Wiersma Family Blog

WIERSMA FAMILY BLOG
A glimpse into our lives as a family with micro-preemies. Our twins boys (Lovingly referred to as our Miracle Men) were born almost 16 weeks early.

Our journey continues when our son Max was diagnosed with cancer at the age of 3. This is his story....


Wednesday, April 29, 2009

Untitled

Jesus took Kate's mom home to Heaven this morning.  She was very peaceful and comfortable, and Kate's dad, sister Lisa and her husband Joe were there with her.  We thank God for the promise of eternal life, that we can take hope knowing that we will see Mom again.  And when we do, her body will be the perfect body that God had designed for her before there was a drop in the oceans.

The visitation will be held at Notier VerLee Langeland on 16th St. and Fairbanks in Holland on Friday, May 1, from 1:00-3:00 P.M. and 6:00-9:00 P.M.  The memorial service will be held at Harderwyk Church on Saturday, May 2, at 6:00 P.M.

Tuesday, April 28, 2009

Waiting

It feels like it has been a long time since I got a post on here...but it was only two days!!  The boys are doing pretty well.  Max has been up and down on his vent settings as the doctors keep trying to find his "happy place" as I like to call it.  He was down to 46 on his pressure and 240 breaths per minute, but he is now back to 50 on his pressure and 360 breaths per minute.  After a few hours that setting will show that he is doing very well, so they will turn some things down, then they will turn things back up...it is crazy.  He continues to get 9 ml of breast milk every three hours, and is tolerating that very well.  The doctors are very close to starting him on a steroid regiment, but are very cautious in doing so.  They have told us about 100 times that high-dose, long term use (6+ weeks in a row was common) steroid treatments were the norm in neonatalogy in the 80s-90s.  The patients would typically respond very well, but studies later determined that the kids that were treated with steroids in this way had a very high likelihood of cerebral palsy.  Needless to say, the doctors really want our "okay" before they try any steroids.  They will limit the treatment to 6-days, and give a high-dose only in the first few days and then lower the dose each day until the end of the course.  Max was on a small dose of steroids following his PDA ligation, and responded very well, so we are trusting that the doctors will make the right decision and if they feel that Max will benefit from it again, then we will pray that God has the same plan.  Wes has made some good progress in the right direction.  They took him off the jet vent yesterday, so he just has the conventional vent now, and he has responded very well.  Tonight they reduced his breaths per minute from 50 to 30 in an effort to ween him off the ventilator all together.  Please pray with us that his lungs and his determination are ready for just Wes to decide when to breathe...we would just really love to see him get off the vents altogether.  We have never really seen our son's faces without tape covering their nose and mouth, so that would be really cool for us if Wes is ready to have just the CPAP machine helping keep his lungs open.  Wes is getting 15 ml of breast milk every 3 hours, and continues to do well with that.  We praise God that for the time being, the respiratory problems are the only real issues we are dealing with.  It is very common for kids this young to have issues with their brains and digestive systems, and barring some earlier concerns about Max's brain, we have not had to deal with any of those problems.  We pray that God will continue to grow and develop their bodies in His timing, and give Him the praise for the progress made thus far.  Also...Wes hit the big milestone today of weighing 1,000 grams!!  That is one whole kilogram folks...quadruple digits!!  That equates to 2 lbs 3 ozs.  Max is just a little behind him at 940 grams or 2 lbs 1 oz.

Yesterday was a tough day as Kate's family made the decision to move Mom to the Hospice facility in Holland.  While it was a very painful experience to see her taken from the home knowing she would not be back, it has turned out to be a good decision.  Mom has been much more comfortable since the move, and the burden of making sure she is getting the right medications is taken off the family, primarily Kate's dad.  The people at the facility are amazing.  It takes a special person to work in a Hospice type facility...and to do it as well as the nurses and other staff do is such a blessing to our family.  The days have still been long, but at least Mom is comfortable.  I think the overall sentiment is that we would just really like Jesus to call her home.  We wish that God's timing were the same as ours, but it is not.  We thought she was going to Heaven this afternoon, but as of now she is still with us.  Please pray for continued peace and rest for Mom and the rest of the family.  I covet your prayers for my wife as well.  She is trying to juggle time with our little boys in the NICU and spending time with her family in the last moments of her Mom's life.  On top of all of that, she has to find time to pump 8-times a day.  She is just a superstar.  Also, I have been working through this whole process, and I could really use an extra measure of patience and focus.  

Sunday, April 26, 2009

Long day

Well, the boys are doing fine.  The doctors changed Max's vent settings again by increasing his pressure by 2 to 46, but further reducing his BPM to 240, and he is tolerating that change very well.  His oxygen needs are still in the 75-85% range, but we are praying hard that his lungs will continue to develop, and his oxygen needs will come down.  They have also upped Max's feedings to 9 ml of breast milk every 3 hours, and have reduced the amount of TPN and other IV fluids they are giving him.  Wes' vent settings are unchanged and his oxygen needs have been between 40-55%, depending on how he feels.  When he starts squirming around, he tends to desaturate, and when he is calm and sleeping, his oxygen needs come down.  I had a nice calming talk with him this afternoon and sang his favorite song, and next thing you know the kid is sleeping and needs his oxygen turned down.  If only I could be there all the time!!  Isn't that so similar to our Heavenly Father?  When we are squirming around with the trials of this life, the sound of His voice is enough to calm any storm.  The biggest difference is that He IS there all the time.  Wes is also doing very well on his feedings and is up to 15 ml every 3 hours...and pooping OFTEN.  I let the nurses change those diapers...they get paid the big bucks.  I know my time will come, but I see no need to rush it.

It has been a long weekend.  Kate's mom is not doing well and we are just all emotionally drained and physically tired.  We had a very special time with her this morning, however.  We were all gathered around her bed and had an impromptu church service that was just amazing.  We read some Bible verses and sang some songs...but the highlight was when Kate's mom started to sing the harmony on Blessed Assurance.  I will never forget that moment.

Please continue to pray for Kate's family.  Pray that God will grant a peace that only comes from Him, a peace that passes all understanding.

Blessed Assurance, Jesus is mine!
Oh what a foretaste of glory divine!
Heir of SALVATION, purchase of God,
Born of His spirit, washed in His blood

This is my story, this is my song,
Praising my savior all the day long;
This is my story, this is my song,
Praising my savior all the day long

Friday, April 24, 2009

Four weeks old!

