fall.  She has weathered a few colds.  She continues to communicate through sign language, but she knows hundreds of signs now.  She understands everything you say to her.  She loves to sing, especially songs in movies like Frozen!  She LOVES Once Upon A Time, especially the bloopers!  She will imitate every motion from those and it's hilarious!

Other milestones in our family:

Rebekah got her driver's license this summer, Rachel is working on getting hers.  Both girls are working a temporary job for the holidays, working for a former classmate of one of my siblings, at the Lights Of Christmas at Warm Beach.

Reuben has been working at Perry Pallet since early spring and will probably get his driver's license this week. 

Reuben and Rachel are gearing up for another great season of Bible Quizzing and both hope to be able to go to Nationals again this year!

Daniel is growing like a weed and has become my right hand man at home since Reuben is gone so much.

Dayton is doing better in school this year and loves to play with his Legos

Elizabeth is going weekly to a friends house and gets to ride horses!  She loves this!  She is a big helper for me, especially right now with the big girls gone on the weekends!  She got braces earlier this year, but has them off already and has a special retainer that is helping with her lower teeth.

Carese is growing and is such a big talker.  Some of the things she says are hilarious!  She is a climber and seems to always have a bruise or two from falling while balancing on something!  She is such a mommy's girl.  She loves to go places with me, but gets panicky if she thinks I am not at home.

We've had some good times in the midst of our hard times, and for this I am so thankful!  I have so many blessings to be thankful for.  It's hard for me to share hardships, and to share with others when I am hurting, especially when I am in the midst of things. I love to share how God has worked in my life in the past and how He has done wonderful things and shown Himself to be faithful.  It seems like I am so slow at growing in Christ when I can still be so slow to run to God.  I am re-reading Stepping Heavenward for the eighth time now, and find such wonderful truths there, as well as challenges to look to God and focus on living for Him each and every day.  I fail so often.  Elizabeth Prentiss, the author of Stepping Heavenward wrote the hymn, More Love to Thee.  Her little novel and all her written works prove that this was her goal in her life.  I want to make it mine, but I seem so often to forget that I even want to love Him more, and end up being self absorbed and throwing my own pity parties.  More often of late, especially when I can't sleep at night, I am crying out to God, and I know that this is His doing, His calling to find comfort in Him.  For He is the only true place of comfort.

So, if you think of me and my family in the weeks and months to come, please pray that we will all seek Christ, run to our Father, bend our wills to His, and above all to bring Him glory through it all.

Christy Has A New Toy!

I know, it's been forever since I blogged.  I promise I will resume soon, but the last 5 months have been some of the hardest months of my life.  I know the last time I blogged I posted that our daughter, Jessica, and her husband, Jon found out that their little one was diagnosed at 20 weeks gestation to have Trisomy 18.  Jessica began blogging about her experience, and I recommend that you check out her blog, Mathew's Life.  Matthew was born sleeping on Oct 6 and he was a beautiful, tiny little baby.

The reason for blogging today is to share with you (and her therapists) how well Christy is doing in her walker!  This walker is on loan from Peace Health Children's Therapy where she recieves Physical and Speech therapy on a regular basis! As you can see from the videos, she has grown taller in the last few months and has new knee braces that allow for bending but make it very hard for her to hyper-extent her knees.

This first video she has the wheels all locked so she can only go forward and has slight resistance and she can not turn:

This video shows her "free wheeling" where all wheels can turn/go forwards and backwards and no resistance

This last one is her going away from the camera with wheels locked as they are in the first video

A Quick Update on my Girlies!

Christy was able to go home with Jessica  on Tuesday, the same day that Esther was able to leave ICU.  It took until late Thursday before Esther was able to come home.  We are managing their medication/breathing treatments and it is finally getting easier now that Christy is doing fine without the bigger pain med, oxycodone.  And by eliminating that one, she can also go without the stool softener and the antihistamine as she needed both of those to deal with the side effects she was suffering from taking the oxycodone!  Now she's holding her own on Ibuprofen and Acetaminophen.

