The Julien brothers - matching swimming trunks

James was pretty excited to find matching swimming trunks for Luke and him!  And they have orange on them!  Both boys tried them on and they might have to be next year's trunks.

It is so sweet to watch James interact with his baby brother.  You can tell he is in love.  Sometimes he can hardly hold his emotions at bay.  He loves holding and rocking him, singing him silly songs, laying down next to him, and his favorite part, is rubbing Luke's spiky hair! He's such a wonderful brother!

Joshua 1:9

 "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go." - Joshua 1:9                                   

This is one of our favorite verses from GT and the Halo Express, and has been stuck in my head all day. As we navigate these uncertain times, I am constantly reminded that we are not alone. I definitely felt His presence today with me during my first day back at work.  I knew it was going to be emotional, but I also felt a sense of peace knowing that this would allow me to heal.  I had pre-warned my teammates that I would probably cry before and after school, but that I would keep it together for my students.  Seeing my wonderful co-workers and my amazing class of 6th graders was such a gift.  I am so fortunate to be able to teach part-time and also spend part of my week at home with my beautiful kiddos.  I was only able to go back this time around knowing that Luke and James were in such loving care.  Our daycare provider Susie is a blessing.  I know that she not only is good at what she does, but that she loves my children.  When I came to pick the boys up today, I walked in and little Luke look straight at me. It's all I needed to make my day complete. :)

Right now we are in the process of trying to find a good family counselor.  We got a couple recommendations and are always open for suggestions.  We would love to find a Christian counselor who specializes in children with disabilities.  Also, our pediatrician called tonight, and she put in a referral to start PT down at Children's in Minnetonka.  It feels hopeful to start moving forward.

Again, thank you everyone for your thoughts and prayers! We continue to feel God's loving arms around us.  We know that he purposely placed little Luke in our lives, and we are thankful that he entrusted us, Stefan and Betsy, to be his parents.  Don't get me wrong, it's still really hard, really sad, and feels really discouraging at times!  But we place our full trust and our hearts in our heavenly Father knowing that he has a greater plan for our life, and that plan is better than we could ever imagine.  As long as we continue to trust, live for today and cast our worries to him.

Lots of love! The MN Juliens 

Home sweet home

Even though home feels like a safe place, Friday was a real low for Stefan and I emotionally.  We could tell our patience was short with Addie and James, we just wanted to be left alone, and I couldn't stop randomly crying.  I was explaining to Addie what was different about Luke's brain, and she just looked at the tears in my eyes, and with a soft voice said, "You mean he can't walk, or talk, or play with me?" I told her I didn't know and that only God knew how little Luke would grow and what he'd be able to do.  She decided to say a prayer, and here's what she said, "Dear God, I pray that Luke will one day be able to walk and play barbies with me and that he will be able to talk to me.  And God I pray that you make mommy stop crying."

At that moment, I knew that no matter what kind of pain Stefan and I were going through, Addie and James were going through the pain of watching their parents grieve.  It is okay to grieve, but I realized that we have two other very fragile children who all they wanted was to be loved, right now.  After everyone went to bed, Stefan and I talked, cried, and prayed for a long time together.  God revealed that we can still grieve, but that we need to spend time, just as a family, holding on to that sense of normal.

Saturday morning, we woke up and made muffins and had a fun filled morning of play time.  Undivided family attention.  Just what the doctor and God ordered. :)

Saturday afternoon our wonderful friends organized a lunch and playdate and just surrounded us with love.  They were there to simply listen, not to fix, or give advice, just to be there with us.  It is such a blessing to know that we get to do life with these friends.  They then sent us home with a ton of meals!  That night we got together with my side of the family for Mimi's birthday.  Again, so wonderful to be surrounded by love.

Stefan and I are continually amazed at how God has and is specifically placing certain people into our lives for a reason.  Every person we were in contact with the past 3 days was not only a Christian, but a strong one: our wonderful nurse, pediatrician, neurologist, speech pathologist, special education teacher, the deaf organization leader that came to our house, etc.  They not only comforted us, but were able to back up what we already knew.  God placed Luke into our lives on purpose, for a reason he chose our special family and through all of this He will be glorified.  We are so uncertain of our future, but cling to the hopes of today.  God commands us not to worry about the future, but to know that he is here, right now, walking right along side of us!