Hard to believe, but the boys are a month old already!!  Wes has been doing very well recovering from his PDA ligation surgery yesterday morning.  His vent pressure has come down from 32 to 24, which is a huge improvement in such a short time, and even more impressive considering he is recovering from heart surgery.  His oxygen needs have gone up a bit, but that is to be expected with less air coming in.  Max is still on pretty high settings with his vent and oxygen, but has been quite stable, meaning he has not had wild swings in his oxygen saturation which he and his brother are so famous for in the nursery.  The doctors have also changed their approach with Max and have taken him off the conventional vent altogether (they typically use the jet vent in tandem with the conventional vent) and have increased the pressure on his jet vent from 40 to 44, but reduced the breaths per minute (BPM) from 360 to 300.  The theory is that the reduction in the BPM will allow him to naturally expel more CO2 by giving him more time to exhale.  This theory will be monitored closely as it is not the most traditional way to deal with a baby this small that has very sick lungs.  Both boys have also started nebulizer treatments of Albuterol to help their lungs relax and open up.  The doctors would also like to start Max on some sort of steroid treatment, but want his blood pressure to be a little lower before they start.

All in all, the last couple of days have been good ones.  Wes' surgery went well, he is recovering quickly and Max seems to be much more "stable" than in days and weeks past.  On top of that, we have been able to spend some very quality time with Kate's mom, too.  Oh...and the boys both weigh 2 lbs now!!  We thank God for His providence, for walking with us through the valleys and setting our feet on firm ground once again.  If only for a day, the break from the grind is welcome.  We also thank God for all of the people that have been holding up Max and Wes in prayer, along with Kate and her family.  We are daily blown away by the way God has used His people through out this journey.  The prayer support first and foremost has been nothing less than incredible.  As if that alone was not enough, God has provided people who have generously given beautiful gifts for the boys, quilts and prayer shawls that are draped over the boys incubators as we speak, gift cards, gas cars and anonymous monetary gifts.  Each and everyone of these gifts has come with such impeccable timing as our needs have arisen that it can only be of God.  Thank-you to everyone who has allowed God to use them...who have been blessed to be a blessing to Kate, Max, Wes and myself.  

Thursday, April 23, 2009

Heart surgery #2

Wes' surgery went very well this morning. The surgeon said he had to use and even bigger staple on Wes than he did on Max...and he said that Max's was huge!! That could be because of the 9-day span between their surgeries...but they are not growing that fast!! Wes is still medicinally paralyzed and sleeping like a...baby. He is actually on room air (21% oxygen) right now, but the nurse said that is because he is not fighting against the ventilator. We will take less oxygen anyway we can get it!! Max is still on about 75% oxygen, and his blood pressure has been running high. The doctors are doing a number of tests and such to try to determine why that is. We hope to know more about that today.

Thank-you to everyone who prayed for Wes' surgery this morning. God held him tight through the procedure, and now we pray that his recovery goes as smoothly as the procedure!!

Wednesday, April 22, 2009

What a day

What a difference a day makes.  Praise the Lord.  Max is down to 75% on his oxygen with no other changes other than the use of "lasiks" to help him pass additional fluids.  This is still quite high, but he has been a lot more stable today than he was yesterday, and if he does de-saturate, there is some room to give him a little shot of oxygen without having to turn up the vent settings.  Wes has had a pretty good day as well, no changes to his vent settings, but he has also been much more stable.

Those are all good things and huge answers to prayer, but without a doubt the highlight of the day (maybe the year) was that Kate's mom was able to make the trip to see the boys today.  Kate and I did not think this was going to happen, but God gave Mom the desire and the strength to make the trip...and what a special time it was.  Many of you know that Kate's mom has been fighting cancer for 5 and a half years, and it looks like that fight might be coming to an end.  A week ago today, Mom's Hospice doctor said that she is likely in her last week of life...so you can about imagine how special it was that Mom was able to see the boys today.  She was able to touch them both and tell them how much she loves them and how much Jesus loves them.  She then told them that she wishes she could see them everyday, and that she is so excited to watch them grow into beautiful Christian men.  I could never explain in words what this meant to Kate and I.  I am not sure that I can think of a more special moment.  Kate and I then had an opportunity to pray with Mom, and it was just so amazing.  What an awesome God we serve.  We (and so many of you!!!) were praying so hard for Max, and He answered that prayer...and then gave us a gift that we could have never imagined.  I am simply speechless...I just cannot wipe the smile off my face.

On top of all of that, Kate was able to hold Wes for over an hour tonight!!  They call it "skin-to-skin", and many of the nurses and doctors are firm believers that nothing helps the respiratory system more than spending a little skin-to-skin time with mom or dad.  It was a really special time for Kate and Wes, and even me...even though I was on the sidelines doing crossword puzzles.

Thank-you to everyone who offered up prayers for Max and Wes last night and through the day.  God heard those prayers, and Max is heading in the right direction.  Wes has his PDA Ligation surgery tomorrow morning, so we covet your prayers that God will guide the hands of the surgeon and other doctors.

Also, I need to say that I know many of you know Kate's family personally, but I do need to ask that you respect their privacy through this trying time.  Mom needs lots of rest and does not have the energy for visits and phone calls.  We certainly covet your prayers that God will bless Mom with peace, and give the rest of the family strength through this very emotionally draining time.

The picture below is of Max with his Grandma Blauwkamp.

Tuesday, April 21, 2009

Wrong direction

Today was not a good day.  Max is really not doing well right now.  He has been on 100% oxygen almost all day.  To counteract this, the doctors turned up his vent settings by quite a bit.  His pressure is currently set at 40, which is the highest it has ever been since day 1.  He had been in the high 20s to low 30s, but is just not responding right now.  He had another chest x-ray today which showed some slight improvement in his lungs, but that improvement is not apparent in his respiratory needs.  His blood pressure has been running high as well, so the doctors do not want to try steroid treatments as they tend to increase blood pressure even more.  They are trying something called "lasiks" (I think) which should help him pass additional fluids and hopefully flush out any fluids in his lungs.  They are also running another culture on the stuff they suck out of his ET tube.  His blood work does not suggest that he is fighting an infection, but they want to make sure they are not overlooking anything.  Wes has managed to backtrack on all of his improvements over the last few days, too.  His pressure on the vent was down to 27, but is now up to 32 again because his oxygen needs started to climb.  He is also scheduled to have PDA Ligation surgery on Thursday morning at 7:30.

God...where are You?  It feels like our prayers are falling on deaf ears.  You promised to hear our prayers, You promised never to leave or forsake us...why does it feel like You are gone?  Come quickly Lord, touch Max and Wes, heal their tiny bodies.  It seems like the stage is set for You to perform a miracle that is beyond medicine's ability to explain.  The doctors are confused, we are scared...maybe now is a good time?  We are holding fast, but our grip feels weak.  Send help Lord, tell the raging waters to be still.

