HOME!!!!!

Wow I cannot believe that it is already Thursday!! Where did this week go?! Oh that's right, it went to time spent bringing my boy HOME!! After a 179 day NICU stay, we are overjoyed to have him home with us and in our care 24/7.  So Monday started with a repeat eye exam.  The eye doctor saw even more improvements in his eye than before.  Because of this they do not want to transfer him at this time for an eye surgery he may not need.  There is still the possibility that we will need to head to Michigan at a later date for the surgery but Jordan will then be an outpatient.  We of course are praying that he will never need eye surgery.

So after we heard the good news on Monday, we set up home oxygen and then I was able to "room in" with him on Monday night.  This is to make sure that I can handle things on my own and that I am comfortable with the monitor and oxygen setup.  Our room was actually quiet! They didn't really bother us like you normally get in the hospital.  Jordan slept really well and I enjoyed my extra cuddle time.  The next morning we were set up for discharge.  He is HOME! Well....in our hotel home...lol.

Our first night was pretty uneventful.  This boy can eat..and poop...oh my!!  Jason absolutely adores having baby brother home.  He just cannot stop playing with him and staring at him.  He has had a couple of jealous moments but I was expecting those.  Besides the few moments of questioning why mommy could not jump right to his aid to provide him with his deepest desire of chocolate milk, he seems to love being a big brother.  And he is SO helpful.  I mean seriously.  I never thought I would be able to count on my two year old so much.  He hands me diapers, silences the alarm when Jordan is being wiggly, holds in the pacifier, and even just entertains with silly faces and high pitched baby talk.  LOL.  I am so very proud of my big boy!!  I know that eventually the newness of Jordan will wear off but Im hoping for another few weeks of my super helper!

Home oxygen is definitely a challenge.  First off, Jordan is constantly connected to this tank.  I still have the cords to deal with..not as many though.  His monitor is also very annoying but necessary and actually brings me much relief.  I don't know if I would be able to sleep as well if he was not on a monitor.  I know that the monitor will alert me to anything so I can rest comfortably knowing my boy is also resting comfortably.  I am going to need to work on figuring out how to get around with both boys, and the oxygen tank, lol...so far it has been challenging. Yesterday morning we went to continental breakfast (after daddy had gone to work so just me and the boys)...oh my..I felt like I had run a marathon when we got back to the room.  Its going to take some practice that's for sure.  Last night when daddy had come home from work we made a trip to Walmart.  MUCH easier with a second pair of adult hands!!  Jordan was wide eyed the whole time.

Now the follow up appointments start and our lives get crazy once more.  Well...I guess less crazy than hanging out at the NICU every day.  Now we actually have a few down days each week.  Jordan has three appointments scheduled for next week.  He will see the eye doctor, ear doctor, and pediatric doctor.  He is going to start with the regular pediatrician and then in a few months he will switch to the developmental pediatrician.  The developmental pedi likes to wait until the babies are around 6 months corrected age.  This way they have more to work on rather than just cooing and looking cute! Jordan doesn't really need any help with those things anyways!

I love love love all the baby sounds and faces! He just melts my heart.  Funny story...I started poking Jacob to look over to see Jordan's cute faces he was making while he was falling back to sleep after eating...Jacob gave me that look...Yes honey...I know that it is 2am but he was just so cute that I thought you had to wake up from your slumber to stare at him with me! LOL...Lets just say he did not agree that the cuteness trumped the sleeping.  Oh well...what can you do?!  Its hard to believe that Jordan will be 6 months old in two days!  What a blessing he has been in our lives.

My prayer requests are for continued healing in his eyes, continued steady weight gain, for us to all figure out a routine that works well for us, and that we all remain healthy and germ-free.

Thank you for praying with us throughout this journey.  With God all things are possible.  Jordan scientifically had a 15% chance for survival outside my womb.  Just look at him now!!  Every life is precious and every life matters.  Even in the womb.  Beyond blessed to have my family whole and complete! <3

Hurry, wait, nevermind, and the H word!

Wow the last week has been a whirlwind for us.  It is amazing how quickly God can bring you back to the center of His focus.  Since Monday we have been preparing for our trip to Michigan for Jordan's eye surgery.  Jordan has a retinal detachment.  According to his eye doctor and all the research I have done on my own, the only way to "fix" or "heal" a detachment is to perform surgery to reseal the retina to the back of the eye.  We have been told that Jordan needs this surgery so that it can prevent his retina from getting worse.  It doesn't even guarantee that he will have vision out of that part of his eye but it stops the detachment from moving into a more serious zone and location.  So, after hearing this news, we have spent all week on the normal "hurry and wait" status of the military.  Orders needed to be made, referrals verified, accepting physicians communicated with, insurance accepted, travel plans arranged and booked, and bags packed.  Although it took a lot of back and forth, we eventually were 100% prepared and just waiting on the call telling us when we were leaving.

Yesterday, I did get a call.  But it was not the one I was expecting.  Jordan's doctor called me right after lunch and wanted to update me on the transport. He told me that Jordan had an eye exam this morning and he wanted to discuss those results.  What the eye doctor saw was not something that any of us were expecting.  It appears that the retina is actually getting better and repairing on its own.  Like I said before, this doesn't happen.  From what the eye doctor saw, the retina looked like it was closer to the back of his eye and even smaller of a detachment area than before.  What a miracle!!  Right after his eye exam, the eye doctor called the specialist in Michigan to relay what he was seeing and both agreed that the best course of action would be to postpone transfer and recheck Jordan's eyes on Monday.  If the retina is indeed healing itself, then there is no need to put him through another surgery.  So now, we wait.  We will stop the transfer process as of now and wait for the results of Monday's check.  If Monday's check shows any improvements at all, we will continue to delay surgery.  Please pray with us that Jordan's eye would be completely healed so that no surgery is needed.

