Happy Birthday Benjamin

This post is a little late, but, better late than never.  We love you a ton, and are glad to be called your parents.

Blessings on your year. Trust in the Lord with all your heart . Your grateful parents.

Mommy is Home

 Saying goodbye to the wonderful staff at Gillete. And saying hello to....home

 

I'm sure you think that we have disappeared off of the face of the planet. Not really...we are just enjoying have Linda and Victoria home again. Reuben was to fly down on Friday to help Linda drive home, but he got bumped off of standby, so Linda made the trip by herself. All went well, and she arrived home Friday evening.  To say the least, it was so nice to have them home. Now, I have to admit, I was not here when they got home. I was invited to play in a forty and over hockey tournament with my bro in law, (yes Linda thought it was a good idea for me to go) and didn't get back till Sat. night.

These are just a few pictures since being home

Victoria and Marie. Notice the black bag and tubing. That's the pump that attaches to her g-tube. Right now we are using it to feed her momma's milk, as she still can't seem to remember how to eat. She wants to, but cannot seem to figure it out. Prayer and patience I guess. We are using braces for her hands to help them out, and are doing therapy on her legs, as they are pretty stiff. Overall, she is doing so well. At first, she was going through what seemed like withdrawal symptoms from being on so much medication, but that seems to be abating , for which we are really grateful. She seems so much more content now that we are home, and so are we. 

 She still fits in her swing, but not for much longer. 

For the first time in 5 weeks we were all able to go to church together. We have such a great church family, so kind thoughtful, generous, supportive. Could not imagine going through this without them. Right now, Linda is at the doctors...nothing wrong, just a check to see that the white cells are up and that the bacteria is not coming back. Thank you all so much for all the kind comments , and especially your prayers on our behalf...we are humbled.  My memory work for this week is, be careful for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known unto God. And the peace of God which passeth all understanding shall keep your hearts and mind in Christ Jesus. This has been a constant truth for us these days. May it be so in your life as well. The two little words, nothing and everything are so easy to forget.  Blessings on your day today. Bruce, for all of us grateful, joyful, content, Mittons.

The Time Has Come : )

It has been very busy here at the hospital today...in fact most days have been fairly busy.  Today, they have been giving me last minute training and information, as we are supposed to be discharged tomorrow.

The iv antibiotics have been stopped, in fact Victoria is IV free right now.  Her white blood count has come down, she hasn't spiked a high fever recently, she is doing well with her feeding through the g tube.  We hope to get back to oral feeding...but time will tell how that will go.  She still has some discomfort, but is getting easier to comfort, when she is not feeling the best.

So, the plan is for us to head home tomorrow...are we excited...just a little : )...
I know this is short, but I will try to get more details down later...just thought you might like to know the plan for heading home.  Thanks for all your prayers...and don't feel like you need to stop now...we stand in need every day, and Victoria will definitely have further healing needed. ..Still we are so grateful to be just about home!  We thank God for all He has done so far, and are so grateful that He holds the future, as well.

"God has a reason for everything He does.  You may not understand why he leads you now in this way and now in that, but you may, nay you must believe that perfection is stamped on His every act."  E. Prentiss

Wishing for better days

Linda wanted me to post a little something. Seems like Victoria has a fever again, with high white blood cell count and high platelets..looks another infection of some sort. It seems like a replay of a month ago, but we are praying that its not. We are obviously disappointed... to say the least, as they were to come home today, but God had other plans. Pain, sorrow, tears, frustration, fear, impatience...all words that have been reality lately, but after wrestling in the quiet place with God....peace, assurance, quietness, trust are just as much a reality. Our  precious saviour is in the boat in the storm with us...it does seems like He sleeps, but He cares eversomuch, and He speaks peace to us in the storms of life. His delay is for His glory.  Thought I would put in some pics of "better days"

Our theme this month with our schooling is about praying in secret...um, coincidence? Lord, teach us to pray. Blessings on each of you. Bruce

Look, Mom! No Turban!

Victoria having a little snooze the evening after her surgery.