Monday, April 20, 2009

Bittersweet

We just got home from the hospital.  Wes actually had a really good day and has been able to come down on his vent settings by quite a bit, which is fantastic.  Max seems to be in a holding pattern.  He had another chest x-ray today and it showed no improvement in his lungs.  The theory is quickly changing from lung infection to chronic lung disease.  They do not diagnose a baby with chronic lung disease until they are 35 gestational weeks old, but his condition certainly supports this diagnosis.  Chronic lung disease can mean about a billion different things, and it is way too early to tell the severity of his condition.  He is very sick.  The waiting game is really starting to takes its toll.  The doctor also said that Wes looks like his PDA is opening again, and is leaning towards him needing to have the PDA Ligation surgery.  They will do another heart echo in a day or two to makes sure that is the right decision.  Kate and I really want to be happy about the progress that Wes has made (despite his open PDA), but with Max's situation it is very difficult.  We want to rejoice and praise God for the improvements, but this is so hard in the face of setback and unknowns.  With everything else that is going on in our lives right now, we just really want the boys to start taking strides in the right direction to give us some joy and balance out all of the heart break and anger.  Right now it does not feel like that is God's plan.  We just want to scream to God, "who do you think we are?  What makes You think we can handle all of this!!"  Send us relief Lord...our faith just does not seem strong enough to hold us together.

Sunday, April 19, 2009

No real improvements

The boys have not had any big improvements over the last few days.  Max's oxygen needs did come down into the 50s for a while, but are back up in the 60s now.  Wes needed to have his vent settings turned up a little bit last night due to high CO2 levels in his blood, but already this morning those levels look better.  Granted, they do not turn the vent settings back down until they look too good.  We also heard that Max's blood gas this morning showed high CO2 levels, so it is likely his vent pressures will be turned up as well.  They have not been getting much more junk out of Max or Wes' lungs over the last day or so, but we will keep praying that God will work through the antibiotics to heal their infections.  The nurse last night said it is very common with infections that things almost get worse before they get better...and it would be nice if things started to get better at a rapid pace!!  One answer to prayers is that Max is passing some fluids again.  He had been a little stopped up and puffy following his PDA Ligation surgery on Tuesday, but he had a diaper that weighted 34 grams last night, and another 30+ gram diaper this morning...that equals 2 ounces, or roughly 7% of his body weight!!  Also, they did start feeding Max 2 ml of breast milk again yesterday and he has been tolerating that well.

Kate and I know that this process is going to be a long one, we just really want these infections to break up and their lungs to heal.  It is obvious that the boys do not like being on the jet vents and they need to be given sedatives and Valium to calm them down so they don't pull wires and sensors off.  Max is on the 7th day of the 7-day antibiotic treatment and still has significant hazy areas in his lungs.  We will continue to trust that God is in control, we just wish that His timing was much more in line with our timing.  Our plan would be for them to both be perfectly healthy, just small...because we could really use a few less things to be concerned about right now.  

Father God, you know the desires of our hearts.  We are struggling with Your plan and Your timing right now.  Give the boys a good day, a day of improvements on their vent settings, continue to break down the infections in their lungs, keep them calm and keep us calm.  You have blessed us with the opportunity to be parents, a journey that took nearly two years of heartbreak and fertility treatments.  Although we have not been able to hold and cuddle our little boys, it has been so amazing to watch them grow and develop in their incubators.  The path ahead seems dim, the next step on this journey is unknown.  Guide us Lord, reveal your path to us, give us the strength and the feet to walk that path in faith.  Cover Maxwell and Wesley with Your love, be the air that they breathe, calm their tiny bodies, heal their lungs.

In the name of Your son, Jesus Christ,

Amen

Friday, April 17, 2009

Three weeks old!

Hard to believe it has been three weeks already...and it is hard to believe it has only been three weeks.  Max had a setback last night.  He had been doing fairly well all day, but at 3:00 A.M. this morning (Friday), his blood gas was not good.  They increased the pressures on his vent s his oxygen needs had climbed to 100%.  He was on 100% for the better part of the day, and when I got to the hospital tonight the respiratory therapist was "suctioning" him out (sucking junk out of his lungs via his ET tube).  For the last few days they have been getting next to nothing, but today they started to get some meaningful junk out of Max's lungs.  This is a good sign that his infection is at least starting to break up.  Through the evening they were able to turn him down to the 70% range on his oxygen.  We are praying that they keep getting a bunch of junk out of his lungs and all of that new "open" area helps his oxygen needs continue to decrease.  Wes had a good day and continues to tolerate his feedings well (they upped him to 10.5 ml today!!) and they continue to ween him off of the TPN IV fluids.  His vent settings were relatively unchanged throughout the day, and his oxygen needs continue to be in the 30-40% range.

We did not have the boys baptised today.  I got a little ahead of myself in thinking that Mom was going to be able to make the trip to GR.  We still plan to have the boys baptised in the near future, but we will be playing it by ear as far as scheduling goes.

I got a chance to read the boys their first book tonight...it was called "Big Bulldozer", and was very enlightening.  It turns out that bulldozers move dirt.  Both of the boys were quite tired and did not seem to respond too much.  After we prayed with them, I sang "I love You Lord" to Max, and he tried to open his eyes and turn his head towards me.  It was about the coolest thing ever.  Kate and I sang "I Love You Lord", "Sanctuary", "Jesus Loves Me", and "Be Still and Know" to the boys every night when Kate was pregnant, so it is so amazing to see Max, who is still somewhat sedated from his surgery, respond to that song.  I hope it is as comforting to him as it is to me.  I love you Lord.

Thursday, April 16, 2009

A good day

Today was a good day.  Kate was able to spend a number of hours with her mom, dad, and sister this morning.  Kate's aunts were over cleaning mom and dad's house, dad and I ate some lamb stew over lunch time, and mom was very much alert...a stark change from yesterday.  On top of all of that, both Max and Wes are starting to show some improvement and their vent settings have come down a bit.  God is so good.  I wasn't sure that I could take another day like yesterday, and He gave me exactly what I needed today.  Mom was doing so much better, Max and Wes both showed some improvement, and we had a great dinner with some dear friends.  And I had some lake perch...not any of that ocean perch stuff, but the real deal. Now all I need is sleep!!

Thank-you for all of the comments and prayers...they have all meant so much.  Thank-you to everyone who has taken the time to post a comment, send a card, or say a prayer.  Your encouraging words and prayer support have, and continue to, sustained us.