We are very happy about the possibility of no surgery.  Surgeries are very scary and stressful for me.  Its hard to watch my baby be prepped and prepared to endure so much.  He is so little and I want to protect him from harm.  He has already been through so much.  No surgery is a huge blessing to not have to endure.  The doctors were definitely shocked by this news.  After preparing so much, they found themselves asking the eye doctor...are you sure?!  The eye doctor was pretty confident in his decision though.

So whats next?  Well, if Monday shows that Jordan does not need surgery right away or even at all, then there is nothing that is really keeping him from coming home.  That's right...you read that correctly...I said the H word!!  :D  WHEN Monday's check goes smoothly, we will then work toward discharge.  Jordan will be coming home on oxygen.  They will order the oxygen equipment and teach us how to use it.  Jordan will have a "carseat trial" test.  Then I will "room in" for one night at the hospital.  This means I get to do all of his care for the night and day without being bothered unless there is an emergency or I feel like I need assistance.  Once we "room in" we are good to go home.  Oh gosh!! I can't believe we are that close.

Lord I thank you for the miracle of life that you have given us.  Jordan is a precious little boy and we are so blessed to be his parents.  We are so thankful that you have given him the opportunity for life.  Already he has touched the lives of many. We praise you for this miracle that you have given us.  We praise you that healing has been seen in his eye.  We are amazed of your power.  I pray that you would heal his eye completely and give him full and perfect sight.  Allow him to shock the eye doctor on Monday with his progress.  Allow us to move toward the next step of bringing him home.  Lord I thank you for my wonderful family.  I have a wonderful husband, two precious boys, and a special little puppy.  How could I be anymore blessed?!  I thank you Lord.  I ask that you would use our family to be a witness for you Lord.  Lead us where you would have us go and serve.  We are here, send us to do your will.  I ask these things in your name, Amen. 

Holidays, Family, and Travel Plans

We have been quite the busy family the past week.  It seems like the crazy may never end.  We hope that things will settle down shortly but we shall see what God has in store.  Last time I blogged we were getting reacquainted with America.  We are still working on that part but we have a little more of an idea of what we are doing day to day.  We bought a car last week and turned in the rental! Wooohooo! It is so nice to have our own "wheels".  Its a 2006 Kia Sorento.  We wanted something that was practical for the whole family and this fit in our budget plan.  We are still staying at a hotel but we have a contract on a house.  We are hoping to close and move in before Christmas.  The inspection found an allergenic type of mold in the attic so we are currently waiting for the seller to report that it has been professionally cleaned and guaranteed as not harmful.  Finding the mold caused a little bit of a set back in the closing dates but we are starting to learn that God had that planned all along.  Late next week we should be heading to Michigan for Jordan's eye surgery.  Looks like we should come back just in time to close!  Gods plans are perfect!

Besides getting settled, we had a few(okay a lot of) visitors.  My family all came in last weekend to spend the holiday week with us.  Although I didn't get too many cuddles with my boy this week as they were all hogging him, I enjoyed very much being able to share my precious boy with the family.  Jason also had a blast with them here.  He thought it was so much fun to wrestle with grandpa and have the other kids (uncles) around to hang out with.  We spent a lot of time laughing, playing games, and enjoying each others' company.  Not to mention we had an AMAZING Thanksgiving meal! YUM!! I love food.  The only thing that could have made it better would have been to have Jordan home with all of us. 

Jordan gave us a bit of a scare at the end of last week.  During recovery from his hernia surgery he had two different "episodes".  The day after surgery he had an eye exam.  During the exam he stopped breathing and needed to be bagged to raise his oxygen levels and heart rate.  The next day he was given a pain medication and had an adverse reaction to the medication.  He stopped breathing and had to be bagged again.  I was present for both episodes.  It was very scary.  Later it was decided that the pain medication was the cause of both episodes.  He will not be receiving this medication anymore.  Since then his recovery has been pretty smooth. His intestines were swollen from being handled but after a couple days of bowel rest he started working back up to regular feeds.  He is once again on a very low setting of oxygen and is back on full on-demand feeds.  Praise God for getting us through those episodes.  We were reminded of God's power and strength. 

Next week we will be heading to Royal Oaks, Michigan.  Jordan will be getting at least one eye surgery and possibly two.  We are going to be flying on a medical flight again.  The reason we are being sent to Michigan is because the type of surgery that Jordan needs is only done at this one location in the country.  These eye doctors are the best of the best.  They are the leading doctors in pediatric eye surgery.  The procedure they will do is unique in that they will be taking blood from both Jacob and myself and then spinning it to separate the plasma.   They will be injecting the plasma from our blood into his eye as they re-seal the retina.  This provides advanced results in healing the eye.  I thought this was pretty cool.  If anyone knows anyone in Michigan let us know.  I heard its cold there :/ lol.  If all goes well with his surgery then he has two options.  He can either be discharged from the NICU in Michigan and we will fly commercial back to Seattle; or he can fly medically back to Seattle and be discharged from here.  We will cross that path when we get there.  One step at a time.  It is hard to believe that it has almost been six months since our journey began.  Our precious miracle boy.  Born at 12.3 oz and 9in long.  He is now 6lbs 8oz and 18in long.  Praise God.  What a miracle!!

Tomorrow we are going to try out a new church.  We pray for Gods direction.  

