Happy Sunday!

A little cuddle with Daddy

Well, I thought that I would have more definite info to share with you today...but I will update you on what I do know.

I do know that Victoria had two clear tests...both Thursday and Friday.  I have not received the results from Saturday's test yet.  We are so thankful for these days without any bacteria in the CSF.

Victoria had a really good day yesterday...and last night she slept really well.  I even got an excellent rest last night which I am really thankful for.  We are hoping to start trying to bottle feed her in the next couple of days, now that she is over all feeling better. She has been getting her nutrition from the nj tube for the last little while, so it will be essential for her to transition back to getting her nutrition on her own.  After they took off her breathing tube earlier in the week, she was agitated, and they decided to give her  hi flow oxygen (with a little tube that blows into her nose).  As the week has gone on, and her agitation has gotten less and less, they realized she was really not needing the hi flow...so though she does still have have the little thing on her face it is no longer on high flow.  (update...Victoria has not been using the oxygen at all since mid morning...and her oxygen levels have remained good and stable)   (feeding update...victoria got 3mls of milk with a dropper this morning and tolerated it well...it's been awhile since she had anything in her stomach...and longer since she has had to work to eat...about 1/2 hour ago she got to try the bottle a little, but was a bit gaggy with it...so got a little more with the dropper.  she did do a little bit of sucking, though...so she has a start.)

Well...that is the latest, and as to day is Sunday, I imagine they won't be bringing me too many results today.
 I was so blessed this week with company!  First, my Aunt Pauline, and Uncle Dave came to visit...then Michelle, Jim and their Esther, then my dear husband. The day after Bruce left, my cousin Steve's wife, Jenny came and gave me a little crochet lesson, while we had a nice leisurely chat, then my Uncle Jim stopped in for a visit and yesterday, my cousin Mary stopped in for a while!  Thank-you all so much!  Thanks to those who sent cards, and comments, also. You have all been more of an encouragement than you realize, and I am truly thankful.   

"Bless the LORD, O my soul:  and all that is within me, bless His holy name!  Bless the LORD, O my soul, and forget not all His benefits...the mercy of the LORD is from everlasting to everlasting upon them that fear Him, and his righteousness unto children's children." Psalm 103:1,2,17

A father's Ramblings

I (Bruce) made the 6 hr trip here yesterday to see my two wonderful girls. I was able to hold both of them today, and it felt so ...well nice. Though Victoria's bacteria is so close to clearing up, she still is struggling with settling down and breathing right. I was thinking as I sat here in front of the screen...if only somehow I could take her place, take her struggles upon myself somehow so she could have rest...sweet delicous rest. Breaks a fathers heart to see one's flesh and blood suffer so.Was it not the Father's love that sent His Son into this world to take upon Himself our sins and sufferings, so that we might have rest in Him? I can only imagine how it must have broken His heart to see His Son suffer ...truly ours though real as it is pales in comparison. I was crying some the other day at home looking at pics of her when Reuben comes up behind me, puts his hands on me and comforts me...I am so blest . Sorry, this is getting , what shall I say, mushy, sappy..real? Just a father's ramblings.   On a more positive note...I am stealing Linda away tonight to stay at her aunt and uncle's place...she really does need the time away from here as it has been 2 weeks already.

That was written yesterday, by Bruce.  He has gone back home now...but what a treat it was to have him here!  It was also nice to have a full night's rest in a normal bed and a delicious and quiet little breakfast with Uncle Dave and Aunt Pauline.  Victoria has been restful most of today...heart rate and respirations have also told the tale of her rest. She actually slept a good part of the day.  This evening she is more restless again...but not as bad as Monday-Wednesday.  Each day they take a sample of Victoria's CSF and test it to see if it has bacteria in it. Tuesdays was clear...Hooray!  Wednesdays showed something...but today the slide came back clear again...we are hoping that will continue.   They have upped Victoria's milk she is getting through her nj tube to about 32 ounces now...so she is getting a good amount of calories...but if I kiss her and rub her little forhead she looks up at me and makes these 'I'm hungry' motions with her mouth. 