Kate and I were hoping to have the boys baptized tomorrow at the hospital.  We wanted to do this both for ourselves, but also so that mom can see them be baptized too.  We ended up canceling things because of how mom was doing over the last few days, but after her improvement today, we may try and get things scheduled for tomorrow again.  Please pray that God will keep mom's pain at bay and give her the strength to make the trip to GR if that is His will.


Wednesday, April 15, 2009

Where to start

I will apologize before I even begin this post because I am sure it will be disjointed and confusing because my thoughts are just all over the place.


First, the boys. Max is recovering from his surgery still. We were hoping for amazing results after he had to go through all of that crap with the surgery yesterday, but it almost feels like nothing has changed since the initial improvement in his blood pressure. I was at the hospital late tonight praying and saying good night to the boys, and the nurse said that a chest x-ray taken last night of Max showed that his lungs were getting worse, meaning more "cloudy areas." They did reduce his vent settings by quite a bit yesterday hoping he could make up the difference on his own. This did not work well. His oxygen needs climbed to almost 100% and they ended up turning his pressures back up on the jet vent. He is currently in the 60-70% range on his oxygen. Max does have a sizable leak in his ET tube, meaning that the diameter of the tube is more narrow than his trachea, and a good bit of the air/oxygen they are giving him is escaping back up his throat. This could be a reason for his higher oxygen needs, but they cannot be sure. We pray that the antibiotics continue to break down the infection in his lungs and that his need for the ventilator starts to diminish. Wes is doing okay. He is still on the jet vent with very similar circumstances to his brother. He also has an infection in his lungs, but the nurse was not sure if it was the same infection Max has or not, but they are treating it with the same antibiotic, which sounds like "oxycilin", but I am sure I am saying that wrong. Wes also has a big leak in his ET tube. They have not tried to intubate them with a larger tube because they do not want to stretch or permanently paralyze their vocal chords, so they deal with the leaks and try and find a position that works well for the boys. Wes' oxygen needs have been in the 30-40% range. Wes has been tolerating his feeding schedule well, and is up to 9ml of breast milk every 3-hours with a packet of Human Milk Fortifier (HMF) to add a few more calories. They have begun to ween him off the TPN fluid, which is a conglomeration of about 75 nutrients that are given through his IV. These are essential nutrients, but can be harmful to the liver, so they like to get them off this as soon as they are getting enough breast milk.


Please pray with us that the boys can break out of this holding pattern. We do not know what to expect day to day, but it seems like the boys have taken a few steps back and just stayed there. Hearing that Max's chest x-ray looks worse after the surgery and a couple days on the antibiotics is just heartbreaking for me. He was going to have another x-ray a few minutes after I left the hospital (but the results trail the x-ray by about 10-12 hours it seems), so we are praying that the doctors will be blown away by the positive change.


One thing that I have not discussed on this blog yet is Kate's Mom. Many of you probably know that Mom has cancer. She was diagnosed on November 28, 2003 after she went in to have her gall bladder removed and the doctors could visibly see the cancer on her ovaries. After a number of tests and months of unknowns, it was determined that she had a very rare form of cancer called neuroendocrine cancer. Due to the rarity of the cancer, she was treated by a specialist at the M.D. Anderson cancer facility in Houston, TX. Her and Dad made countless trips down there for tests and consultations with the doctors. Some trips returned good news, others did not. To make a long story short, it looked as if the chemos and other various drugs were not keeping the cancer cells at bay, so she was turned over to the research department at M.D. Anderson and participated in an experimental drug trial. She was the only person in the country with her type of cancer on this particular experimental, non-FDA approved drug. After about 6-months, the decision was made to stop the trial due to tumor growth. The more painful decision was also made that it was time for Mom to come home (she stayed in Texas during this 6-month period), which meant that her treatment had shifted from "let's kill this cancer" to "let's keep Mom comfortable." She came home in early March. She has since started to decline quite quickly, and even more so in the last couple of days. We had a meeting with her Hospice doctor this evening and he said that based on his information and what he was hearing from the family that he would guess that Mom is in her last week of life. I don't even know what to type. In one breath I want to be furious at God, and in the next I cannot help but see how He has been in control of this whole situation. Mom was at our wedding almost 5-years ago, she had her first grandson, Luke, born 10/11/06, Joe and Lisa (Kate's sister) were married in December 2007, and our sons were born on 03/27/09. And that does not even begin to paint the picture of the great times we have had as a family over the last 5+ years. Mom's initial diagnosis was 3-6 months in 2003. The Hospice doctor tonight said that he would have given her 18-24 months based on her initial CAT scans in 2003. As I look back on even the last 45-days, God's hand is so evident. Mom came home about 5-days before Kate went into the hospital on March 10. She was able to visit Kate a number of times, and she has been able to meet, spend time with, and touch Max and Wes. What a blessing that Mom got to meet our sons, but also that Kate is no longer on bed rest, and she can go and spend time with her mom and say all the things she wants to say. Again, I do not know what to type. Please pray for Kate. She is struggling with being a new mom to Max and Wes and the thought of her mom not being around to help. I know Kate will be an amazing mother, because Myra is an amazing mom. Please also pray for Kate's sister Becky who is pregnant with her second baby, and is due in July, just a few days before Max and Wes' original due date. Kate's little sister Lisa lives in Florida and is coming home this weekend, so please pray for traveling mercies and God's timing. Also, keep Kate's dad in your prayers. He has been through so much with Mom, has seen her poked and prodded for more than 5 years, made 20-30 trips to Texas with her, driving, flying, whatever worked. The graciousness with which Mom and Dad have handled this disease has been an inspiration to me. How can someone faced with the worst of the worst circumstances still have joy? Still praise God? I pray that I can take what I have learned from their example and apply it to my journey with Max and Wes.


Delayed update

Sorry for the delay, but we found out late last night that Wes' surgery for today was canceled. they performed another heart echo on him yesterday, and his PDA has started to close on its own at a quick enough rate that the doctors do not feel it is worth putting him through a surgical procedure. Praise God!! More answered prayers!!

Max continues to recover and had a good day and night. The doctors have really started to ween him down on his vent settings, and he has handled the change well. His need for oxygen has increased as they have turned the pressures down, but they said they would rather give him some more oxygen in exchange for reduced pressures. Also, a chest x-ray done last night shows that his lungs continue to move in the right direction. The improvement is likely a combination of the jet vent, antibiotics and the PDA surgery...but the real reason is that God has put His healing hand on Max and answered our prayers.

I will commit to a more comprehensive post tonight to get everyone up to speed on both the boys and some other things going on in our lives.

Tuesday, April 14, 2009

All done!!