Since Esther tested positive to Rhinoviruse or Enterovirus, we are keeping Christy in a corner of my shop, but as of today she also got to play on the floor in my bedroom (this made her VERY happy).

Life with a G-Tube is so much easier than with an NG-Tube, but the recovery/pain (but it's hard to tell what is tonsil pain and what is G-Tube pain) has been difficult.  But it's getting easier every day!

Here are some photos of the girls from last week:

Christy place - all her needs met in one place!

Esther waiting for Daddy to drive up to the hospital and bring us home!

A New First - Two Children Hospitalized at the same time....

And hopefully it will the last time....

For those of my readers that like the quick overview, here's what has been going on:

-All kids came down with bad cold within 5 days of first outbreak (starting on 11/5)
-Esther got the cough but had improved by day 4 (last Tuesday)
-Esther gets rushed to our local ER with respiratory distress Wednesday night and is admitted with Jessica staying with her
-Thursday morning Christy goes to Seattle Children's for her scheduled G-Tube placement/tonsils & adenoids removal, Esther improving throughout the day
- Friday morning Esther takes a turn for the worst and is sent via helicopter to Children's Hospital
and at the same time the Rapid Response Team was called in for Christy due to continued increased -need for breathing support. (Jessica goes in helicopter, Daryl drives down here)
-Friday afternoon Christy improves after some respiratory work and breathing treatments, but Esther ends up in ICU
-Saturday Christy is improved enough to be discharged, so we get a hotel for Jessica, Reuben and Christy (Jessica's fiance, Jon, brought Reuben with as a chaperon but ends up staying as support for Jessica).
-Sunday - Esther is finally no longer getting worse but is not improving either, Christy is brought to ER late in the day, but the redness/discharge is normal so they go back to the hotel.  Esther has another miserable evening and needs higher level of sedation to sleep.

Esther in the ER the first evening.

Almost two weeks ago Reuben came down with a nasty cold.  5 days later everyone of the children had it in some way, shape or form.  I took Esther to see the pediatrician on Monday just to play it safe, as she had gotten the cough and she has had pneumonia two times before.  He said she was doing well, but prescribed steroids to start the next day, but only if she was worse.  The next day she was better, so I did not give her the steroids, but continued doing breathing treatments.

Napping during per-op

That same day, Tuesday, we got the call to let us know what time Christy's surgery was to be (we were to check in at 10:45).  We talked about this cold (Christy had only developed a small cough over the weekend, but had seemed fine starting Monday), and they mentioned that Christy might end up being sent home if she presented with cold symptoms, so I got proactive and brought her in to see a pediatrician and get her opinion, and she said that Christy sounds and looked great.

pre-op, checking out her bracelets!

Christy had a rough night as she got a hold of Carese's pizza (she's allergic to tomatoes) and ended up being up a good portion of the night with stomach cramps.  Esther's breathing sounded fine so I didn't do the "every 4 hours" breathing treatments through the night as I had been since Saturday.

All set for surgery

Wednesday was a busy day with orthodontist appointments and packing for Christy's trip to Seattle Children's Hospital for her planned surgical procedures.  During dinner time, Esther began grunting.

After two breathing treatments she was still getting worse so I rushed her to the ER. She was getting worse on the way there even.  In the first little while in the ER she declined even further, becoming unresponsive to all but extremely painful procedures.  There was talk of sending her to Children's, but then she began to respond to their treatments enough for her to stay there.  Jessica stayed overnight with her so I could get some sleep before taking Christy to Seattle Children's Hospital for her surgeries(G-Tube, Tonsilectomy/adenoidectomy).

Chiling during Christy's surgery

On Thursday Christy had her surgeries and all went well, but was a long day.  Esther was back on room air and doing remarkably well.

