I Thank God for YOU!

I'm amazed at how God has provided each step of this journey so far.  Starting way back at my 24 week appointment when we found out we were having a BOY!  My parent's came along and all 3 of the kids were with us.  It was so fun to watch their reaction!  Lukas desperately wanted a little brother and had been praying for a boy for months.  What an exciting answer to our prayers!  And then something was wrong, we were sent directly to a perinatologist to discuss "something about his head" was all the ultrasound tech would say.  My heart sank...  But God was not surprised and we were so thankful to have my parent's there to watch the kids and be moral support for Brian and I.  We spent 3 hours at the doctor's that day and many times since.  We have felt the presence and peace from the Lord during many appointments.  Again, when Jaron was first born and Brian had to return to work, God provided a way out that we never would have imagined.  He got some much needed paid time off so that we could recover from the crazy first week.  So many times, food has arrived at the end of a very stressful day of bad news from a doctor and we have felt so blessed.  And, on several occasions, we have been given money anonymously and were able to pay for a utility that was scheduled for shut off.  Multiple times, Christy and Bella have shown up to babysit, talk, play with the kids, feed me :) and be an encouragement and listening ear. Just this week, Jaron had a seizure and our wonderful neighbor (family friend) Keri, down the street, saw the ambulance at our house and walked right down and took the kids for a "bike ride" to their house.  Since Jaron was stable and all his vitals were good, we decided to let the paramedics leave and just keep a close eye on him.  (We have a Neurology appointment Monday morning.)  Then, just as the paramedics were leaving, Aunt Sandy, Rachel and Leah (who had just brought us some yummy chili for dinner) came back to make sure everything was ok.  They held the baby while we walked down to pick up the big kids and get some fresh air.  Even when you don't have the time to ask for help or the presence of mind to know what help to ask for, God intervenes!  Amazing!  We are SO THANKFUL for SO MANY people who have given their time, food, prayer, money, food, encouragement, babysitting, food, gifts, laundry-folding skills :) music, hugs, cards, diapers (did I mention all the yummy food!) and more, to support us on this journey.  I pray you will be blessed in ways I could never repay!

Appointments, appointments, appointments

In his 22 days of life so far, Jaron has had 8 doctors appointments.  I have 8 more scheduled over the next several weeks.  And when you have special needs, I have noticed, appointments are not just your typical 20 minutes.  I will never again take for granted a normal OB or pediatrician's appointment!  Ever since we found out Jaron had enlarged ventricles in his brain during a routine OB ultrasound at 24 weeks, we have averaged about 2 hours per appointment!  Sometimes up to 5 hours have been spent in a doctor's office.  So today was no different.  It was a physical therapy appointment that turned into a feeding evaluation with a developmental pediatrician who just happened to be in the office (the day before her 2 week vacation to Italy).  My friend, (a PT in the clinic) whispered to me on our way out that this doc is scheduled 6 months out!  Its a miracle she was there and could see us and she was very proactive.  So our 9 a.m. appointment lasted until 1 p.m.  Brian had to leave to get to work by noon, Danielle graciously came to pick up Jaron and I, and Christy was so awesome to stay with the kids at home and help them get their rooms clean!  Basically, my little man is not gaining weight like they would like to see, so I will pump and add powdered formula to get him some extra calories.  This required a feeding eval, a special "Pigeon" bottle (all the writing is in Japanese and they had to bill my insurance), a call to the pediatrician, a scooper from the NICU, precise calculations and confirmation from the Nutritionist. Whew!  Now we're home and dinner just arrived from our friends, what a blessing!

God created ALL things

Brian and I met with a genetics doctor on Friday April 9th to get the results of the chromosomal testing that was done on Jaron in the NICU.  The results were not what we expected.  There is a piece of his 17th chromosome that is missing.  He has Miller-Dieker Syndrome which is characterized by a developmental defect of the brain, caused by incomplete neuronal migration, also known as lissencephaly which refers to a "smooth brain." My understanding is that the grooves that form in a normal brain did not form in his. The outlook is not good for this syndrome.  The paperwork we were given explained severe neurological abnormalities and it is difficult to even read, let alone accept.  The hardest news for us was that the life expectancy with MDS is 1-10 years.  We have no idea what God has in store for our precious son.  He is beautiful and sweet and we WANT to believe he is perfectly normal and healthy.  The only thing we KNOW is that God is in control and created him for a reason.  He is in our life right now and we want to enjoy every single day with him.  As I held Jaron and was praying for him on Saturday morning, I was asking God to hold my little Jaron in His hands.  Then, I was reminded that God not only holds him but He CREATED him.  The Lord's fingertips are all over every part of Jaron's body, He is God's workmanship.  So I searched for that verse and believe God gave me Ephesians 2:10 as Jaron's life verse "For we are what He has made us, created in Christ Jesus for good works, which God prepared beforehand to be our way of life."  Jaron Matthew is what God has made him.  He is here for a reason and God is going to accomplish His perfect will in our son's life! 


Revelation 4:11  "You are worthy, our Lord and God, to receive glory and honor and power, for You created all things, and by Your will they existed and were created."

Jaron Matthew Albaugh

 Born March 25th 2010 at 11:54 am 6 pounds 5 ounces

Thank you so very much for your prayers!  God is truly holding us up and providing in ways I never would have imagined!  Our family (both sides) have been an awesome, ever-present support and taken such great care of us all.  Jaron is just beautiful and all 3 of his big brother and sister's absolutely ADORE him!  Jaron's name sounds like Aaron and its a Hebrew name that means "he will sing" or "cry of rejoicing" and Matthew means "gift from God" and he truly is!  I am doing amazingly well,  I have been praying that every minute of sleep I get will count for 2 minutes and I know God is granting me that request!  Jaron's results from the jaundice test were good, it seems to have stopped increasing so it should get progressively better.  Also, the preliminary results of the EEG were normal, huge relief!  I don't know exactly what that means but at least there is nothing to be concerned about at this point regarding seizures.  This will be a long road of doctor's visits and unanswered questions but I know the Lord is with us every step.  Another HUGE answered prayer, Brian was off work from Costco only 3 days (2 days in the hospital and 1 day at home) then he went in Sunday and Monday and he was so overwhelmed, stressed, scared and feeling the pressure of providing for our family.  On Monday when he showed up for work one of the supervisor's approached him and asked if he needed a little time off.  He explained that he was so new and didn't have any paid time off and didn't know of any alternative.  She said there is a "vacation pool" which coworkers can donate their extra vacation time for emergency situations. So he only has to work 2 days of the next 14!  I can't tell you what a miracle this is!!!  He and I are SO RELIEVED!  We had a really quiet day yesterday and Hannah came home last night.  We will probably bring Lukas and Haylee home tomorrow evening (they were home two days and with family for a couple nights).  Please continue praying for our family and for little Jaron that doctor's would have wisdom.  I have a list of follow-up appointments for neurosurgery, neurology, physical therapy, genetics testing etc...  He is still on a monitor for his breathing and heart rate because he has really low muscle tone so unless his neck is supported well his airway tends to get blocked.  We have to hold him carefully and make sure he doesn't start turning purple.  In the NICU he had a head ultrasound and they confirmed the same results of enlarged ventricles but they said they did not see a corpus colosum at all.  I have been told by so many doctor's that a baby's brain is so moldable it can form new ways of communicating through different pathways and work completely as if it is normal.  It's totally in God's hands and we just can't wait to see what kind of miracle He wants to perform in Jaron's life! 

Love you all,

Brian, Monica, Lukas, Haylee, Hannah, and Jaron Albaugh

Email sent out March 31, 2010