I ask that you keep us in your prayers as we prepare for this last leg of our NICU journey.  We are all anxious to start the next leg with us all home together.  I ask that you pray for:
1. Safe travels to and from Michigan
2. Safe and successful eye surgery
3. Fast and uneventful recovery
4. A smooth closing process on our home
5. That God would lead us in our hunt for a new church family.

We are so blessed to have so many friends and family that care for and love us.  We are even more blessed to be surrounded by God's family.  We hope you all had a great holiday.

Getting re-acquainted with America

Well so far we have had quite the adventure in America.  I have now rented my first car, set up our hotel room as "home", and have even started getting used to driving on the right side of the road.  We have been working on changing our schedules and just getting settled into life here in Washington.  On Wednesday I picked up Jacob and Jason and Lucy from the airport.  It was great to see them!  Jacob says that both Jason and Lucy did excellent on the flight.  I knew my kids were awesome! Everyone was very tired though so I took them straight to our hotel room so they could nap.  If you know how hard my husband is to wake up then you know that I regretted that decision later.  He just would not get out of bed...I finally kicked him out at about 5pm local time.  Then we headed out to the hospital so that Jason could meet his little brother in person for the first time! What a blessing! Jason just adored Jordan and he loved meeting him. He asked if he could touch his head and give him hugs and kisses.  He even helped Jacob hold him.  It was precious to watch my two little boys mingle.  I am looking forward to when they can play together.  My boys are the best! Im serious! ;)

So we are realizing a lot of different changes from America to Japan.  I mean we always knew about these changes but its different when you are living them.  First off, not everyone in America are as friendly as they are in Japan.  That makes me a little sad.  We really gotta work on that.  Especially as Christians.  We should be spreading love.  Also, I have seen quite a few homeless people so far.  I know this is something that happens in Japan also but you don't really see it where we were.  The portion sizes here are HUGE!! Jacob and I were shocked when we went to Olive Garden tonight.  We had to get to-go boxes.  It was super yummy though.  When we finished our sodas and they wanted to bring us a second we were like what?! LOL  Some of the best changes include us being able to understand what is going on anywhere we go because we speak the language.  We could have done better about learning Japanese though. 

One of the best changes is that I get to see my little man so often.  He is 10 minutes away and they are open for visitation 24/7.  This means that if I want to see him in the middle of the night then I can get up and go.  They don't recommend that you sleep there...but you can...haha.  I love being able to cuddle with him more.  All of the nurses so far have been amazed by the treatment and care that he has gotten.  Yes there are parts of his care that are different from Japan to America but look at how much he has accomplished.  He is continuing to amaze others with his success.

A couple of things going on with Jordan.  He is doing well for the most part.  His respiratory condition is pretty much the same.  He is just on a low level of oxygen.  They will try to wean him off of it eventually but he still needs it.  One of his biggest things that he has been working on is his feedings.  He needs to be able to take all of his feedings by mouth.  I have been practicing a chin support technique that allows him to get a better suction on the bottle.  Today he drank all of his feedings by mouth.  He is still having some episodes with his feedings though.  Occasionally his heart rate will drop if he gets tired.  When that happens we just take a break and then move on when he is better.  From what I understand, this is just something he has to grow out of.  He will also need to have his hernia surgery before discharge.  It has not been scheduled yet and I don't have a tentative discharge date or anything.  We are still just waiting to see what the future holds.  His head ultrasound came back normal and all of his labs came back normal.  They are tracking his thyroid.  One of his thyroid hormone levels is a little high.  He may or may not need treatment for that.  As of now its not high enough. 

Today I spoke with Jordan's eye doctor.  Jordan has a partially detached retina in one eye.  They call it a 4A detachment.  It is located in a spot that would affect his peripheral vision.  The eye doctor is working with other specialists to decide the best path of treatment.  This is the biggest prayer request right now.  If they decide to do treatment, he will need to be sent to Michigan for the eye surgery.  When that will happen or if it will happen is still undecided.  Of course this was not in our plans at all but we do want the best of the best doctors working on him and those doctors are in Michigan.  We should know more as the week progresses.

Saturday we get to go look at our housing listings.  We are so excited to become home owners!! Jacob signed in to work today.  He is really excited about working at a heavy's base.  He thinks that he will be able to get some of his schooling done while we are here.  He is really looking forward to having more available time for that.  I am looking forward to having more time together as well.  I am so ready to bring my sweet boy home.  I know that it is all in God's timing.  These delays could just mean that Jordan needs to touch other lives for Christ.  Lord I just ask that you give us the strength to keep fighting every day for Jordan's best interests.  Help us to be observant and committed. We ask that you would protect him, heal him, and use him.  Help us to be a light for your word.  Amen.

We made it to America!!

Wooohooooo!!!  Jordan and I safely made it to America.  Let me tell you, that was an experience.  So after several flight time and day changes and unchanges (changing back to beginning plan lol), we ended up loading in an ambulance, waving goodbye to our Japanese NICU staff, and heading to Misawa to load up on a KC-135.  It was hard to leave the Aomori hospital.  Such great staff.  We are so blessed that we were able to work with such awesome people.  They really did become family.  We took tons of pictures and got many cards and gifts.  They really do love our son...and for that we are beyond grateful.  I really hope Jordan can go back to Japan someday to see where his life began. 

We had a really nice transport team for his flight and everyone did their best to make sure both him and I were comfortable and taken care of.  If you have never been on a military flight, it is quite the experience.  So its not climate controlled like a commercial flight.  They have heat on but heat rises so most of the flight my face was hot and my feet were cold.  It is also not made for comfort but it really was not that bad at all.  I was impressed with the smooth ride.  It also helped that I had my little munchkin to keep me occupied.  They opened his flight up for a few space A seats and one family from our church was able to be on the flight.  That was such a blessing to have people I knew on the flight.  I was so thankful that God worked it out like that. 