The doctor just stopped in and said the procedure is done and Max did great. He said the "ductus" was quite large and he can see why Max was having some difficulties. As soon as he clamped or stapled the valve closed, his blood pressure started rising almost immediately, which is a very good sign. He said Max did great, and there were no issues with deflating or re-inflating his lung. Praise God for watching over Max and guiding the surgeons hands. What a mighty God we serve!! We are going to go see Max now!!

The procedure is underway

We just talked to the heart surgeon and the anesthesiologist and they said that the surgery should take about an hour. The anesthesiologist said that Max will be very comfortable for the next few hours from the muscle relaxers and pain medications. We know that these doctors are at the top of their game, but that alone does not give us the comfort we desperately need. Lord God, guide the hands and decisions of the surgeons, doctors and nurses...but also hold Max very near to You. Give him sweet dreams as he sleeps. Help the medications to keep any pain or discomfort at bay. We trust that You are surrounding him with Your love, a love that is so much bigger than even our love for him as parents.

We did get a call this morning that Wes needed to be put on the jet vent last night. His CO2 levels were high based, so they did a chest x-ray on him and he also has some "cloudy" areas in his lungs. They are performing all the tests to determine if he also has an infection. He had a recent blood test this morning and that showed a big improvement over last night, so we are thankful for that news. We pray that he does not have an infection, but if he does, that it be a treatable virus like Max's.

I will get another update on here when we hear how things went. Thank-you to all of the faithful prayer warriors that are holding up my son in prayer this morning. Words cannot express my gratitude.

Monday, April 13, 2009

Quick update

Just wanted to get out a quick update on the boys so far today. Max is starting to show signs of improvement based on this morning's chest x-ray. His oxygen dependence is also coming down and has been in the 40-50% range, which is a big step in the right direction based on the 50-80% range he was in over the weekend. We also just heard that Max will be having surgery to fix his PDA condition tomorrow morning at 10:00 a.m. When I talked to the doctor this morning, he mentioned that they have determined that Max does not have pneumonia, but another infection caused by a bacteria called "Staphoria." I am not sure if that means he has a Staph infection or not, but the doctor did say that it is a very treatable infection and they have already started him on the appropriate antibiotics, which will be a 7-day treatment. We are relieved that they have identified the cause for the fluid build up in Max's lungs and that it is a treatable, known cause. the doctor also examined Wes and said he is doing well. He is being fed 7.5 ml of breast milk every 3 hours (this is up from 1.5 ml every three hours just 5-6 days ago), and he is tolerating that well. The doctor mentioned this morning that he did not hear a murmur when he listened to Wes' heart, but Kate did tell me this afternoon that Wes is scheduled to have the PDA surgery on Wednesday at 10:00 A.M. I am assuming they will confirm that he needs the procedure before putting his little body through that for nothing.

Heavenly Father,
Thank-you for being such a faithful God. You have promised to hear the prayers of your people, and once again have answered those prayers quickly. Thank-you for the improvement in Max's lung "capacity", and we pray that You continue to heal his lungs, whether that be via the antibiotics or by a method beyond our comprehension. Thank-you that Wes continues to grow and gain weight and tolerate the increased amount of food. Lord, we are scared for our sons as they face a common, yet invasive surgical procedure tomorrow (Max) and Wednesday (Wes). Guide the hands of the heart surgeons that will perform the procedure. You have blessed us with such an amazing capacity to love, but that same love makes it very difficult for us to willfully put our children through a painful procedure, despite the fact that they will be healthier after the surgery. It is so tough because Max and Wes cannot even cry because of the breathing tubes in their throats. Be very near to them Lord...be the air in their incubators, be the bed that keeps them warm, tell them how much we love them and care about them.
Thank-you Lord for surrounding Kate, Max, Wes and myself with such a loving and faithful group of family and friends. We have learned day in and day out what a gift it is to be members of the Body of Christ. We have been so blessed to experience Your love and peace as it radiates through Your people. Although I cannot "see" You...I see You everywhere. Thank-you for revealing Yourself so clearly to us. In the dark times when we feel so alone and scared, Your people have interceded on our behalf and You have lifted the cloud of darkness, answered their prayers, and shown us that You were in control at every twist and turn of this journey. Blessed be Your name.

Sunday, April 12, 2009

Happy Resurrection Day

Happy Resurrection Day everyone!!  I refrain from calling it "Easter" as "Easter" is a derivative of "Isthar" who was a pagan goddess of sexuality and fertility.  A festival in her honor was offered in the early spring when pagans were hoping that Ishtar would provide them with a bountiful crop, but the festivals also included many sexual perversions, and her followers would refer to them selves as "sacred prostitutes".  Some of the symbols used to represent Isthar included eggs and rabbits...symbols of great fertility.   I prefer to keep pagan traditions out of my celebration of what I consider to be the most significant event in history.  So you can all feel sorry for Max and Wes as they will likely never know the joy of finding more eggs than anyone else on an Easter egg hunt.  It seems that the pagan or secular world has a habit of hijacking any and all religiously significant holidays.  When is the last time someone handed out a copy of Martin Luther's 95 theses instead of a Snickers bar on Reformation Day (also know as Halloween)?  What a monumental event in the history of Christianity when Martin Luther had the gall to suggest that salvation could not be purchased or earned by good works, but that it was God's alone to grant.  How could that be?  How can the church continue to build churches like the basilica of St. Peter if people believe that the only way to eternal life is through Christ Jesus and not through purchasing salvation from your local church?  Let's dress like clowns, demons, princesses and Darth Vader and collect as much candy as humanly possible to commemorate this historic event!!  I assume my sarcasm is shining through.  