Thank you all for your prayers and thoughts.  We ask more than ever, that you surround our family with prayers.  I head back to work tomorrow and little Luke off to Susie's.  :) We prayed long and hard, and I know that teaching and having a sense of routine in our lives right now is a good thing.  Luke will be so well loved and stimulated.  I have such an amazing team at my school and know that they will be there for me and help my transition back to work go well.

Lots of love to all of you from balmy Minnesota!

Love, The MN Juliens

Luke's brain

This might be the most challenging blog entry to write. On one hand, to finally know what is wrong with Luke's little body is a huge relief.  But on the other hand, it comes with heartache.  We spoke with the neurologist this morning.  At this point, the lack of Luke's Corpus Callosum seems trivial.  The main concern is Luke's lower part of his brain is small and this empty space is filled with a large amount of fluid.  You can see the above scan, where the black is, is where brain matter is missing and the fluid has filled the void.

He said it is hard to predict what the future holds.  Luke will have delays.  In either specific areas or in all.  He said there will be a limit on how much he will be able to do. As far what he actually does, we will have to wait and see.  Again, we are back to that wait and see.

I've finally realized that I can no longer bargain with God. It isn't, "Please God don't give me anything more," or "Please let this be all," or "Please God let Luke's hearing loss be okay later on."  Instead, it is, "Luke is yours Father.  You are in complete control.  May your will be done. Thank you for him." 

Stefan and I are completely back into that first stage of grief.  We are saddened, by this change in our plans, and are really sad that Luke may not get to experience life like a normal kid.  Satan is at work, and I ask for your prayers that all his evil thoughts be banished from us. 

I know that our heavenly Father has a wonderful plan for our special family.  That he pre-selected Stefan and I to be Luke's parents, and that he chose wonderful siblings like Addie and James to do life along side Luke.

We ask that you continue to lift up our family with prayers.

Love,

The MN Juliens

Agensis of the Corpus Callosum

The MRI showed that Luke's Corpus Callosum never connected.  This is the part of the brain that connects the right side with the left side.  This diagnosis is a wait and see game.  There are some patients that never knew they had this until having an MRI later in life, and then on the opposite end, developmental delays. 

Even though we have answers now, the answer leaves us feeling very sad. Sad is putting it mildly.  We were distraught. The evil one kept putting all kinds of negative thoughts into our heads last night.  It's easy to go down that road, so instead we just kept praying all evening.  Asking God to give us peace, asking God to watch over little Luke, and most importantly, thanking Him for the blessing that our little one is to us. 

Luke is such a strong, tough little guy! We ask that you continue to lift our family up in your prayers.  At this point we are meeting with our neurologist soon, and then it's back home to just enjoy and watch Luke grow and develop.

With much love, The MN Juliens

Recovery

We are sitting in the recovery room right now.  He is quite uncomfortable and has a bit of a bark to his cough (due to being intubated).  He successful gobbled down a bunch of breast milk, but is currently squawking like he needs more.

The MRI results may possibly be done later on tonight.  The doctor on-call will keep us updated.  The anesthesiologist said nothing major showed up on the MRI, but they send it out to the radiologist to do a more in-depth analysis. 

Thank you everyone for your prayers.  Stefan is going home to be with Addie and James and I'm staying over w/ Luke tonight, as he needs to be monitored for 12 hours after sedation. 

Lots of love, The MN Juliens

Psalm 136

As I write this entry, Stefan and I are anxiously waiting in the family room down at Children's Hospital.  A nurse just came out to let us know that they just did his circumcision fix, and are now just starting his MRI.  It will take about an hour (which seems like an eternity on our end).

Pre-MRI.  He was not happy and VERY hungry. His last feeding was at 3:30am, and he didn't go under until 11:15am.  He'll be a hungry little man when he wakes up!

I went to read my devotional for the day, and it was "Give thanks to the Lord, for he is good.  His love endures forever." - Psalm 136.