Jordan did awesome of the flight.  He had to be in the incubator to control the climate and for safety but he was pretty comfy.  He kept his levels stable and even got to wear cute little ear plugs.  Once we arrived in Washington, the medical team started to get him settled in his new home.  They did a lot of transferring of paperwork and medical summaries.  He will need to go through all of the testing again so that they can get a baseline of where he is at physically as far as his development and needs.  Although his medical records were transferred with him, they were in Japanese.  They had a few translated summaries and notes so they are basically working on piecing everything together.

It is now that we start to learn the impacts of the communication barrier.  I learned a lot of cool tricks for feeding him and caring for him.  He definitely got pampered by the nurses in Japan.  Today I have a little bit of an update on Jordan.  First off he has an inguinal hernia.  I did not know this before so it caught me off guard a little.  This is a common ailment of premature male babies and he will need to have it repaired with surgery sometime before he is one.  It is not a major operation and is not causing him any pain it is just there and needs to be fixed.  The doctors also made it a top priority to check his eyes.  The Japanese standards are different than the American ones so the doctors just wanted to make sure they were all on the same page.  His ROP has regressed a lot and is no longer dangerous.  There is a small part of his retina in one eye that is detaching.  Since this is the first time they have looked at his eyes here, they did not know if this was something that was worse before and now getting better or if it is something that is starting to get bad now.  They will recheck him on Thursday to get a stepping stone to work with.  Jordan is also doing really well with his feedings.  So much that they took the feeding tube out and use a resistance technique to help him get better suction on the bottle.  He is so far drinking all his feeds on his own.  Im going to have to practice at the resistance feeding thing....the nurse was great at it though.  Practice makes perfect I suppose. 

Jacobs flight actually got delayed 24 hours so I had to change a bunch of stuff around with plans.  Please pray that things go smoothly for me as I work on getting us settled and then pray for a safe flight for my guys and lucy girl.  So I am definitely exhausted and looking forward to my pillow...again (I took a nap!).  Oh and please pray that I remember that they drive on the RIGHT side of the road here...eeekkkk. 

Thank you for your prayers and support.  Don't we serve and awesome God?  I have been so blessed by how God has everything worked out for me already.  He has things under control.  He knows what is going on and has it planned to perfection.  So blessed! :)

4 months & 3weeks old (4 weeks corrected)

I can't believe that it has been over a month since my last blog post.  Wow!  Where did the time go?!  I seem to have let life catch up with me.  My goal is definitely to become more active with my blog and to share how God has changed our lives and is still changing our lives with our two precious little boys.  My goal is to blog at least twice per week.  If you are reading our story for the first time, I would like to give you a little summary.  My husband and I have two precious boys.  We are a military family that is stationed overseas in Japan.  Our first son is an active 2.5 year old cutie.  He is so full of energy and enthusiasm.  He brings us so much joy, laughter, and love.  He is perfect in every way and we praise God that we get to be his parents.  When I was pregnant with our second son, I developed severe HELLP disease.  This is a serious condition that includes high blood pressure, elevated liver proteins, and low blood platelets. My condition was so serious that I needed to deliver my baby immediately or risk dying.  I was only 23 weeks and 3 days pregnant.  Our son was born by emergency C-section weighing only 12.3 oz.  Yes OUNCES.  Less than a pound at birth.  He has amazed all the doctors by his success.  His life is really a miracle and we have been so blessed.  It is beyond amazing to have a front row seat at God working here on earth.  We have been forever changed.

The last time I blogged, Jordan had just been moved to an open crib with a warmer on  top instead of the incubator.  He was dealing with ROP in his eyes and had been battling back and forth with infections.  He was also on CPAP for his respiratory condition.  He has made big changes since that step.  Jordan is now almost 5 lbs.  We expect him to reach that weight within a week or two at the most.  The ROP that was in his eyes has been healed without treatment.  In ROP, the blood vessels in the eyes grow too quickly and end up wiggled rather than straight like normal.  Jordan's blood vessels have straightened out and he no longer has ROP in either eye.  Jordan is now in a regular bassinet with no warmer on top.  He keeps his own temperature stable now.  He is also no longer on CPAP.  He is now just on oxygen for respiratory assistance.  He has a very low setting of oxygen being supplied.  The dr recently tried a trial run with no oxygen but he failed the attempt so they will try again in a few weeks.  These are big progressive steps.

Besides those huge improvements, we have also received more great news with his condition.  He had his hearing checked and passed with flying colors.  He also went through and MRI to check brain development and activity.  There was no sign of any developmental problems with his brain because of his prematurity.  Everything was normal and comparative to healthy full-term infants.  What a huge blessing.  God has big plans for our little boy!  We still drive up the NICU 4 times per week to cuddle and love on our sweet little boy.  He is now drinking from a bottle and finishing his milk most of the time.  He still has a feeding tube for those times when he is too sleepy to finish his bottle.  We are still trying breastfeeding even though it doesn't seem to be working out so well.  He likes the bottle better.  I am still pumping for him.  We are hoping that he will be able to come home shortly after we move.  We are ready to bring him home so we can love on him all the time.  We are hopefully moving in one week.  I say hopefully because there were some kinks in our travel plans that haven't been corrected yet.  The military hospital here does not have the medical abilities to care for him so they are transferring us to the states.  We are going to Washington state and are really excited.  We have been busy preparing for the move.