When a patient is in PICU, they figure that running around is the last thing the patient needs, so if for some reason, they need an Xray...the X ray comes to the patient.  Here is a portable x ray machine...they were taking an x ray to make sure Victoria's breathing tube was in the right spot.  These photos are from a few days ago...as she has not had the tube since Monday.  There is a screen that pulls up, where the xray can be seen right after they are done. 

This photo was of Victoria just before she got sick.  
Well...thanks so much for praying...there is no question that our God's peace and strength are here.  He is so good...even on the hard days. 

Victoria made it through the night with out the breathing tube.  She is still agitated, and breathing fairly quickly.  She does get some more restful moments, though, for which I am so thankful.

Hi All:
Linda wanted me to send a quick update on our little treasure. She has been breathing on her own since 10:30 today. Its been a struggle some of the time  and she sounds a little horse (something about a tube shoved down your mouth for 6 days ), but she is fighting.  I think they may sedate her a little, just so she can relax a little tonight.  Thanks to all who have called, sent us food, prayed for us, sent us financial assistance and just loved us....we are privileged to know you all . I am planning on heading down to see Linda tomorrow for a few days.  Someone commented that I guess your life is in limbo while you are at the hospital.  Not really...this is part of our life now. We embrace the road that God has us travel on, because that is where we find his presence and strength. His strength made perfect in our weakness. Blessings on each of you. Live for Him...He's coming soon. Bruce

Monday morning Update

I am thankful to report that Victoria's numbers have continued to go in the right direction.  Both the white blood count and the CRP continue to decrease.  Platelets have increased...which is good.  Her stomach seems better today...not so much gas.  Yesterday they had her breathe on her own for 2 hours.  They just adjusted her sub clavian main line (which is an IV which goes under her collar bone), and are intending to shut off her sedation now, in order to extubate (remove the ventilator) her this morning.  So if you want to pray for Victoria this morning, pray that she will not have problems with breathing completely on her own when they remove the ventilator.  Thanks so much. 

Friday Update

Dad and JoAnna with Victoria in the PICU

Victoria in the first couple of days at Gillette...notice her IV pole....it is a little different now.

Victoria and I in the recovery room...just before her 1st surgery

The IV pole now...notice any difference?



Victoria today...she was opening her eyes more today and was a little more responsive.

 Victoria has been getting a little of her colour back today.  They have started giving her mama's milk via her n.j tube.  Her digestive system seems to be getting back to work again...which is always a good thing after surgery.   She also has some numbers which we are thankful for:  specifically, her CRP and her white blood count.  Her white blood count had gotten up to 35.4 and has now dropped to 18.7.  The normal range for white blood count is 5.0-19.5, so she is within an acceptable range for that.  Her CRP had gotten as high as 36.9 and is now down to 14.2.  The acceptable range for CRP is 0-0.9, so she still has a little ways to go on that...still we are seeing progress, and are very thankful..  This morning they were still  not sure what bacteria had caused all of this challenge, but I heard unofficially that some kind of rare staph infection is the culprit.  I haven't seen the doctor since, and I don't know how much time is required to take care of this infection.  Hopefully we will know more tomorrow.  She is still a little gassy today, but with the digestive system kicking back in, hopefully that will take care of itself.   

Victoria and Elizabeth...on Victoria's 1st birthday.