Christy in recovery

Friday morning, Christy had been in a slow increase in the need for oxygen and it was becoming concerning so they call the Rapid Response Team (RRT). While the team of about 8 people were in our room, I got a text from Jessica that Esther had taken a severe turn for the worse and that they had no idea why and she was not responding to the highest level or oxygen that this hospital could give her.  Back to Christy - they made some changes, including just having her position changed, and she responded well.  But that time, I had been notified that they were preparing Esther to be fown to Children's via the medical helicopter.  Talk about overwhelming!  But God upheld me through even this.

Christy the next morning, just before they called the RRT

Later I actually heard the helicopter land and was soon able to go see Esther.  She was struggling and mad, but working so hard to breath!  Jessica went to be with Christy once she had given them Esthers recent history.  After about an hour or so, they moved Esther onto the floor (I got to ride on the bed with her as she wouldn't let me out of the bed), just 4 doors down from Christy.  Throughout the afternoon we were able to go   from room to room, but being very careful with hand washing as they were testing both girls for viruses.  Esther was presenting viral symptoms and Christy had some yellow junk come up when they removed her breathing tube after the surgeries.

Christy sitting up for the first time

Daryl has driven down after Esther left in the helicopter, and this was about when he showed up.  Being the Daddy's girl that she is, she lit up when she saw him!  By this time she had actually sat up a few times and seemed to be recovering nicely!  Daryl also got some snuggle time with her daddy, even though she was feeling so miserable!

Over the next couple of hours, Esther continued to struggle more and need higher amounts of oxygen, as well as struggling against using the mask.  So they called the Rapid Response Team to her room to evaluate her.

Snuggling with Jessica too!

It was decided that she needed to go to the ICU.  Soon she was transferred up there (I road with her in the bed again!).  In the end she was given in IV, placed on high flow oxygen and a sedative to help her deal with all the hard stuff of having so much taped to your face and attached to her.

AFter the decided to move her to the ICU
she actually calmed own for a little while

When she didn't have enough sedation she was miserable - she was getting ibuterol 24/7 with the oxygen, plus steroids via her IV.  These all worked to make her jittery, jumpy, angry and frustrated.  She wanted to tear everything off and throw any and all toys across the room.  She was miserable.  It took a continuous re-evaluating to keep the level of steroids right.  Friday night was a long night and I only got about 3 hours sleep, and not all at once.  Daryl watched over Christy so Jessica could get some sleep.

On Saturday, Esther had not improved but was no longer getting worse.  Christy was getting better and they had determined that she could be discharged.  Jessica's fiance, Jon, drove down We decided that the best plan was to get a hotel room and have Jessica and Reuben stay there with Christy and care for her there until We went home or Jessica felt competent to care for her in our busy home (post surgery is quite intensive care - pain meds around the clock, plus G-Tube site care and tube feedings plus watching for infection.

Esther in ICU - she looks so little with all equipment!

The logistics of getting Christy discharged and over to the hotel were quite overwhelming as some things needed to go to Christy's room, and others to the hotel, and we had laundry that needed to be done.  God orchestrated things so that I had just the help I needed. I had posted on the International Down Syndrome Coalition FB page, requesting prayer for our situation, and from that Heather Y was able to come and help me out!  We had never met, but she has a son just 3 months older than Esther who also has Down Syndrome.  We enjoyed sharing our stories and we found that both our kids were at Children's at the same time even!  She even brought some toys for Esther and some treats for me!  What a blessing and such an encouragement to know that God was orchestrating things for me in such an amazing and special way!  She also brought her 8 year old son and I enjoyed getting to know him - he was so sweet and so smart!

Having Heather with me worked so well as she could stay with Christy while I ran errands.  She also helped me move things to Christy's room (it was more than I could carry), and she also made it possible for Reuben to get dinner.  And then just when we really needed even more help, Daryl's brother and sister-in-law showed up with some nice things for Esther and myself (Starbucks Gift Card Yay!).  This enabled me to get Christy out - they helped me move out of the room, pick up Christy's prescriptions, get the car packed and warmed up and on our way!  It could not have gone better and it would have been a nightmare/extremely difficult to do it all on my own!  I arrived at the hotel just minute before Jessica and Jon did, so they were available to help get moved into the hotel room - another amazing providence as they had been shopping since noon and by now it was after 6 pm, and yet they arrived at the hotel at just the right moment!  Eventually I made it back to the hospital with a late dinner for Daryl and I.