Jason is doing great.  He was able to meet his little brother through the window.  The Japanese hospital system is much more strict than the American system and not many people are allowed in the NICU to visit babies.  When we get to the states Jason will be able to actually touch Jordan for the first time.  I am so looking forward to watching my boys bond as brothers.  Jason is still working on Potty training.  I feel like he would be done by now if we were making it a priority but with being so busy we have not been as consistent with it as we should have.  Once we get settled at our new base I plan to do a "no more diapers" stage with full time potty training going on.  Jason has done really well with all the crazy things we go through.  I am very proud of him and amazed at the little big boy he is becoming.  He has so much energy.  Sometimes we literally have to sit on him to get his clothes changed.  If I had that energy I could do so much!

Although we are excited to move on we are also sad to leave our "family" here in Japan behind.  Those people that have been right by our side from the very beginning just loving and supporting us have been a true blessing to us.  They loved us and stood beside us when our world fell apart.  They cried with us, laughed with us, prayed with us, and loved us.  We have been surrounded by God's love and the love of His people.  God had provided for us every step of the way.  We have learned to rely on God for even the smallest details of life and to cast all of our burdens on Him.  His way is the best way.  He has the best plans and has laid them out for us to live fully in Him and to bless Him with our testimony.  I love this time of year the most because I am reminded of just how awesome God is each time I look at the colors of the leaves and the beautiful changing colors.  It is so beautiful and majestic.  What a mighty God we serve! As we continue on our journey we ask that you would pray for us.  Pray that we would seek God at all times and raise our children to know and love Him.  That we would use our testimony to reach others for Christ.  God heals the broken and strengthens the weak. He is the only one that can make our burdens light.  And He is the only one who can save us for eternity.

100 days old!!!! 9-16-12

Today is a big day for Jordan…He is 100 days old ONE HUNDRED!!!  Seriously though the only reason I know that is because I have to list how many days old he is on my pumping log.  But what a little blessing he is!  He has survived against all odds and is doing great and moving in the right direction.  We are so impressed with him and with Gods power to sustain him.  I really did not imagine that my life would turn out like this but I am so amazed at watching God work.  My plans for my life were not even close to Gods plans.  And guess what? Gods plans are way better anyway! 

We have been pretty busy the last few weeks.  This past Monday Jordan was transferred to an open bassinet rather than the incubator.  We spend a lot more time at the NICU now.  It is hard to walk away and be without him.  He is able to interact with us so much more and we are able to connect with him.  I know this sounds crazy but it is actually starting to feel like he is a real baby.  Of course he has always been a real baby but the levels of connection that we are now getting is the best!  It is so awesome to be able to cuddle him every day and to love on him.  He makes those cute little baby faces that everyone loves! You seriously just want to stare at him for hours.  Especially while he is cuddled in your arms and making all those very cute new baby noises!!  I seriously just want to share him with the world but I can’t.  He has to stay in that room for awhile yet.  I can only imagine how spoiled this little boy is going to be in the future.  I mean Jason is really spoiled and he was full term.  I love my little boys so much.  They make my heart full and happy.  Beyond full and happy.  Like overflowing!

Jordan’s issues the past few weeks are with his eyes and his weight gain.  He is has been diagnosed with Stage two ROP in his left eye and stage three mild ROP in his right eye.  They do not need to operate at this time but if it gets any worse then they will need to.  It is as good thing that they don’t need to operate because since he is still on the CPAP, he would have to go back on the ventilator for them to do the eye surgery.  This is because he would need to be sedated.  In other words, it would be like taking a few steps back rather than forward.  They will do this if it is necessary for his eyesight but right now it is now.  He still has his eyes checked twice per week to make sure things are stable and not progressing further. 

Jordan is currently on CPAP.  He has recently moved to full CPAP mode.  Before he was getting occasional mandatory breaths through the CPAP machine because he would tire easily with trying to breathe on his own.  He is doing really well now with breathing on his own.  His lung damage is severe.  He was on the ventilator for such a long time.  But his lungs can and are healing themselves.  How amazing are our bodies that they regenerate cells to repair organs.  God’s creation really is awesome.  Anyways, his lungs are healing but he needs to grow so that they can heal more quickly.  As his lungs heal he will be able to take deeper breaths and will tire less often.  His breathing has become pretty strong in the last week and he is able to stay on just the CPAP setting most of the time.  His oxygen is down to about 26-28% concentration.  Room air is 21% so this is fantastic news.  Drs are hoping that when he is able to come off of CPAP then he will not need any oxygen support. 

The main concern right now is Jordan’s lack of growth and weight gain.  He has been gaining and then losing in a cycled pattern.  He needs to be gaining steadily and evenly.  There are a few reasons as to why he isn’t gaining.  One, he is working harder to breathe on his own and his body has been fighting infections and inflammation.  All of this takes energy so he may be burning all his calories.  Two, he has been on antibiotics for awhile because of all his infections and this can cause his body to not absorb the calories and nutrients as well as it should.  We just specifically ask that you would pray over this issue and ask God to work in Jordan’s life.  Weight gain is an all around benefit for Jordan and necessary for his health.  The doctors have added a supplement to my milk to give it more calories.  They are also giving him really large feedings.  He is getting 33 ml eight times per day and this is considered a big portion for his size.  I also think that it could partly be because he may have inherited his daddy’s metabolism.  Jason and Jacob both have really fast metabolisms and eat a lot!  I am looking forward to when we can begin breast feeding because then Jordan can eat until he is satisfied rather than just eat based on statistics.  This week we are going to try to get him to latch on.  I am really nervous about this but excited as well.  We can’t let him try to drink the milk by mouth until he is off of the CPAP but we can let him practice.  The CPAP is a constant flow of pressure that is opening up his airways. If he were to try to swallow he could choke.  So it is best to wait. 

