Wednesday, January 22, 2014

Victoria's last few months and a little more...

Some of you may be wondering a bit about Victoria's last few months, so I thought I'd share a bit about them...first, though, I thought that I would look back a bit....
When Victoria was first diagnosed with holoprocencephaly, we were told she could not and would not be able to live past birth...they hurried Bruce over to see her after she was born...she was not breathing.  As he looked at her (after they suctioned her), he noticed her chest moving up and down.  She was alive!  We rejoiced in the blessing of getting to meet her.  They hurried her over to me before I was even stitched up for a "Hello" and "Good-Bye" kiss and a little adapted snuggle (it's hard to snuggle when you are still in surgery).  We rejoiced when she lived through her first night and long enough to meet all of her brothers and sisters.  They told us that she was just surviving on my hormones, so we rejoiced when she survived the 3-1/2 hour trip home.  We celebrated when she lived a week and then a month.  At 6 weeks she was able to get a shunt to drain her CSF.
She survived the surgery and had immediate relief!  This pic is taken soon after surgery when she was still in PICU.  It sure got easier to care for her with her fluid draining.  At 3-1/2 months old we were discharged from hospice, and we rejoiced.  She passed her 6 month birthday and we started to think we might actually be able to care for our daughter much longer than we thought...and we were so thankful.  The months passed... she was with us for her 1st Christmas

Soon February came, and we celebrated her 1st birthday.  She was at the hospital at the time, facing the biggest challenges of her life.  I wasn't sure she was going to survive that hospital stay.  She was so sick.  God still had a plan for her life, though...and we brought her home...still recovering and with a g-tube for nutrition, but we were glad to be home.

  She recovered well, and started to gain weight and we were so thankful.  As her needs changed, we adapted.  Things which seemed a bit scary from a distance were not so bad when we faced them and each time we need to face something new, there was strength there at the right time.  She recovered so well, and was really a pretty healthy little girl.  Victoria was special to us from day #1, but as the days passed, she became more and more a special part of our family.
This was taken on Victoria's 3rd birthday.

We went camping with her and she was a great little camper.  Top two camping pics were in 2010, the middle at Gooseberry Falls in 2011, and the bottom two August this year.  We took her out blueberry picking...yes, she did try mushed blueberries. :)  We took her along hiking, to parades, fireworks, shopping, the fair, church, weddings for long walks...

We also enjoyed winter with Victoria.  She came along to Bemis Hill...and though she hung out mostly at the chalet by the fire, I did walk down the hill aways and give her a short sled ride.  We also pulled her in the Marie's arms..a perfect outing for a sunny winter day.
Here she was trying on her dress for Benjamin and Emily's wedding...She went many places with us but of course much of her time was here at home.  At home, she was our little "Buddy Heater" on a cool day...she was always ready for a snuggle.  She was there at meal times, when we worked on school work, during our time to read the Bible together and when we sang together.  At story time, she could often be found in our arms getting in on stories with everyone else.  When we baking, she was often right near us as we worked...and managed to get a snitch or two.

She woke us early every least one of us each day.  We were so thankful that she usually slept through the night.  Matthew made sure that she tried our "1st snow of the year" donuts and any other treat he thought she might enjoy.  He made sure she got a little blueberry pie on Thanksgiving day!  If she had a little chocolate or blueberry or caramel around her mouth, I knew Matthew had been sharing... :-)  She often slowed us down (in a good way).  When she needed a cuddle or a new position or was just not feeling the best, we left other tasks and cuddled  (often with a book or a kindle in one hand) and didn't worry if a job had to wait a little longer to be accomplished.

In July of this year, Victoria had a bit of acid reflux.  Giving her a bit higher position when she was getting her morning feeding quickly solved the problem, and we were thankful it was such an easy solution.  In August, we travelled out to Munising, MI where we met up with Bruce's brother, Steve and his family.