That night Daryl stayed with Esther and I to enable me to get some much needed sleep once Esther was asleep (the most sleep in a night in over a week was not much, and interrupted often!).   Esther had a very difficult evening, and only wanted me.  She fussed and cried and yelled and got mad and was miserable.  Finally, after midnight, a does of tylenol (I think she gets headachesand a higher level of sedation finally enabled her to sleep, which meant that I could sleep.  Somewhere around midnight I lost it was was crying hard.  Esther was starting to settle down then and she noticed that I was crying.  She started patting my arm and saying to me "it's OK, it's OK" - well that just made me cry harder it was so sweet and touching.  She is so loving and caring so it's doubly hard to see her be so sick and feeling so miserable!

Esther Monday morning, finally sedated enough to sleep

Sunday was another day of Esther staying the same.  No improvement, but no regressing either.  She had a difficult morning and evening again.  Daryl headed home just after dinner so he could return to work on Monday.  It was again after midnight before Esther was able to sleep, and it actually took adding a second/different sedative.  Having had more sleep the night before and also a nap, helped, but it was still  long, difficult evening.  Christy ended up with some redness and discharge and Jessica was having trouble managing her pain, so I had her take her to Children's ER to have her looked at.  They said this was normal, but to watch for it worsening.  She went back to the hotel with Christy and they both had a relatively decent night - Jessica has to get up at least every 3 hours to give pain meds, but thankfully they are given through the feeding tube so Christy doesn't have to be woken up!

This morning Esther was noticeably improving, but Christy had a rough morning.  But by adding the third pain med back into her routine, Christy was able be comfortable.  Esther was having time of being upset, but she was able to rest comfortably while Reuben stayed with her while I went out and did some shopping.

When I returned, she was fine, but then she started being miserable again, they upped her sedation but it didn't help, it was getting worse.  Then the nurse checked her IV (which had been fine just 45 minutes before) and the IV had come out of the vein and had begun to infiltrate into her arm - ouchies!  So the doctor came and decided that Esther was ready to go to just a nasal cannula with getting her ibuterol via inhaler.  She has done fine!  I even got to give her a sponge bath and she got to drink apple juice (she got a feeding tube yesterday as she hadn't eaten since Wednesday and she wasn't allowed to eat or drink when on high flow oxygen or she would risk aspiration).  She perked up like nobodies business!

Soon after that we got a visit from Child Life and she asked how they could help us get Esther more comfortable.  She was able to bring a portable DVD player with some movies that she had not seen in while, including Toy Story 3!  This did help her to calm down.  They also brought a cloth doll which she has enjoyed holding.

Esther since then has had very little interest in sleeping, plus they are doing her Ibuterol every hour.  I was able to sleep from midnight until 4 am, but found out that Esther had only slept a little over an hour, but had been content to just hang out in her bed while I slept.  Since then I've been letting her watch movies.  She is still working hard to breath, but mostly just breathing fast and not so much hard work as her airway is much improved, but can be on room air while she is awake.  She is still shakey and has not shown interest in getting out of bed, thankfully.  She prefers the bed over the recliner too.  She has even eaten some jello and continues to drink apple juice so I think they might let her try some real food for breakfast and if that goes well, she will be able to have the feeding tube out!

So today, Jessica is taking Reuben and Christy home, and if all goes well, Esther will go out out ICU and should be going home Wednesday or Thursday!

This has been a most challenging week for all of us, but God has given me grace and strength for each moment.  Even though at times I felt overwhelmed and cried, comfort and strength to go on was ready and waiting, I just needed to turn to my Lord in Prayer!  Please join me and others in praying that Esther will go home soon and that Christy will continue to improve and need less pain reliever soon and that our adjustment to caring for these two at home (and the long drive home) will go well!

I will try to post again once she is on the floor, but it might not happen.  Just remember that in this case, no news should mean good news!