The doctors have pushed our transfer back a few weeks so that Jordan’s lungs can have extra time to prepare for the flight.  We are confident that he is receiving great care where we are and we know that God has it all planned out and these changes were necessary.  Jacob has been busy doing a lot of paperwork for his orders.  There was a confusion last week where he had new orders to a different place but those were taken care of quickly.  We are still heading to McChord.  We are really excited for our new adventure but we know that God’s timing is perfect and we will get there when we need to.  We are working with the exceptional family member program faculty to get things set up as much as possible to make it a smooth transition.  We are still hoping to be there in time for thanksgiving! It really all depends on Jordan and his progress so far.

Jason is doing great.  He has such an imagination and he is becoming so good at communication.  It is really enjoyable to be able to have big conversations with him.  It is also really adorable to watch him have conversations with his little friends.  I love little people! This is why I want to teach.  Kids are simply amazing and I have such a big heart for them.  Jason’s potty training is going pretty well.  I think that if we were more consistent with it then he would have it down perfect by now but with our schedules we tend to forget.  He goes on the potty pretty much every time we ask him to.  Now we just need to work on him only going in the potty and telling us that he needs to go.  Step one is good now on to step two.  He will get there.  I just know it! We are not in a rush either so that helps.  We also have some amazing babysitters that are so willing to help us out with his potty training.  What a blessing the Wark family has been to us.  I cannot express how beyond grateful we are that they care for and love on our boy many times per week.  We are going to miss them as well as our other great friends when we leave. 

Jacob and I are doing well.  We get frustrated sometimes and have our moments of “That’s just not fair!” LOL but for the most part things are going smoothly.  We are really amazed by Gods miracles and the work He is doing in our family.  We have been able to spend a lot of time together that would not have been possible without our current situation.  I really love how much closer we have grown.  All the mommies that were due around the same time as I was are now starting to give birth.  It is sometimes hard because I know that I should still be pregnant.  This is where the “its not fair” moments come in.  All the babies are so cute though and I praise God that those babies are healthy.  Every new life is a miracle and a blessing.  We just had the opportunity to watch our baby develop on the outside of the womb and we are forever changed and forever better.  My heart is full and my cup overflows.  Gods blessings are truly great. 

Pictures!!

I will write a new blog post tomorrow about all the wonderful and crazy things that are going on in our lives.  For now, here are some pictures of my sweet boys and family! I am blessed beyond measure to have these awesome guys in my life! My cup runneth over!

9-7-12 Three months old...tomorrow! ;)

Jordan is THREE months old tomorrow! Oh my goodness.  I can’t believe how far he has come.  It has been such a journey and such a blessing to spend this time with our little miracle boy!  What a mighty God we serve.  Jordan now weighs about 2lbs 12 oz.  He has been having a few issues.  His weight seems to be fluctuating.  At first he wasn’t gaining weight.  The doctors explained that they though he was using up too many calories for breathing that he wasn’t putting on the weight like he should.  So they raised the support level on his CPAP so that breathing would be easy for him.  He started showing weight gain again after that but today he lost about an ounce.  The doctor said not to worry about it though. Much easier said than done of course.  It is a good think that Jacob and I have been giving all of our worries to God because I think we might be crazy by now if we didn’t.  Jordan needs to gain weight steadily so that his lungs can heal.  The goal is to have him off of CPAP and breathing on his own by about 40-42 weeks gestation.  So about 4-5 ish weeks.  He needs to gain.  Grow baby boy!!

Jordan’s eyes are one of the main concerns right now.  They are checking his eyes twice per week for ROP.  His left eye seems to be developing almost normally.  He has ROP in his left eye but it is not progressing at all and is stable at a very mild level.  His right eye has been diagnosed as stage 3 mild ROP.  Basically there are extra blood vessels growing in his eye that aren’t supposed to be there.  This is normal for premature babies because their bodies try to develop quickly outside the womb.  Right now he does not need surgery or photo therapy treatment but it is a possibility for his future.  We are praying that the progression of the ROP would stop and stabilize so that Jordan can have full sight.  We also pray for the doctor’s wisdom to be able to make the decisions necessary at the correct time.

Jordan may have another infection but right now we are unsure.  His CRP was 1.7 today after they stopped the antibiotics yesterday.  This is not extremely high but it shows that his body is fighting something.  It could be just irritation.  The doctors will observe and take cultures to watch this.  The good news is with his platelets.  Today the number was 6.8.  Yesterday it was 3.2.  This is great news because with such a high jump in numbers, it means his body is now making platelets regularly again.  Hooray!!  We were getting worried there for a bit with those daily transfusions he was getting. 

Jordan and I cuddled for almost two hours today.  He is such a sweetheart and he snoozed pretty much the whole time.  He snores kinda…haha.  It’s SO adorable!!  He looks a lot like his daddy when he sleeps!  He kept kicking me and wiggling around to get comfy but once he found his spot he was good to go! His oxygen saturation was 99% for a lot of the time we were cuddling he was just very content! And so was I! I love his cuddles.  You know, part of me is still really afraid to handle him because he is so fragile and tiny…but these cuddles have been a huge blessing.  We finally feel like we can do something to contribute to his care…..we can love on him! :D

We were supposed to have a meeting today to discuss Jordan’s transfer and make decisions about his flight but it was cancelled.  The NICU had a brand new baby born today and the doctors needed to focus on giving that baby the best care possible.  We were there doing kangaroo care when they brought the baby in.  He/She was HUGE…haha…well like maybe 4lbs….but that seems HUGE to me right now!  It was great to see all those doctors working hard and taking every precaution to give this baby the best care!  I pray that baby is very healthy.