Learning to Trust

Linda wanted me to post some pictures she took of Victoria with her sister's IPod. We (Bruce and the rest ) had a nice trip home yesterday. We certainly miss our girls , but know that they are in good hands.
Thanks for all your comments and prayers...even from those we do not know yet...so encouraging. If anyone wants to send mail to Linda or Victoria, they can at:
Gillette children's Speciality Healthcare
200 University Ave. E.
St. Paul, MN 55101
PICU. Victoria Mitton

 In all of this, we so want to share the love of God with those we meet. We were talking to one of the neurosurgeons about our family and especially about our Micah who lived for only 9 hours. Not often you see docs tear up, but she did...oh to be a light to a hurting world. Showed her a pic of our family, and she commented on the brightness and joy of the children. Now, you know our family, how imperfect we are, but people are watching...that they would see Christ in all of our lives. One of the docs wanted to know how the rest of the kids were handling it. Were able to share how we talk to the kids about life , and death. We love this life, but we do not fear death, as we believe in eternal life.  Most of the kids seem to have a real understanding and faith in Christ to trust Him in this...thank you Jesus.   Well, I'm praying that each of us would "trust in the Lord with all your heart and lean not on your own understanding, in all your ways (where ever those roads may lead) acknowledge Him, and he shall direct thy paths." Blessings, Bruce

Did you notice the little tube in the top of Victoria's turban? That is draining her CSF for the time being.
Also, there has been a huge drop in Victoria's CRP count.  This is a good indication that the infection is finally being dealt with effectively.   She has had a gassy tummy today some of the time...but this is to be expected after two surgeries.  (Thanks, Daniel for the technical tips!  : ) )

Wires, wires, tubes and wires...what are all of those things for??  The thin wires that you see are to monitor Victoria's heartbeat and respirations.  .  The big clear tube with the blue and green connectors on it is the ventilator.
Just below the ventilator, you can see clear tubing from one of her I.V.s. Up on her shoulder, you can see the two ports which are connected to her 'central line'...they are just laying on top of her left shoulder, as they are not being used at the moment.  The drainage tube for CSF is sticking out of the top of the white gauze on her head.  That is what you can see in the photo.  Along with what you can see, she also has a blood pressure cuff on her right calf, she had another IV in her right arm (but they took it out today, because it had stopped working), an ng tube, and an nj tube, an oximeter (to measure oxygen level) on her big toe, and LOTS of tape to keep it all in place.

Surgery complete

Victoria was brought down for surgery
Sometime a little before 4:00pm.
Her actual surgery began at 4:30
And was complete at 4:49pm...the rest of
The time was prepping, which included
About 20 minutes washing. She came through
Surgery well and is now resting.

I thought that I would have had a photo for you, but
I was not sure how to get them to the blog on Louise's
Ipod (any tips Daniel??)...I thought you would all
want to know what is up tonight...the photo can
wait for now.  Hopefully
we'll have a photo or two before too long.

I was so thankful to have Doug, Louise, Daniel, Jonathan and Joshua here
during Victoria's surgery...the timing was so perfect!  The hour and
half went by really fast with them for company.

Shunt infection confirmed

When they discovered that the shunt was not working, they were able to get 1 drop of spinal fluid out of the reservoir in the shunt, which they sent to the lab.  Yesterday it had not grown any bacteria.  When they did surgery yesterday, they sent some more spinal fluid to the lab.  Earlier this morning, they said that there was some indication that there could be some infection in the fluid...so they reserved the OR for this afternoon...just in case this was confirmed.  A few minutes ago the Neurosurgeon NP, came and told me that the fluid  from the first sample had indeed grown bacteria, confirming a shunt infection.   What does this mean?  Surgery this afternoon in which her shunt will be externalized.  It will need to be this way until the infection is gone.  When the infection is gone, they will replace the shunt.  So it sounds like she will be going back to surgery somewhere between 3:00 and 4:00pm .  I will try to get another update out later tonight.  Thanks in advance for your prayers!


What does it mean to externalize a shunt?  First, a shunt is made up of three parts:  the catheter which goes into the area which needs draining, the valve, which regulates how fast it drains, and the tube which drains the fluid into the stomach cavity.  Yesterday, he replaced the catheter, which was blocked, and I think maybe the valve also.  However, he left the tube, since it was working, and they did not think that it was infected.  Today, they will take out all parts.  The catheter will get access through the skin, and the valve and tube will  be outside her body and will drain into a bag on an IV pole.  When the infection is gone, new equipment will be put in. 