God knows exactly what we needed to hear right now.  And that was, we need to praise him.  For who he is.  For sending his one and only Son, to save us and for allowing us to have the Holy Spirit.  Our Bible Study is studying the Holy Spirit right now.  On Sunday, our main topic was our prayers and how they should be praise filled, even before we God reveals the outcome.  Our God is good no matter what the outcome.  This morning, our dear Addie asked, "Mommy, what happens if God doesn't answer our prayers?"  I was able to share that God's plans are perfect, and even though it may be disappointing, he promises to love and always be with us, and that he works all things for the good of those who love him.

Stefan and I are able to praise God, right here, right now.  For the blessing that Luke is in our life.  Our prayers are also that everything on his MRI check out.  This is our desire.  And we can trust that God does know the desires of our heart and hears our prayers.

Thank you everyone for your prayers today!  Lots of love, The MN Juliens

Smiles, smiles, and more smiles

What a wonderful moment that I'll never take for granted anymore!  Seeing Luke smile, real smiles, over and over!!  After a VERY long morning nap (he's in the midst of a cold), I fed him and then put in his hearing aids for play time.  I was singing songs, in a very low voice, and he broke into multiple smiles.  They kept coming! Grandma, James, and Addie were all able to see his smiles as well.  :)

Our friend Jessie also graciously came over this afternoon to do a quick assessment and give PT tips to me.  It was great to go over neck muscle and arm/leg muscle tone exercises.  Thank you Jessie! We are so blessed to have wonderful, smart PT friends! :)

Luke

It is such a blessing to watch our little Luke grow.  Addie and James are the most amazing siblings, and their interactions with him are so precious! 

So many prayers have been answered these past 2 weeks.  Luke continues to feed really well, and he is actually enjoying it!  He can feed, burp, and play! No more fussy time, throwing back his head, and bending his back in a C.  We only gave a handful of Zantac doses, so all I can chalk up the change to is prayer and Luke getting bigger.  He over 9 pounds now, doubling his birth weight.

He is interacting more with us.  He holds a gaze for longer periods, smiles (we usually can catch one a day), and likes listening to toys and his mobile with his hearing aids in.

His neck muscles keep getting stronger every day.  He is enjoying tummy time and having his sister lay down next to him and "chat" with him.

As of now, I am scheduled to go back to work on March 10th.  Please pray for this transition for our family.  Even though I am excited to get back and see all my wonderful students, it's always hard to go back after leave.

Thank you again for your prayers!  :) The MN Juliens

First loose tooth, lazy Saturday nights & tracking

Addie's days away from loosing her first tooth!  She is all prepared with the Tooth Fairy Pillow and is eagerly anticipating money from her.  :)

We had a busy Saturday and enjoyed hanging out tonight and watching the fishing show with daddy!

Little Luke has progressed a ton on his tracking and looking at us.  He rarely made eye contact, and has started to track and look at us and objects for an extended period.  It is so wonderful to see! We got 2 smiles out of him yesterday as well. :)

Luke - 3 months - Our prayers

Our little Luke is almost 3 months old!  I can't believe how quickly time flies.  Even though my time home with him has been filled with emotions and stress, it has been filled with wonderful moments as well.  I captured a couple pictures this morning of our bright, blue-eyed little bundle of joy.

Pre- bath time!

Luke is following along in his siblings' footprints.  He's developing the Julien belly!

Almost a smile!

We have his next set of tests scheduled for next Wednesday, March 5th at 10:30am.  We would appreciate specific prayers for:

• Sedation - he will need to go under to have his 2 MRIs.  At this time, he will also have an EKG, blood draw, and will have his circumcision fixed (it adhered).
• Sleep/feeding - Both have been going great!!  Continued sleep at night and successful, enjoyable feeding for little Luke.
• Emotions/patience - Stefan and I have been doing pretty good, considering.  We both ask that you continue to pray for us, our emotions, sleep, and that we would still pour out patience and love to Addie and James, even when we are discouraged.