I have been thinking a lot about Jordan coming home and I am so excited and so nervous all at the same time.  Mind you we still have at least two more months before that will happen but we want him to be with us!  It’s really a strange thing to have your baby but not have your baby.   It is really frightening when his heart rate slows down or his saturation gets low.  I am going to be really nervous to take him home!  It is hard to think that I would be 36 weeks pregnant right now if my body had agreed with pregnancy.  I am so thankful for the time we have had with Jordan though.  It has been a blessing to watch God’s creation on the outside.  I find it amazing to see his power!  I have grown a lot through this experience and I know that God is using me for great things. 

Jason is doing well.  He is such a goofball.  We just love him to pieces.  He makes us laugh so much!  He is starting to get more defiant though…hmmm I wonder where he got that from…..maybe his mother…hah!  He will stare directly into my eyes with that ornery smile as I tell him not to do something and he will do it anyway.  Such a two year old!!  Today on our way home he told me all about his day! It was so great! I love having conversations with this little boy! He is so smart and so big.  I love that he tells me “Tanks mamma” for everything! It just melts my heart! He is doing so good with potty training.  Step one is accomplished.  When we put him on the potty and tell him to pee he does it! Wooohoooo!!!  He gets so excited too.  And we of course throw a party in the bathroom.  Now we need to work on step two where he will tell us he needs to go rather than just going in his diaper if we forget to take him or don’t ask him soon enough.  Any potty training tips you wanna share?

We have been doing a lot to prepare for moving.  Lots of organizing, researching, and dreaming going on here! We have a lot to consider and think about.  We want to make sure we have a plan set up so that things can go smoothly.  Jacob and I will have to fly separately.  I will fly on the medical transport with Jordan and then Jacob will fly on a commercial flight with Jason and Lucy.  Lucy cannot fly on the medical transport so that’s why we had to do separate flights.  One of the guys working on our paperwork told Jacob that it might just be easier to get rid of the dog…hah…rude! Of course Jacob told him that was not an option.  Lucy is part of our family too.  There is no way we are moving without her!  Luckily its just one straight through flight right to Seattle!  Pray for Jacob ! LOL

Jacob and I were reading in our devotions today about how God uses the trials in our lives to refine us into Gold.  HE has great plans for our lives and He is molding us and shaping us how He wants us for His perfect will.  This journey is not meant to bring us harm and heartache but to prepare us for our purpose.  God is using us and we are growing.  We want to be big green trees with lots of great fruit! God also has this desire for us and will prepare us.  What a mighty God we serve.

Lord I pray that you would continue to guide our family.  You have made it very clear as to the path you would like us to follow with this journey.  You have guided us each step and we trust that you will continue to guide and lead us to where you want us.  I praise your name for my two beautiful boys.  Lord you know the needs of Jordan right now and I pray that you would fulfill those needs and breathe health and strength into his body.  Perform your miracles and heal his eyes.  Allow his body to grow and thrive. Create in him a pure heart to serve you and guide others to you.  I pray that you would be with Jason and his potty training.  Allow him to start taking control and make that transition.  I praise you that he is doing so well with it right now.  Give us the patience to keep plugging away and cheering him on toward this goal.  Lord I ask that you would be with our move and the decisions that we have to make.  Allow us to make wise decisions that will benefit our family.  Help us to allow you to lead.  Show us where you want us to live, serve, and grow.  Lord I pray for Jacob and that you would give him the skills he needs to lead our family.  He is the leader of our home and I pray that you would help him to seek after your direction each step of the way.  I thank you for making him into the husband and father that he is.  Teach us and help us to grow in you together.  Thank you for your blessings and the beauties of your creation.  We love you lord.  Amen

12 weeks old!! 8-30-12

I am very sorry that it has taken me an entire week to blog again.  I have been so busy.  I promise to work harder at blogging more often in the future.  Bear with me as my life is pretty crazy.  It’s a good thing that God is at the steering wheel!   This has been a big week for our family.  We have grown in many ways.  It is amazing how God directs life.  We sometimes do not understand why things have happened but God has a plan for each one of us.  Romans 8:28 says, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”  This is such a great promise and reminder!  Everything happens for a reason.  Everything happens for God’s reason.

This week Jacob and I started doing a couples devotion.  In Delaware, our Sunday school teacher stressed the importance of growing together in God.  He used the analogy of a triangle.  God is the point of the triangle and the husband and wife are the points at the base.  As the couple grows closer to God, they move up the lines of the triangle to reach Him.  If they move closer to God together, they also move closer to each other.  If one moves closer to God, he or she moves farther away from his or her spouse.  We decided that it was way past time for us to grow in God together.  Anyways, we have been learning so much with this devotional time.  I encourage you to do devotions with your spouse or significant other! You will reap the benefits!     We are able to support each other, keep the other accountable, and grow in godly love.  God is doing great things.

Jordan has been doing pretty well this week.  We have been praying through his issues and we have seen some improvements and answers.  He has had a few bumps in the road though.  Last Friday was our first day of Kangaroo care.  We were so excited for this moment!  Jordan had a rough time with the transition from the incubator to my chest.  His oxygen saturation levels were all over the place.  We were actually able to hear him cry for the very first time.  Once he was settled and all tubes were once again connected he did great.  He enjoyed his time and his alarms actually went off because his oxygen levels were too high.  It was such an amazing experience to finally be able to bond and cuddle with this sweet boy!  He is still very little and it feels like I am once again a brand new parent.  He just feels so fragile.  His looks are deceiving though! He has the strength of God coursing through him!  What a mighty God we serve.