Back to the theme of this blog.  Max and Wes have very different circumstances to face, so I will begin to discuss them individually.  Max is not doing real well.  He remains on the jet vent in an attempt to open up areas of his lungs that are filled with fluid or otherwise blocking the passage of air.  He has been receiving daily chest x-rays and the x-ray today showed further deterioration of what I will call his "free lung capacity."  As I mentioned yesterday morning, they are monitoring a culture of some fluids that were extracted from Max's lungs.  this has yet to grow any pneumonia bacteria, but the doctor today said they are going to treat Max as if he has pneumonia.  This includes the use of antibiotics, which was started this afternoon.   Kate and I saw the chest x-rays and the free lung capacity shows up as black in the picture, and the "blocked" areas show up as opaque.  The most recent picture we saw was of Saturday's x-ray and I would estimate that his lung capacity is in the 35-45% range.  After today's x-ray showed continued deterioration, the doctors made some adjustments to the pressures on the jet vent.  There is a delicate balance and they are trying to find where they provide enough pressure to open the blocked air ways, but at the same time do not over inflate the air ways that are currently open.  Over inflation can cause permanent damage to the lungs.  As the doctor explained it to us, Max's lungs are too immature to have "air sacs" like you and I, but there are similar cavities in his lungs.  There is enough mucous like fluid in his lungs to "trap" old, under oxygenated air in these cavities, so his oxygen dependence has continued to be high.  In addition, the heart echo confirmed that his PDA is again open.  This is also contributing to his oxygen dependence as blood is essentially being diverted away from his lungs as long as this valve remains open.  The doctors are now saying that surgery is the most likely form of treatment, and that Max will be pretty high on the list to have the procedure done.  We will know more about when this procedure might take place tomorrow.  The procedure is quite common and is actually done right in the incubator.  An incision is made between two of his ribs on his left side and they have to collapse his left lung to access the valve.  Once they do,the valve is stapled shut, the lung is re inflated, and they glue the incision shut.  I am certainly concerned about having to collapse his lungs as he does not have a lot of good lung left.  Please pray that before the procedure is performed that the jet vent will free up some of the blocked areas of his lungs while not damaging the good areas.  Wes has been doing well on the traditional ventilator, but his oxygen needs have been in the 40% range, which is higher than it has been.  His heart echo showed that his valve is open as well, and will likely have the same surgical procedure as Max, but the time frame is not yet known.  Wes has been more stable, so Max will likely have the procedure done first.  Kate and I are obviously concerned about all of this. Max is going through a lot right now and we just want to be able to switch places with him, to take away the challenges that lie ahead. Wes is doing much better than Max right now, but nothing is certain with him either.  Please pray with us that God will touch their lungs, remove any fluid that is keeping them from getting the precious air that they so desperately need, and help their brains to continue to mature.  This setback for Max has reminded Kate and I how delicate this whole situation really is, and we are scared for our sons.  God has been so faithful in protecting our little boys, and we were selfishly hoping that God's plan would be to have Max and Wes sail through the NICU like no other kids their age and size ever have.  It pains us to hear that they are on a "normal" course as the doctor said, because we want their course to be extraordinary, unexplainable, never-before-seen, etc.  Our prayer throughout this journey that began 33-days ago is that regardless of the path that God has laid out for us, that it be for His glory.  We are struggling with that prayer right now because we want our sons to grow big and strong, not suffer and have setbacks.  It is a much easier prayer when things are going better than expected, not so much when things are getting worse.

Please join us in praying for wisdom for the doctors as they make key decisions on the day to day care of Maxwell and Wesley.  We also pray that the healing hand of our Heavenly Father will be so evident that no medicine or science can begin to explain it.  

Saturday, April 11, 2009

The honeymoon is over

Max has hit a bit of a bump in the road.  He has been struggling to keep his oxygen saturation stable, and has required 60-70% oxygen over the last day or so.  A chest x-ray was done which showed some deterioration in his lung capacity.  That could mean he has some fluid building up in some of the unused air sacs in his lungs.  The decision was made yesterday to move Max from the conventional ventilator to the jet or high-frequency ventilator.  The jet vent gives many small breaths of air, and helps to open the closed air sacs.  Max has tolerated this change fairly well so far, and his oxygen needs have been more in the 45-55% range.  The doctor also ordered a culture of the fluid in his lungs to determine if he has pneumonia.  They check the culture in 24, 48, and 72 hours to see if any bacteria has begun to grow, an we pray that nothing does grow.  While on the jet vent they also stop feeding Max breast milk, I am not entirely sure why, but the nurse said they almost always stop any breast milk feedings while a baby is on the jet vent.  The doctor also ordered a heart echo on both of the boys this morning because he thinks that their PDA valves may have re-opened.  If they have, he indicated that surgery may be the next step.

Kate and I understood the setbacks were going to be part of this whole journey, but this seems like a big step back.  Wes has been doing fairly well, but has also been needing more oxygen lately.  Wes is back up to his birth weight, maybe a few grams above, and Max is still slightly under his birth weight.  Please pray with us that the boys continue to grow and develop, that their PDA valves will still be closed, and that Max will respond well to the jet vent and be free of any pneumonia.

Thursday, April 9, 2009

New picture


I have had a few requests from people for pictures with some sort of scale to show the boys' size.  That over sized bracelet on Max's arm...is my wedding ring.  It slides all the way up his leg too.

Just a short post

I just wanted to leave a short post to say that the boys continue to behave pretty well.  Their vent settings are fluctuating quite a bit, so it is safe to say that the "honeymoon phase" has passed.  They are still doing well, they just need minor adjustments from time to time.  Part of the reason they have a hard time keeping their breathing and vent settings stabilized is because their vent tubes are too narrow.  This causes what they call a "leak", which simply means that a portion of the pressure and oxygen they are being given via the ventilators is escaping, or leaking, before it gets to their lungs.  So, depending on their position (how they are laying), they can have small leaks or big leaks.  But, at the same time, they cannot stay in any one position for too long, or their heads will not be round later in life.  The boys tend to do their best when they are on their bellys because it allows for more lung expansion.  The breast milk feedings were doubled yesterday, and the boys tolerated that well, so we are encouraged that their digestive systems seem to be working properly.  Kate is healing very well too, and she has her 2-week follow-up appointment tomorrow, so we are praying that the doctors have nothing but good things to say.

I am feeling a little under the weather, so I am heading to bed...hope you all have a great night of sleep!!

Wednesday, April 8, 2009

Doctor Doctor

today was the meeting with Doctor Doctor.  Neither Kate nor I knew what to expect from this meeting, but Dr. Dr. kind of gave us the run down.  It was somewhat overwhelming because he kind of just gave us the overall statistical picture, versus the Max and Wes picture.  So we were left to decipher what was important.  I understand that some doctors choose not to give too much hope, or even use optimistic inflections in their voice, because nothing is guaranteed with babies this small.  We think they are doing well, Dr. Dr. said they are running what he would call a "normal" course for 24 week old babies.  Some of the other doctors in the practice (9 neonatalogists in total) have said they are very happy with the boys' progress, so it seems to depend who we talk to.  Dr. Doctor also talked a lot about what "could happen" and health and development risks that we should be aware of going forward.  Again, this was overwhelming because he gave the absolute worst possible scenario and then ended the talk with, "but they might not have any problems at all.  Maybe they will do very well."

We don't fully understand the approaches taken by the doctors, all we know is that Max and Wes are two amazing little boys.  The hardest part about days like today is it changes our focus from "one day at a time" to what could happen weeks down the road.  When we start to think about that, the whole situation turns into a unbearable weight on our shoulders.  So we just need to get back to focusing on and being thankful for today.  We adore every minute we get to spend with our sons, every dirty diaper Kate gets to change, every time they open their eyes and look at us and every time we get to hold them because they pee on their blanket.  I attended Christian schools all through my pre-college education, grew up going to church any time the doors were unlocked, I have made public profession of faith, done Bible studies with various groups of people, multiple service projects to various areas in the county, etc., and it took two little boys that weigh less than 2 lbs and have yet to make a noise for me to understand how much God loves me.  Praise God for being so much bigger than we could possibly imagine.  