Surgery is over

Well, thanks to God, and the prayers of y'all. Surgery went well. Victoria is back in her room and sleeping as peacefully as you can with tubes down your throat , and nose and 3 IV's in. They found that the shunt was clogged and were able to replace it. They now have to test and see if it was infected with bacteria or if the fluid in her head is infected, which will be a few days. One hurdle past, and now on to the next.  If you could pray : that they could find out why her white cell count is so out of wack (laymens termanology for where the infection is) and that she could get off of the breathing machine and breath on her own and that she could eat again on her own. Pray too for Linda, that she could get the rest she needs, as she will be staying at the hospital with Victoria.  We are thankful for a God that goes down the road before us and with us. Our lives are certainly not what we would have scripted for ourselves, but our great God never makes a mistake. He formed Victoria in the womb as He saw fit, and we just want to take care of our treasures that were given to us.  Is it easy...not, but is God good? yup. Well, its been a roller coaster of a day...my tank is almost on empty and so is Linda's, so I am off to put her to bed and then head there myself. Resting in the arms of Jesus, cause we have no other recourse...blessings, Bruce

Surgery Planned

Well, today Victoria's sodium made it up to normal...but she showed higher white blood count, so they started to look for another solution.  In order to rule out shunt infection, they tapped her shunt, and found that it is not working properly.  So, she is scheduled to have a shunt revision tomorrow at 5:00pm.  We would appreciate your prayers for her.  If they find infection in the spinal fluid, it will mean external draining until the infection clears and then putting in a new shunt...but we will not know that until tomorrow.    If it just has one part of it which is not working, they will replace the clogged or malfunctioning part, and it will then continue draining as usual.

Victoria had kind of a hard night last night.  She had remained stable, and was improving slowly, as they were slowly increasing her sodium...so they decided to speed it up a bit yesterday.  Around 5 in the evening, they moved us upstairs to the regular children's hospital area.  When Bruce came in to visit in the early evening, he noticed that her stomach was more distended than it had been...and her heart rate and resperations were going up...she was showing signs of discomfort.  Then we looked at her feet...they had been swollen...but this was worse than the ankles of a lady who is nine and a half months pregnant.   We called in the nurse, who in turn called in the 'on call' doctor...they decided that she was not able to handle the quicker flow of the fluids, and so turned them down.  She didn't really settle down until after midnight...I was able to hold her...wires and all and help get her settled down and more comfortable.  When her breathing slowed down and she started to doze...it was SO peaceful!  I was so VERY thankful.  I had them tuck pillows around my back where support was needed, (I wasn't going to mess up the spot that was giving her perfect comfort)...and cuddled her until about 2:30....when they had to do something which required her to be back in her crib.  When they were done, she remained at rest...so I pulled out my lovely "pull out" bed/chair...and got a very peaceful rest for most of the rest of the night.  Victoria slept peacefully most of the rest of the night, as well.

The doctor was in this morning, and said that she is definitely having trouble processing sodium properly.  He is hoping when we get it a little more normal, that her body will be able to go back to processing it as it should, but of course we don't know.  In order to help her today, he is turning down her IV to 2/3 hydration, and not allowing bottle feeding...I had already fed her once this morning, but that will be it until tomorrow.
He is hoping that this will help her to deal with some of the retained water, which is diluting the sodium concentrations in her body.  He does not feel that she has any respiratory infections which are bothering her right now...and his main concern is this sodium problem.  Her fontanelle is still harder than it had leveled off at, but though I do not notice a decrease in size right now, at the same time, I do not notice an increase in pressure, either.  This also is not one of their concerns at the moment.

Well...there is Victoria's update...may you all have a truly blessed and restful Sunday. 

