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.