Victoria's shunt replacement surgery yesterday was moved earlier by 1 hour, so by 9:45, the nurse upstairs was washing her hair.  She was brought into the OR about 11:00 am, and by 11:30 they had begun the surgery.  Victoria actually had two doctors for this surgery, because they knew she had some adhesions...likely from the infected CSF...and did not know if they would cause some trouble with finding a good place for the drain.  So the neurosurgeon did the shunt placement, and another ped doctor, who works a lot in the abdominal area did the stuff in the abdominal area.  My beeper went off at about 11:55, and I thought it was a little early...maybe they were going to tell me that it was going to take longer than planned.
Thankfully, the opposite was true.  They had not run into any big issues with adhesions, and the surgery was done.  About an hour later, they brought her back up to the 7th floor.  They had extubated her down in recovery...she had used high flow O2 for a few minutes...then did fine on her own.  She came back up breathing completely on her own.  Her digestive system began functioning again by evening, and they started to give her milk again through her g tube.  They are also giving her some nutrition through an IV, but that is decreasing, as the stomach feeds are increasing.  Victoria had been doing really well since the surgery, and we are looking forward to thinking about home before too long.

What is left to go?  Upping feedings, and making sure that her stomach is able to handle them, watching the shunt to make sure the setting is acceptable for Victoria's flow rate, starting a little PT to help get back her muscle tone which was lost during the last 6 weeks. I've also been learning to use the g-tube.  I was able to give her a little milk today orally with a syringe...and she did enjoy it.  Every day we are getting closer to home, and I am SO thankful!!!


For those of you who have been praying for Noah...his mom came up yesterday for a little encouragement.  He was being extubated after 11 days on the vent, and she was a little worried about it.  He had a hard time with it at first, but when I talked with her today, he was starting to do better with it.  He still has a little ways to go, but this was an important step for him.

A Little Surprise and Shunt replacement surgery

If you wondering why it has been a few days since I have updated this page...it is because I was occupied with other important things...or should I say, people.  Monday morning, after a nice long cuddle with Victoria, I drove 10 miles to the other side of the Minneapolis airport, to a small terminal called Signature Flight Services. 

I boarded this plane...which carries 19 passengers...at 7:30am, and walked in the door at our home at 9:00am!  I could not believe how quickly the flight went!  We traveled about 260 knots or around 300 mph, at an altitude of about 16,000 feet, today, though I think we travelled a bit faster on Monday.  (Matthew, that means that 1 knot is about 1.15 miles)

Just about to land at the Minneapolis airport.

The height in the airplane was probably 4 1/2 feet or so, I'm not sure exactly, but you did have to bend over a little to walk down the aisle to your seat.  As you can see, every seat is a window seat...except the front two.  This plane is used primarily for bringing in customers to see the plant and visitor center and get a feel for the company up in Warroad, and for transporting Marvin Employees when they need to travel for work.

It is, however, available for a reasonable fee, (if there is room)to others who have some connection with the company, and want to go all the way up north to Warroad. 

After nearly 4 weeks in the hospital, it was so refreshing, to be home.  We caught up on lots of hugs and cuddles, had a belated Valentine's meal, enjoyed playing some games, reading, doing schoolwork, cooking together, and a little skating...just the fun things we do together which make up everyday life.  It was a surprise for the children younger than Reuben...and a surprise that we all enjoyed! 

A meal at home...with family  (our belated Valentine's dinner)!  How enjoyable!!  Benjamin even ran down from Thief River Falls for Monday evening and was able to make it in time for supper.  It was just so refreshing to be home with family!  I did enjoy a couple of nights in a real bed, as well, and we even managed to get to a little deacon & wives supper over at my parent's place...though we didn't stay too long...it was very nice, as well.  This morning we all got up a little early, so we had time to get in a good amount of school work, and Bible reading together, and then play a little game, before my dad came and picked me up to head to the Warroad International Airport, for my return flight. (Bruce had to work, so we had to say our good byes early this morning, after 2 days of just enjoying being together.)  My flight left at 12:00 PM, we arrived in Minneapolis about 1:20 (we had a little head wind slow us down a bit, and we had to circle around and come in from the south), and after parking near the top of the parking ramp  at the hospital (because the rest was full), I arrived back up with Victoria about 2:00 pm.  While I was gone, they had volunteers come in and cuddle with her, and there was one holding her when I came in.  Now she is resting, but I do look forward to a good cuddle this evening.