I was able to  adapt a pack n' play type bed for her, and she did very well...even though the weather was a bit chilly.  In late August, she had a couple of days it seemed like her shunt was not functioning properly, but it resolved itself, and we were thankful.  In early September, she had her best physical therapy session ever.  She did so well, that I began to really look forward to her gaining head control.  She was doing so well, and her overall health was so good.  A little later in September, she was having signs of shunt malfunction, so we headed down to Gillette.  They found that the shunt was functional, but not functioning as it should, because it was partially pinched at the lower end where it drains.  This problem seemed to at least partially resolve, though Victoria was still throwing up some.  They gave her a med to help her not to throw up and though we weren't quite back at baseline, we were to the point where we could observe progress and hopefully deal with little issues as she recovered at home.  (we had been there almost a week)  We had a good trip up north and were so glad to be home.  A few days after we arrived home, Victoria started having some pain issues.  I was so thankful for Gillette's triage nurses when we were trying to figure this out.  First, we stopped giving her the med to keep her from throwing wasn't working and was causing constipation.  We got that issue resolved, but the pain was still occuring about every other day.  We gave her warm baths, back rubs, used hot water bottles and lots of cuddles...nothing worked well consistently, though they all helped some of the time.  Next we tried a little simethicone (a basic colic med which relieves gas pain).  This also did not resolve our problem and it seemed like we might be dealing with more acid reflux...which was not resolved by positioning.  On Oct 25th, our doctor at Gillette faxed a prescription to our pharmacy (for acid reflux) and within about 12 hours she was showing definite signs of relief.  We were SO thankful!
The photo above was taken in early we were going through the corn maze.

During the next 3 weeks, she did  well.  She was recovering and comfortable.  She was gaining back weight which she had lost when she was sick.  I started looking forward to gaining back strength to the place she had been before she got sick...and then to move ahead.  Somehow after that first 3 weeks of relief, she changed.  She started to sleep more and when we would pick her up, she would let her arms dangle...that was new.  The thought flitted through my mind that she might be getting to the end of what she could do...but it was a passing thought and it flitted away as it had come.  She was still comfortable, digesting her food well, not dealing with constipation, she didn't have fever and she was still swallowing fine when we fed her the little we did each day...we had always tried to feed her at least a little orally, though she had a g-tube.  (We didn't want her to forget how to swallow)

Father's Day 2013
.  About a week later, she started to breathe a little differently...she left her mouth open to breathe... like you might do if you were stuffy...only she wasn't stuffy.  Again the thought crossed my mind that she might be getting to the end of what her body could do.  Breathing through her mouth like she was doing began to remind to me of my great grandmother toward the end of her life.

It was getting a bit harder to bring her out, because getting her in and out of her seat was a little more difficult when she was more limp.  I could see lifts and special beds in the future...but I knew that God would be there and give what was needed for each step.

early December

The last week, she still was digesting well, had no fever or pain, and was actually doing quite well with her oral feeding.  She got a full 2 ounces a couple of times that week...which was really doing well for her.  Still, she wasn't perking up like she should have been.  The thought crossed my mind that if we didn't see a change for the better fairly soon that we might need to connect with hospice again.  Still, it is hard to know...there isn't always a perfect pattern...though, of course there are little hints.  Friday night when I tried to feed her orally, she didn't want to swallow.  This confirmed what I had been thinking...that hospice was on the horizon, and my mental list for the coming Monday included getting an appointment with Victoria's doctor.

Victoria on her 3rd birthday with Grandpa and Grandma Krahn and Esther

Grandpa and Grandma Mitton (when Victoria was 2)
Early Saturday morning I gave Victoria her normal morning feedings and changed her.  She was more active than she had been all week when I was changing her...and I did feel thankful.  Bruce came in from a board meeting about 10:30 or so...about the time Rachel was getting Victoria her food.  She noticed her breathing as she was feeding her...and when she was done, picked her up from her stroller for a cuddle.  I ran upstairs for a few minutes and when I came down, Rachel told me she couldn't see Victoria breathing.  I came over and checked her wrist for a pulse...nothing...I checked her neck for a pulse...that is always obvious...nothing.  I unzipped her sweater and listened.  There was nothing to hear.  I looked up at Rachel and saw a reflection on her face of the tears streaming down mine.  Bruce came over and checked her as well.  Victoria had fallen asleep in Rachel's arms and had woken up to something beyond the best dream we could possibly imagine...Heaven.  It was so peaceful and quiet, we couldn't tell you the exact minute.  We were so thankful that we were at home...not far away at the hospital, thankful that Bruce was home, thankful Reuben wasn't still in Taiwan, thankful that Benjamin and Emily were close enough to come up that same day, thankful that she had not been experiencing pain or discomfort.  She had just slowly faded over the last few weeks until her journey through this life was complete.