Tuesday, April 7, 2009

Recovering from yesterday

Late last night Max was taken off his hybrid vent and put back on a traditional vent because his carbon dioxide levels were climbing. Their setting were all over today, as they are still recovering form yesterdays adventure to the CPAP. Wes has gone off insulin, and Max has gone on. The doctor we spoke to today thought they were identical twins because they seem to share ups and downs together. I explained that they are fraternal, however their Father refers to them as "fertilitwins." 

The nurses have started to include Mark and I in the boys "care" time. We change their diapers, take their temperature, and weigh them.  It is really exciting for Mark and I because we get to interact with the boys. As part of the weighing process we get to hold them, if only for a moment. 

Tomorrow we have our first meeting with Dr. Doctor (that is his real name) he was the neonatalogist that was present at the boys birth. He will share with us how the Max and Wes are doing and what we should anticipate in the weeks ahead.

We want to thank everyone for their prayers. We know in our hearts that the progress the boys have shown is a direct reflection of their heavenly Father watching over them. If we have ever doubted that God answers the prayers of His people,  all we have to do is look at Max and Wes and all our doubts are wiped away.

Monday, April 6, 2009

Ups and downs...and dumps

Today was a day of some big changes. The doctors thought today was a good day to get Max and Wes going on the CPAP machine, which is like the ventilator in that it provides some pressure to keep the lungs from collapsing, but it is different in that it does not supplement the boys' breathing at all. They do all the breathing on their own, no "back-up" from the ventilator. The CPAP looks kind of like a SCUBA mask, but it has two lines that go up the boys' noses instead of a tube that goes down their throats into their lungs. Clearly, this is a much less invasive way for the boys to breathe...but let's keep in mind that they are about 14-weeks shy of when most babies start breathing on their own. Let us also keep in mind that my medical degree in neonatalogy is only 10-days old. I am sure you can tell by my tone that things did not go great. Wes made it about 5-hours before needing to be re-intubated and put back on the ventilator. He just wasn't taking enough deep breaths to keep his blood oxygenated, and they had him breathing almost 100% oxygen (compared to 21%, which is "room air"). Max is still on a sort of hybrid CPAP/vent setup where they do not have a tube into his lungs right now, just the CPAP mask with the tubes up his nose, but the vent is still providing him with "breaths" of air periodically, just not directly into his lungs. This may work, may not...they are just going to give it the old college try.

Kate was at the hospital all day and didn't enjoy watching the whole process of extubating the boys and putting them on the CPAP. The other thing that adds some anxiety to the mix is after they (the respiratory people) were done doing what they do, the alarms started to go off. Alarms have become a familiar sound. Whenever the boys' heart rate, oxygen saturation, or respiration (breaths per minute) get outside of their set parameters, the alarms go off. They could be good alarms, or bad alarms, but they are alarms. A few of you may know that I have never met an alarm clock that I cannot sleep through...for hours. I set an alarm clock to wake Kate (or in years past my parents and roommates) up so she can wake me up...just one of at least a billion things that I am sure she loves about me...but these alarms are different. I cannot get a crossword puzzle done around these things much less one wink of sleep. Something about them being directly related to our sons that make them a little more nerve racking. Needless to say, when they put the boys (especially Wes) on the CPAPs, the alarms were ringing ALL day long. Kate is ready for some quiet!!

I made it back to work today, and it really went well. I certainly missed being around the boys and Kate, but my co-workers made it an easy transition. Granted, I did not get a lot of work done between sifting through 100's of emails and catching up with people, but I was really dreading it and it was not so bad. Thank-you to everyone who said a little prayer for me today.

We are super happy that the doctors feel that things are going well enough to try and turn the boys' world upside down. So far the results have been mixed. Please pray that Max can continue to keep himself oxygenated and breathing well with the hybrid setup he is on now, and pray that Wes can recover from his busy day and continue to ween down on his oxygen dependence.

Oh, I almost forgot...it is safe to say that the boys' guts are officially "primed". Wes followed up his earth shattering BM with yet another today...and his mom got to change it for him!! Kate said it was beyond comprehension that it came out of his little body. The nurses were all astounded, too...which makes his dad very proud!! Max made a little mess as well, but I had to change that diaper so it wasn't nearly as cool. They are doubling the amount of breast milk they give the boys tomorrow, so we are hoping that they tolerate that well...and keep pooping when only Kate is around!!

Sunday, April 5, 2009

Kate's First Post

This is my first post. I have a lot to live up to, Mark is an amazing writer.

First, thank you to everyone for your thoughts and prayers. We are so blessed by all of your comments and prayers. Words could never describe how amazing it is to feel the prayers for our little family. This journey is the hardest thing we have ever faced. We could not get through this without our faith and the prayers and encouragement of family, friends, and strangers.

We covet your prayers for our little miracles. They have a long road ahead of them. They are little fighters, but they have many months of unknowns.
Also, please pray for my amazing Husband, he is going back to work tomorrow and is having a hard time knowing he won't be able to see the boys as much as he would like. He has been so strong over the last month, I am so blessed to have him.

So, here is an update on Max and Wes. Max had a successful picc line put in last night. He is now enjoying sleeping on his tummy because all the IV lines are out of his belly button. He also had a head scan(brain ultrasound) and it showed improvement with bleeding. Also, improvement in the area of his head that they think may have been a stroke. The doctor said that in six weeks or so they will know more about that. Wes has had an uneventful couple of days. They are still monitoring his blood sugar level, it has been pretty good lately but they are still giving him insulin to keep it under control.

Thanks again to everyone. We are so blessed to have all of you praying for us.

Kate

Friday, April 3, 2009

Time for sleep!!

This is going to be a short post because Kate and I are exhausted and ready for a LONG night of sleep.  The boys had a good day.  They did attempt a "pick line" in Max today that did not go too well.  They decided to let him recover overnight and try again tomorrow.  It is possible that if they cannot get the line threaded through the veins in his arm that they will try a vein in his head.  We would rather they not do this because it would just seem odd to have a line threaded through a vein in his head down to his heart, but they are the experts and will only do it if they feel it will be the best for Max.  Wes had another brain ultrasound today and everything looked great, so we are super pumped about that.  Also, the boys are not next to each other in the nursery right now...their arrival was not entirely expected.  But, Max's neighbor was discharged today and they were planning on moving Wes over by his brother.  Kate and I are excited about this so we can sit closer to each other too as we normally have to take turns sitting by each of the boys because there is limited space at the bedsides.  It will feel good to have the "whole family" together again!!