We can't thank you enough for your prayers, kind messages, emails, phone calls, and conversations that have been flooding us!  We so appreciate your love and support. I am in awe at how many people have gone through similar experiences.  May God continue to strengthen and show His love to you through your situations as well!  Lots of love! :) The MN Juliens

Another trip to Children's

The past 2 weeks have been pretty stressful around the Julien household.  Little Luke has never been a very good eater.  He was really fussy as a newborn, but then mastered breastfeeding (somewhat) by about 1 month.  But then he suddenly regressed and has been miserable the past 2 weeks.  Feedings were sometimes taking as long as 1.5 hours, and he was so incredibly gassy afterwards that he would spend 30 minutes just screaming and in a backwards C position! 

I was starting to get really concerned with not only his poor feeding, but his neck muscles.  Since he always seemed to be miserable after feeding, the only position that felt good to him was when his neck was bent backwards.  After his bouts of crying, it's like all muscles gave way and his head seemed to wobble and he'd slammed his head into our shoulder and pass out from exhaustion.  I just felt like something wasn't right and I made an appointment with his doctor. 

She was able to see him on Wednesday and was also concerned.  She then mentioned that his muscles were really tight, and wondered if he had too much muscle tone.  She made us an appointment at Children's to see the neruologist. 

That night, as Stefan and I googled "too much muscle tone" we were immediately alarmed and sick to our stomach.  CP is a leading diagnosis for babies with too much muscle tone.  Again, our emotions skyrocketed and all we could do was pray.  Our specific prayers were, 1)for Luke to start feeding breastfeeding again, 2)sleep - he was up every 2 hours at night, 3)neck muscles, 4)for him to be cognitively okay.

Thursday morning, we headed to the Noran Clinic for Luke to get an EEG done.  What a crazy process.  They had to first scrub his head with exfoliate solution, then attach 25 electrodes with this glue gunk, and then wrap his head in gauze so they didn't fall off.  The entire test took 45 minutes, and he was quite the trooper. 

We then had to wait another 30 minutes to see the doctor.  Meanwhile, we tried feeding Luke in the waiting room and again he was overcome with pain.  Crying, arching his back, screaming, so when we finally saw the doctor he was in rare form. 

Upon entering the room, I was overcome with emotions, but felt God's presences so close to me.  The doctor opened with, "So tell me about Luke."  To which I started crying and replied, "Can you just tell me how his EEG looks!"  Praise God, his EEG looks normal.  He has a spots at the back of his brain that look slower she said, but this could either be nothing, or something.  She is recommending we do some further genetic testing to rule out multiple syndromes.  She also recommended that I stay home for a bit more.  I was supposed to go back to work on Monday, but knew that there was no way I'd be able to concentrate.

The neurologist also said he did have lots of muscle tone, but that seemed to come in waves as he would get agitated.  She said he didn't look like a CP baby, which was an answer to prayers.   She also gave some thoughts on his neck muscles.  Since he arches his back so much, he has strongly developed neck muscles in one position, and he control of his neck in the forward position is just lacking.  We went home with a bunch of activities and exercises to try out with him. 

We then saw the genetics NP.  We were there for another 1.5 while she did a complete exam and we went through a lengthy family history and genetics screening questionnaire.  Nothing was noted at this time.

Our next step is for him to have an EKG, Brain MRI, MRI (ear), and 72 genetic tests.  This will all be done on the same day (in about 2 weeks) and he will need sedation for them.  We continue to ask for your prayers!

I know, that is a lot of information.  It has been a lot for us to take in as well!  God is so incredibly good though.  Stefan and I know that everything is out of our control, and that all we could do is call upon our father.  He is good!  He does hear our prayers and he knows our desires.  He gave us the biggest answer to prayer.  After we left the hospital that day, we found out he

1. didn't have CP
2. cognitively was okay
3. immediately started successfully breastfeeding - seriously!!! He was like a changed baby.  Jeff and Carley saw this as well and said it was like looking at two different babies!
4. started sleeping again - last night only getting up at 3am.

God is amazing! He does answer prayers!  I know we have many more emotional roller coasters to ride, but through all of this, we know God will go before us, behind us, and beside us.  We know that through everything, God will be glorified!