"O give thanks unto the LORD; for he is good: for his mercy endureth for ever. O give thanks unto the God of gods: for his mercy endureth for ever. O give thanks to the Lord of lords: for his mercy endureth forever."
Ps 136:1-3

Friday Update

Last night Victoria drank an ounce from a bottle...the first since she was admitted.  Today she has taken a little more.  Once she spit most of it up, but the last time when Bruce fed her, she did well, and kept it all down.  Victoria's sodium was low, so they have been trying to slowly get it back where it needs to be.  She has not been having fever and her breathing has been getting more normal, as well.
I was able to hold her for awhile this afternoon.  The nurse unhooked the IV and all of her monitors except the oximeter and we had a good cuddle...it was so nice to actually have her in my arms, instead of kissing her over the side of her crib!  So she seems to be improving...there is still a need for more improvement, but we are thankful to see progress!

 Thank-you so much for your prayers...we are very aware of the need for strength and wisdom far beyond our own!  Thanks too for the comments...they make you seem closer, somehow!

Happy Birthday Victoria Faith!!

February 10, 2011...Victoria's first birthday!  Hooray!  We praise God for her precious life.

 All the tests said she would not, she could not live.  But God......had other plans for her.  We are so grateful for each day we have been given with her.  She has blessed us, she has blessed others and she has also taught us many things.  I thank God for the lessons in trust and faith he has taught me through this year...also for the peace and comfort He has given during times when we didn't know what was coming next.

Right now Victoria is in the PICU here at Gillette.  The main reason, I was told that she is in PICU, though she is not considered critical, is for having an isolation room...something that was not available up in the regular children's hospital rooms up on the 7th floor.  She had a busy day yesterday.  They took blood for testing, did a chest x-ray, as well as a shunt series (also x-ray), they did a CT scan, and also an EKG.  The shunt series and scan were to monitor the shunt and see if it was working properly.
The blood work showed an unusually high white blood count, and platelet count.  The high white blood count indicates that she is still fighting an infection after 2 weeks of oral antibiotics and 2 injections of antibiotics they gave her in Roseau on Tuesday...so that is a concern.  At the moment, she is on an IV, getting fluids and antibiotics.  She also has an ng tube which was to relieve her stomach, as it had a lot of air in it.  From the scans they think that the shunt is working, but may have been slowed down by the pressure in her stomach...some of which may have been caused by the oral antibiotic she was on.
They did adjust the shunt yesterday to 1.5.  (It was on the high side of 2.0...but the last time it had been adjusted, it was at 1.75...so it had changed a bit.)  At 1.5, the shunt will flow more quickly, so they will be keeping an eye on that.     So there is a lot of info...but not necessarily a definite answer to exactly what is up with Victoria right now.   She is stable and resting comfortably at the moment.  Her soft spot is not quite as tight as it was yesterday.  Right now, I guess we have to be patient, as we watch how she responds to what they are doing presently...and then assess if there are other things which will need to be done.  So we appreciate your prayers for Victoria, and for us that we will have wisdom, peace and grateful hearts.  We serve a God who knows, loves, cares...and holds the future.  He has a perfect plan...and we rest in Him.

New Challenges for Victoria

It looks as though we may now be fighting a shunt infection.  This is an issue for Gillette, so Victoria has an appointment there at 2:00 pm on the 9th...that's tomorrow.  We sure do appreciate your prayers...and will try to update when we know more. 


"Because thou hast been my help, therefore in the shadow of thy wings will I rejoice"  Ps 63:7

Victoria -- Update

How is Victoria doing?  We are glad to report that she is improving.  She has been eating well since Sunday, and has been regaining weight that she lost last week.  We are so thankful to see her eating well.  She is having somewhat of a hard time with the antibiotics she is taking.  She has been very restless, and also has gotten a rash which is making her uncomfortable.  Apparently it is very common to have an upset stomach, diarrhea and restlessness with the antibiotic she is taking.  We are giving her yogurt each time we feed her, to help with her discomfort, and are counting down the days she still needs to be taking them.  She is on day 9 -- 5 days left.  We appreciate each one of you and thank you for your continued prayers for little Victoria!