It has been a long, crazy week, but the boys are doing good and we praise God for carrying Max and Wes and Kate and I through the first of what will likely be many many weeks.

Thursday, April 2, 2009

Little miracles

We just cannot stop singing God's praise for the miracle He worked in our little guy's bodies today.  We were bracing for them needing the PDA surgery, but praying that they would not.  We were not expecting both Max and Wes' valves to be closed after round one of the medicine!!  What an amazing tribute to the our Father's ability to do so much more than we could ever ask or imagine.  Thank-you to everyone who prayed with us that these valves would close...our prayers were answered!!

Max decided to follow in his brother's footsteps today and try breathing on his own.  I was sitting next to his bed reading a book when the alarms went off.  That is not uncommon, but this one was a little different sounding.  I realized quickly that something might be awry, so I decided to clear out and let the nurses do their thing.  He had indeed "extubated" himself, the opposite of "intubating."  The nurses gave him an opportunity to breathe by himself, but decided that he did need the help of the ventilator.  So he had to be intubated again, which is typically done by a doctor as it is a very precise procedure.  After the procedure, they take an x-ray of his chest to make sure it is placed properly.  In no time, Max was sawing logs like nothing had happened.  Wes had a relatively uneventful day, but they did decide to exchange the IV in his belly button (umbilical cord) for what they call a "pick line".  This pick line is an IV in the arm that threads all the way up the vein almost to the heart.  His nurse Cathy (one of our favorites) gave him a stern talk that he just needs to relax and let the doctor do what he needs to do.  He listened to her and just looked at her while holding his arm nice and straight and still for the doctor.  Kate and I are still a little uneasy about being too close for these procedures, so we kind of hung out by Max until they were done.  He handled it like a champ and an x-ray confirmed that the line is located exactly where it needs to be.

Without a doubt the biggest highlight of the day was that Max peed all over his blanket while the nurse was changing his diaper.  That in and of itself is hilarious to me, but the really cool part is that I got to hold him while they pulled the blanket out and put in a new one.  I have so been looking forward to this...I finally got to hold one of my baby boys!!  Below are some pictures of the event.
I could not figure out how to get the following picture to rotate, but I think you can still get the picture.
My first reaction was sheer elation.  He is just so delicate, yet fully formed.  For a little guy that spent only 63% of the gestation time carefully planned by God in his mother's womb, I am just blown away.  My second reaction was...he doesn't weigh too much!!  I do not fancy myself any sort of body builder, but I am pretty sure I could do infinity bicep curls with Max!!

Kate and I are just continually blown away by the wonderment of God's creation.  One post on this blog a few day ago said it so well.  The same God that created all of the billions of stars in the sky that are so big and so complex, created Max and Wes, who are so tiny.  And the really amazing part is that He cares so much more about Max, Wes, you and I.  

My Dad was commenting the other night about how the valve related to the PDA condition the boys had is such a great argument against evolution.  If you have a few minutes, check out the following link:

The following link is a great video by Louis Giglio about Laminin that my Dad and uncle sent to me.  Take a few minutes to watch it if you have the time, it really spoke to me and I hope it does the same to you:

Answered Prayers!!

Praise the Lord!! We just found out that both Max and Wes responded well to the medication to help their PDA condition (the valve that did not shut when they were born) and they are both closed!! No surgery, no more medicine...what a mighty God we serve!! We praise God for working in and through the medicines and doctors/nurses to cure this condition...He truly answers prayer!!

Wednesday, April 1, 2009

Adorable

Today was another good day.  Praise God!!  Those little dudes are just absolute fighters, so they got their Dad's good looks and their Mom's resolve.  Wes kept things a little more tame today, he decided he would keep using the ventilator to assists his breathing...at least for now.  He has had some high blood sugar over the last couple of days, and they have been giving him tiny doses of insulin to keep that under control.  The reports today showed that his blood sugar was much better, so they have discontinued this treatment for now.  Max had a pretty uneventful day as well.  He seems to be taking the breast milk well and they have been able to continue feeding him at regular intervals.  Both of the boys are still up and down on their vent settings, which is very common.  The ventilator has many different settings on it, but the primary controls are as follows; Breaths per minute - the number of breaths the machine takes for the boys every minute, they have been taking some breaths on their own, but if they forget to, the machine will not let the number drop below the set amount, about 40-45 for both boys right now.  Pressure - this setting controls how much pressure the machine uses to inflate the boys lungs and this setting changes frequently.  Finally, oxygen - simply the amount of oxygen the machine adds to the air going into their lungs.  This setting also changes frequently.  The boys have a tendency to "de-sat" as they call it (oxygen saturation in their blood drops) when they are handled for temperature, diaper changing, etc., so this setting is adjusted frequently as well.  We did get to watch one of the nurses do Wes' "care" as they call it, which is simply taking his temperature and changing his diaper.  They like the parents to start doing this pretty early on in the process, but Kate and I are still a little to scared to handle them too much...they just look too fragile.  So we just opted for the training course.  Wes' little butt is absolutely adorable.  If you can even call it a butt, the dude doesn't have an ounce of fat on him, so it looks like his legs just attach to his belly and the skin on his rear has a little crease in it.  I should have got a picture.

I forgot to mention last night that they are both starting to open their eyes!!  It is about the coolest thing ever.  As parents, Kate and I are both convinced that they are looking right at us.  Some doctors might say that they cannot see very well yet, but we are pretty sure they looked right at us.  It absolutely melts our hearts.  When we were praying with Max last night he looked right at us, almost with a, "I am doing good mom and dad, Jesus hangs out with me and my brother when you are gone" look on his face.  So cool.  They really have to try to open their eyes too, which makes it even more adorable.  Their little foreheads get all these wrinkles on them because they are putting forth so much effort.  

Both sets of grandparents got to see them today as well, and they were very well behaved (both Max and We and their grandparents).  They both opened their eyes to show their grandparents how big and strong they are getting.  I took a couple of pictures tonight to show you how they sleep...it is hilarious.  
This is Wes all bundled up and ready for some good sleep:

And here is his brother Max all sprawled out enjoying his new found room to stretch!!

Thank-you to every one who has been praying our little guys through the last 6 days.  The nurses all say that they are doing really good and that their feisty attitudes are very good signs that they are going to keep fighting.  We know each day is uncertain, but we thank God for his providence in carrying these little guys through almost their first week of life.