Thank you again for all your prayers!!  They are so felt and we have such a strong sense of his Holy Spirit.  :) 

Now to get back and join my family in the basement! We are watching the Olympic hockey game.  I can hear James shouting, "Go Canada, go!"

Love, from the MN Juliens

Jeff & Carley visit MN

We are so blessed to have Stefan's sister Carley, and her boyfriend, Jeff, staying with us this week.  The kids were so looking forward to their visit and had such a blast hanging out with them today.  Lots of books were read, games of hide and seek, hockey games, sledding, and rescuing Norman. :) 

Luke's new mobile

Luke loves his new mobile.  He has been wearing his left hearing aid, but his right one isn't fitting properly.  Both are giving off a lot of feedback, so the audiologist had new ones made.  We get to pick them up later this week.  In the meantime, he is loving being able to hear sound and it's SO much fun to watch! 

Swim Lessons

Addie and James had their 2nd night of swim lessons at the Williston Center.  They are both taking classes on their own this year (no more Dad and Mom getting in the water as well).  Addie is learning the back float, how to take breaths and the front crawl.  James is practicing jumping off the side, kicking and having fun!!  They loved to swim and are little fish in the water.

Hearing Aids

Luke received his hearing aids today!!!!  It was so precious to watch his little face as the audiologist turned them on for the first time.  He immediately went still, looked right at me with wide eyes, and then his little lip puckered into a sad face.  :)  Perfect!

Our new audiologist, Laura, is wonderful and we are so lucky that the clinic is only 4 miles away.  She spent an hour and a half helping me learn how to turn on, care for, and adjust Luke's new hearing aids.  The ear molds are a little loose so they are giving out a lot of feedback.  She placed an order for new ones, and we should get those by Monday.

Laura explained how the hearing aids will benefit Luke right now. Without his aids, he is not able to hear really anything.  Staying at this state, your nerves/ears start to atrophy.  Having hearing aids will amplify sound, so that his ears will understand that the world around him makes noise.  We will not need to shout or talk loud for him to hear, but long-term, hearing aids will not help him decipher speech. We feel so blessed that he can have the hearing aids for now, and at least hear something!!!

Addie and James were so excited to have him try out his new tool.  They spent the afternoon shaking toys, singing songs, and reading to him.  It was amazing to watch him track toys and turn and look straight at one of the kids who was talking to him.

From here we check-in with our Audiologist every three weeks.  Since babies ears grow so quickly, new molds will need to be made quite often.  This is totally okay with Addie and James as they have already called dibs on the color of his next ear molds: orange and purple.  Hmmm!!!  

Thank you again everyone for your thoughts and prayers!!  We feel so blessed and encouraged by your love and support. 

Love, The MN Juliens

Luke Walter

Hi everyone!! Long time, no blogging!  Our family has grown and changed a lot over the past 3 years.  We decided to start our blog up again to keep family and friends updated.

On November 28th, 2013, at 4:57am, we welcomed our 3rd child, Luke Walter Julien, into this world.  He was born 2 weeks early, weighing in at a whopping 4 lbs. 13 oz.  He was a happy, healthy little squirt, who loved the attention of his big brother and big sister.

Luke, aka, Lukey Pookey, Wally Bally Head, Big Guy (just to name a few of his nicknames), is growing rapidly and is now 2 months old, weighing in at 7 lbs. 10 oz.

At his 2 month check-up, our doctor was quite concerned with his lethargic mannerism and lack of response to any of her prodding (he had just gone down for a nap, and he wasn't waking up for anything).  She called Children's Hospital, and had us check into the ER for blood tests.

On my drive down there, I had a million emotions running through me.  I couldn't reach Stefan at work, my mom answered her phone and met me down at the ER.  Luke and I arrived at the ER at noon, and throughout the afternoon, he was checked out by 11 doctors and poked 9 times trying to get a good blood sample.  By 8pm, they didn't have a diagnosis, so they admitted him saying they thought he had Failure to Thrive.  Geez!!  I called Stefan, he packed stuff up and drove over, my mom came over to stay with kiddos, and we were at the ICC unit by 9pm. 