On Monday, it was Jacob’s turn to have some bonding time.  Jordan had a much more smooth transition from incubator to daddy.  Things went very well for the first 30 minutes of their cuddle time.  They had to place drops in Jordan’s eyes during the cuddle time since he was going to have an eye exam after we left.  About ten minutes after they did the drops in his eyes Jordan gave us all a heart attack.  For some reason he decided to stop breathing.  His oxygen saturation went down to 8% and his heart rate went down to 58bpm.  Here he is cuddling on daddy’s chest with all the drs and nurses trying to get him to breathe again.  What a frightening experience.  What lasted only about 60 seconds seemed like a lifetime.  It made me very thankful that Jordan is in a place where he can receive the necessary quality of care.  All I could do was stand there and pray “Please God help him breathe NOW!!”  The doctor explained two reasons as to why that can happen.  Sometimes babies have a reaction to the drops because they do not like how it affects their eyes.  This can cause them to stress and affect their breathing.  The other reason was that Jordan was maybe just too comfortable on daddy that he forgot to breathe.  The dr showed us some techniques to ensure that we are engaging him and stimulating him during our kangaroo time so that he still has to actively think about breathing.  I pray that we never have to experience that again.

On Wednesday our cuddle time was perfect!!  Thank goodness we finally were able to have a great session.  He didn’t have any problems during the transfer and kept his oxygen levels stable the entire time.  He made cute little baby noises for me and seemed to just be really comforted by our cuddle time!  I was able to cuddle with him for about an hour and a half!!  Such a great way to bond with my boy.  Jacob gets to try the cuddling again tomorrow.  I pray that things will go just as well for him.

Jordan has a few things going on with his health.  His ROP moved up to getting checked twice per week because they noticed that it was getting a little worse.  His current eye status shows that his ROP is still very mild and he does not need treatment at this time.  They will continue to monitor him twice per week to make sure it does not progress negatively.  Jordan has another infection but it is mild.  The culture shows the same bacteria that he had about a month ago, pseudomonas.  The antibiotics seem to be clearing it up rapidly and it doesn’t seem to be causing issues in his body.  Jordan went from a high level of breathing support with the ventilator to a low level of support with the CPAP.  Since he has been off of the ventilator he has only gained one ounce.  He should have gained half a pound or more.  The doctor thinks that this is because he is working very hard to keep his oxygen saturation up and he is burning too many calories.  They are treating him by raising the support on the CPAP.  It still occasionally gives him a mandatory breath through the nose mask so that his breathing can be comfortable and he can use more energy for gaining.  We need him to gain weight in order to heal the CLD (Chronic Lung Disease) in his lungs.  They can repair themselves but they need to grow.  Please keep this in your prayers.

Jason has finally been showing an interest in potty training! Hooray!!  I have been waiting for him to show me when he is ready because it’s not like I really have a bunch of extra time on my hands.  Lol.  For the past two days he has peed in the potty several times!  He doesn’t have a dry diaper yet though and he doesn’t usually tell me until after he goes but progress is progress.  He gets SO excited when he actually does go.  I think he really enjoys the praise! I love to watch him copy the godly examples that we set for him.  If one of us is doing devotions then Jason goes and grabs his bible and pretends to read from it.  The other day I looked up from my prayer after I had finished my devotion and Jason was sitting in his booster chair with his hands folded and his head bowed.  What a precious little boy! I pray that we can be great examples to him and lead him to Christ as it is our duty as his parents.

We received our assignment this week.  We will be heading to Seattle, Washington.  We are really excited about this but we were not expecting it at all!!  Now we can begin planning and preparing.  The base is connected to the army base and they have a great medical hospital that provides all of Jordan’s future needs.  I am looking forward to spending more time with Jordan.  This should be a smooth transition with only one direct flight.  We are going to need to buy cars when we get there and find housing.  We have been researching away since we found out and we know that God will work everything together perfectly.  He has the perfect house, vehicles, church, and situations for our specific needs according to his plans.  It really is amazing how much less stress you have when you let God handle it all.  My burdens are light!

The only thing that seems to be not working out so great at the moment is that I have to quit school in the middle of my program and pray that my credits will transfer to a new school.  I have been going through University of Phoenix for my teacher certification program but Washington State does not accept my program for licensure.  Transferring to another school is my only option to continue.  Pray that God would make this transition smooth and allow me to finish my program without too many wasted classes.  I am looking forward to the break from school while I transfer though.  I think I need some rest to regain my excitement.  I haven’t been very motivated for school recently.  It is all in God’s hands.

Lord I thank you for this day and this week.  I thank you that we have received many answers to prayers this week.  We are so thankful for the 6 week notice of orders.  It is really nice to have the extra time rather than only 2 or 3 weeks.  I pray that you give us the motivation to accomplish everything we need to do and that you would guide the transition and direction of our lives.  Help us to allow you to lead us.  I thank you for sweet little Jordan.  I ask that you would help him to gain weight steadily and healthy.  I ask that you would heal his lungs and give him a complete recovery.  Allow him to have no lasting problems with his severe prematurity.  Allow him to be a testimony of your power and allow us to be the voice about the miracles you are working in his life.  I pray for Jason and his potty training endeavor.  I pray that you would give us patience and understanding.  Help Jason to work on his skills and become a wonderful big boy!  I thank you for the time I am able to spend with my husband in our devotions.  I am really enjoying spending the time growing in you with my partner in love.  I ask that you would give us the strength and wisdom that we need for each day.  Help us to follow wherever you lead.  Prepare for us the things we need in Washington and make our transition smooth.  I ask all these things in your name, Amen