Victoria's fluid has remained bacteria free and they feel that she has been recovering well from her last surgery, so they have scheduled her Shunt replacement for 12:00 pm tomorrow, March 10th.  We would appreciate your prayers for her, as she faces this surgery.   Thank-you all for all you mean to us!  We are blessed to have so many friends and so much family upholding us during this time! 

Quick Update

Just thought that you would like to know that Victoria was extubated early yesterday afternoon, and she did really well.  They did give her high flow oxygen overnight...gradually decreasing the amount of O2 in the air flow, and this morning they removed that, and her oxygen level is staying stable...99 to 100 mostly
They have just moved us out of the PICU, and we are now up on the 7th floor in a smaller room with a really nice view...as city views go...we can see both the capitol and a big cathedral from our window.
We are now in room number 7324 and our new phone number is 651-312-3161.  If you end up calling the old one, they may be able to transfer you...and I think that with our name on mail it will find its way up here, as well.  Victoria has been here long enough, she is getting well known.

Up on the seventh floor, they were not comfortable with Victoria's external drain being unwrapped...so the she has been re wrapped...looks like a little helmet.  The things you see on her face are all relics...of various tape jobs, and glue which helps the tape to stick...and the special sticky things that held the high flow O2 in place. 

We appreciate you all so much...thanks for your continued prayers on our behalf! 

"Light is sown for the righteous, and gladness for the upright in heart.  Rejoice in the LORD, ye righteous; and give thanks at the remembrance of his holiness."  Ps. 97:11,12

Hospital life for mom

Where am I staying, and what do I do during the days at the hospital? Bruce thought you all might enjoy a little glimpse of where I am at the moment...

Victoria and I are at Gillette Children's Speciality Healthcare in St. Paul  it is located about two blocks from the Minnesota Capitol Building:  Gillette's mission...which I found prominently displayed on a large plaque in the skyway is:
Gillette Children's Specialty Healthcare provides specialized health care for people who have short-term or long-term disabilities that began during childhood. We help children, adults and their families improve their health, achieve greater well-being, and enjoy life.  Gillette has been in existence since 1897.


If you come park in west parking, level D, you will be able to walk right into the Gillette children's clinic area.
There is an info desk with helpful staff ready to answer questions, and stamp your parking ticket, which gives a reduced parking rate.

I sleep in the same room with Victoria.  The PICU down here was just redone last year and the rooms are private and fairly roomy.

The top picture is my bed, which is a couch by day.  It is reasonably comfortable, now that I have gotten used to it.  It is about 2 1/2 feet wide when it is pulled out.  It pulls out about 6 inches further than what it is as a regular couch.  The second photo of the rocking chair is located beside the couch, and is where I do my pumping, or can sit and relax.  I also use the rocker to hold Victoria.  If you look past Victoria's bed in the bottom photo, the rocker is behind the curtain to the left, and you can just see the left side of the couch.
The curtain you see, is about 5 feet from the wall, and pulls across the entire room to give a little privacy.

 

This little nurses station is located directly outside Victoria's room.  The window behind Jenny looks right into the room, and she can see Victoria and all her vitals from right where she is often busy charting.  The nurses here have really been exceptional.  I have been so thankful for each one!

These photos are of the Family room which is just for PICU.  (a special PICU card is required to get in).
There is a fridge we can use, microwave, a coffee/hot chocolate/cappuccino machine  as well as a computer, couches, some toys and games for children.  I had been bringing my meals here...for about the first two weeks I was here...but I have started bringing them to the skyway...as there is sky there.



 

I have also gotten well acquainted with the washer here, as they are using cloth for Victoria at the moment...any thing to try to deal with the rash she is fighting...probably somewhat reacting to antibiotics.

They are doing some construction work at Gillette.  This is the hallway leading to PICU...it just got two feet smaller overnight.

Exercise is essential...so I have found places to walk here at the hospital to walk.  If I go down the above hallways...and two more, I can a walk a mile in 10 times around.  If I walk the skyway, it takes about 10 times back and forth.  I try to get a minimum of a mile in everyday.  Most days, I get two.  Sometimes I walk outside, and sometimes in the other part of the hospital for a little variety.