We ended up staying at the hospital a total of 3 days and 2 nights.  It was a blur!  Here is who Luke saw and had done to him:

• Geneticist
• Audiologist - ABR test
• ENT Team
• CT scan
•  5 different on-call Pediatric doctors
• Phlebotomy - another 7 pokes (never ended up getting enough blood to complete the genetic tests)

Based on the ABR test, it appears God has blessed us with a little boy who has some significant hearing loss. It appears that there are no underlying issues, such as disease or metabolic issues, which is an answer to prayer! And that all his lag in development milestones can be attributed to loss of hearing.  Stefan and I were in a state of shock and grief when we finally arrived back home with Luke late Friday night.  That weekend we felt the outpouring of love from our family, friends, and church family.  Emails flooded our accounts, phone calls, meals, we felt so incredibly loved. 

During our time of grief, God showed up (as always) and wrapped his loving arms around us.  Giving us comfort, peace, and reminding us of the wonderful blessing our little Luke is, and will be in the future.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Colossians 1:11

We can already see how his life and story, is touching the lives of many around us.  We know that God has a plan and a special purpose for our little Luke.  This gives us so much hope and comfort.

"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." - Romans 8:28

This past week, Luke had 2 more appointments.  He met with the ophthalmologist.  We were concerned that since his hearing was impaired so might his vision.  Prayers were answered, and the doctor said that his eyes looked healthy!  Praise God!  He does have some mild ptosis (droopy eyelid, just like his brother James did as a baby).  We are going to monitor this, and check back in 3 months.

His other appointment was with the ENT doctor down at Children's.  He said his CT scan looked great, and his general shape and health of the ear is wonderful.  Luke does have a significant amount of fluid in his inner ear.  They were originally thinking of putting tubes in his ears, and that this might increase his level of hearing.  The ENT said that the fluid looks clear, and that we should just wait to see if it drains on its own.  He didn't think eliminating fluid would increase his hearing enough to make hearing aids a viable long term solution.

So... Luke is a perfect candidate for a Cochlear Implants, and he can get them as early as 8-9 months.   From Wikipedia: A Cochlear Implant, is a surgically implanted electronic device that provides a sense of sound to a person who is either deaf or severely hard of hearing.  The implant can enable sufficient hearing for understanding of speech. The quality of sound is different from natural hearing, with less sound information being received and processed by the brain. However, many patients are able to hear and understand speech and environmental sounds. Newer devices and processing-strategies allow recipients to hear better in noise, enjoy music, and even use their implant processors while swimming.

In the meantime, Luke was fitted for ear molds, and receives his hearing aids on Thursday.  Luke can hear 90 decibels and above, which puts him at severe hearing loss (see chart below).  The audiologist is hoping that with hearing aids, and us talking VERY loudly, he can hear a bit of sound.  He will not be able to decifer speech, but at least he'll be able to see our lips move or a toy, and hear a soft sound.

From wikipedia

This week, a Speech Pathologist is coming out to do an initial assessment of Luke and talk about resources available.  He will begin Speech and Language soon, and we are so lucky that this is federally funded and SP actually do home visits until children are school aged.

The road ahead still seems unclear and we know that we, as parents, and Luke have a TON of work ahead of us.  Stefan and I are nervous, but also excited to start this journey with Luke and our family.  All of us have started learning ASL, Addie being the one to pick it up the quickest (she already has around 70 signs in her repertoire).  Sign language will be our main form of communication until he is around 2 1/2 years.  Then at this point, with his Cochlear Implants, he will be able to start forming words to match his signs. 

Thank you everyone for your thoughts and prayers!  We feel so blessed by your love, and most importantly, the love that our Father gives us.  He promises to always walk along side us.  He knows what's ahead before we even get there.  It is the trust and faith in Him, that allows us to understand this change in OUR plans, is exactly what he has already planned for us and it is wonderful beyond what we could imagine.

Blessings to you all and I promise to email and update our blog as much as I can!  Love to you all!

Love, the MN Juliens