Mother's Day and Father's Day 2013

I am thankful for Victoria.  I like to think that when she woke up in Heaven, she ran straight into Jesus arms for a 'twirl hug'.  She now actually has the right to say, "Life doesn't get better than this!"  She knows no pain--no sorrow--no fear.  She knows joy and peace in a place of complete perfection.  She has begun to experience which will not end...true life.  She is with Jesus, the One who gave His life for her, showing the ultimate love.  She knows perfect unconditional love.  Oh, yes...I also love to think of her running, twirling, jumping, hopping, swinging high in the air and down and chattering away in wonder at all she sees...and maybe asking one hundred questions.  : )

You need to know that our God is amazing.  He has walked with us each step of our journey.  In the dark days, He has given strength, He has given wisdom when we didn't know what to do, He has given comfort when our hearts have been sad.  He has given peace which goes beyond understanding.  He is so good!  He has been there with just what we have needed at just the right moment.  In our pain, He has carried us.  He has taken out His special bottle and collected our tears...they matter to Him.

"Surely he hath borne our griefs, and carried our sorrows:" Isa 53:4  Jesus walked this earth, and He feels with us in our pain.  He even experienced death for us.  "But we see Jesus, who was made a little lower than the angels for the suffering of death, crowned with glory and honour; that He, by the grace of God, should taste death for every man.  For it became him, for whom are all things and by whom are all thing, in bringing many sons unto glory, to make the captain of their salvation perfect through sufferings." Heb. 2:9-10.  He has suffered, and He feels our pain. He has also prepared a place for us where there will be no pain.  There, "God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away...behold, I make all things new."  For our little Victoria, death has now been swallowed up in Victory!  "Thanks be to God, which giveth us the victory through our Lord Jesus Christ.   So we give thanks for our little Victoria...for every day that we were given...all 1,395 days. We had so many more days than we thought we would many more days for love to grow,  her precious presence in our family is so missed...  How can you cry and have a peaceful and thankful heart all at the same time? 

 "Gracious is the LORD and righteous; yea our God is merciful.  O praise the LORD all ye nations: praise Him all ye people. For His merciful kindness is great toward us..."  (Ps 16:5 & 17:1&2a)
"O for a thousand tongues to sing, My great Redeemer's praise, The glories of my god and King, the triumphs of His grace.

My gracious Master and my God, assist me to proclaim,
to spread through all the earth abroad, the honors of Thy name.

Jesus, the name that charms our fears, that bids our sorrows cease; 'tis music in the sinner's ears, 'tis life, and health, and peace.

He breaks the power of cancelled sin, He sets the prisoner free;
His blood can make the foulest clean; His blood availed for me.

Hear Him, ye deaf; His praise, ye dumb, your loosened toungues
employ; ye blind behold your Saviour come, and Leap, ye lame, for joy." 

The grace of our Lord Jesus Christ be with you all...


  1. This post made me weep. I cried for your family, for your loss, for your sadness as you miss Victoria...and also for joy, because she is truly whole now and you will see her again. Thank you for reminding me what is important.

  2. Thank you so much for posting about little Victoria. I miss seeing her and hearing her little noises in church on Sundays. I agree, I think she's twirling around up in heaven!

  3. What an amazing post Linda!!!!! So very sweet and touching. I am so glad that Victoria is free of pain and suffering even tho I know many miss her here on this earth.

  4. What a beautiful post. I don't know you but I could feel the love you have in your family and I shed tears for your loss of your precious Victoria. I could also feel the peace you have knowing she is with Jesus. Blessings and continued peace to your family.

  5. Such a beautiful life story. Thank you for sharing.

  6. My heart just cried and cried for your family and you.. We loss our little girl Gennie with CF this pass April. We had her only a few weeks and now her brother Jake 5 also with CF is very ill. Her story is much like what our family is now going through with our son Jake. Each moment we cherish and treasure. I know in Heaven my little girl is now healthy and one day we will be able to hold her again. One of our Lord's greatest gifts is that he shared his love with us by giving us these children. And then when it is time he brings them to Heaven to wait for us. May today your day be filled in love and ay you rest to know your precious little one is in the arms of our Lord. God bless you during this time and may your heart find comfort.

  7. You will see her again. o sorry for your loss.