Here is the skyway where I have been having most of my meals lately...and the view from the skyway...you can see the capitol in the background.  On sunny days, it is especially nice to be out here.  There are tables in one end of the skyway where I often take my meals.  There are also chairs where I can sit and read a bit.

One of the things I like to do best, Is to cuddle Victoria when I can.

Victoria just before they took her down to surgery this afternoon.  Surgery began a little before 4:00, and I just got a call saying that the first surgery...the longer one is done...and went well.  the shorter one about to begin.  Update:   Second surgery is done...Victoria will be intubated at least overnight, because they were not able to do the surgery with the little camera., as a guide,.so it required an incision...so the RT team is here waiting for her to come back up. Update:   Well she is back...sedated and on a tube, but she came through the surgery well, and we are thankful!  Please keep praying...the length of her illness has been hard on her.
We praise God for His goodness in giving this little treasure to us.

Surgery Planned for Today Mar. 4

On Wednesday, the CSF which was tested was positive...not for the staph, but for some other unrecognized bacteria.  This, of course puts back the replacing of the shunt...until this is dealt with.  They are also going to be doing some testing, I believe, to make sure that the sample was not somehow contaminated.  There is a possibility that this is related to the external drain which has been in now over two weeks.  This afternoon at 3:30, they are going to replace the drain, and while she is under for that, they are also going to put in a G-tube.  She has sucked a little, and has done ok taking milk from a dropper...but is a long way from being able to get the nutrition that she needs on her own.  The G tube will allow her to get all of the nutrition that she needs...she will still be able to eat on her own as she relearns how and is able.

We would appreciate your prayers for Victoria as she goes into surgery this afternoon. 

Psalm 145:9  "The LORD is good to all:  and His tender mercies are over all His works."

"If we are marvelously wrought upon even before we are born, what shall we say of the Lord's dealings with us after we leave His secret workshop and He directs our pathways through the pilgrimage of life?" 
                                                                                                                                             C.Spurgeon


It is definitely time for an update.  Victoria has now had quite a few clear days...where no bacteria showed up in the CSF.  This means that she is close to being able to have the shunt put back in.  However, right now, our main concern for her is her feeding.  She is being fed via a nj tube at the moment...but she will of course need to eat on her own.  If she is not able to get enough nutrition on her own, we are considering having a G tube put in.  Right now she is in the testing stage...we are trying to feed her, and see if she will be able to remember what she needs to know on her own.  We have begun feeding her orally with a little dropper.  She sucks that milk down well, so she can still swallow reasonably well.  She has not done well with a nipple before today.  This afternoon, they tried a special nipple, and she did suck on that one for a little bit...with a little help reminding her cheek muscles what they need to do, and a little pressure on the chin.
It seems like her muscles have forgotten how to suck properly. After having nearly a 3 week break that is really not too amazing, and of course, she has been very sick, as well.  I was really excited to see her actually do some sucking, though.  It was a lot of work for her, and her heart rate was pretty fast while she was doing it...but hopefully she will get at least some better as she gets stronger. 

The reason watching her feeding, and trying to help her re-learn is stalling things a bit, is because if it seems a G-tube will be essential to help her get good nutrition, the neuro surgeon would like that surgery to be done before the shunt is put back in.  The reason for this is that a shunt infection is more likely to occur if there is a surgery in an area close to where parts of the shunt are located...so it is to help eliminate factors which could cause a shunt infection to reoccur. 

She has had a somewhat agitated afternoon...she did calm down for a little while when I patted her back and put my other hand on her tummy...but mom's 'magic touch' only lasted about a 1/2 hour, then she was uncomfortable again.  We even cuddled for a little over an hour...and she still was not at rest.   She is at rest now though, and looks peaceful and comfortable.  Thanks for praying!!  We are so grateful! 

Maybe you could add one more to your prayer list.  There is a boy here named Noah with a bad case of pneumonia.  I met his mom in the family room...and I know she also would appreciate your prayers for Noah.  Thanks!

In acceptance lieth peace,
O my heart be still
Let thy restless worries cease,
And accept His will
Though this test be not thy choice
It is His  -- therefore, rejoice.
                    H. Hurnand