Safe by Phil Wickham

http://www.youtube.com/watch?v=a6c3CYdqTG8&feature=player_embedded

This is the song my dearest friend Kari brought me a few days after we received the news about Jaron.  I put it into the CD player and was weeping after the first three words.  Amazing how music can bring you to your knees and mend your broken heart at the same time!  And then a few weeks later, more friends from church got tickets for Brian and I to go to the Leeland, Phil Wickham and Matt Maher concert.  We have truly been ministered to by music!

Testing, Testing 1 2 3

This week we had a few doctor visits and lots of sickness.  All 5 of us (besides Jaron, miraculously) got sick.  I ended up with walking pneumonia (thank you Lord for antibiotics) and everyone else had coughs, runny noses, and a fever here and there.  We are still fervently praying that Jaron does not get any of our colds because pneumonia is the #1 concern for baby's with MDS.  It is not easy to keep 3 loving (sniffly) siblings away from their favorite baby brother!

On Monday, Jaron got a renal ultrasound to check his kidneys and bladder and then went directly over to the audiologist for his routine hearing screen.  Then on Tuesday morning we were back at St. Vincent Hospital for an ECHO (heart ultrasound).  They took over 100 pictures of his little tiny heart.  So far, I haven't heard the results of the two ultrasounds.  The genetics doctor referred us to them because typically with MDS they have problems with their heart and kidneys.  We were surprised to find, after 2 1/2 hours in audiology, that Jaron has moderate hearing loss.  In the next few months he will need to be fitted with hearing aids.  I don't know if this has anything to do with the syndrome or not.  Its sad that all this time he hasn't really heard much of what we say.  And its hard to know how loud we need to talk to him in order to be heard.  Hopefully Early Intervention specialists will soon be visiting our home to help us understand what we can do.  This coming Tuesday he will see an ophthalmologist, then I will let you know how his eyes are.

An African Name

For those who don't know, Brian was born in Zambia as his parent's were missionaries there until he was 6 years old.  In Africa, sons are considered a special gift and father's are honored greatly when a son is born. The tradition, as I understand, is that an elder in the community names the newborn baby boy.  Because Brian was born there, he was given the name Bupe, which means "Gift from God."  He is still known in their home village of Mbala as Bupe.  We decided when our first son was born that we wanted to carry on that name, so he is Lukas Bupe Albaugh.  Jaron was born right as Gracewell Mwansa was visiting from the UK.  His home town is in Zambia and he works alongside Lee with NESTeam among many other organizations helping the area.  Gracewell prayed for and decided on a name for Jaron and we were so honored to receive that blessing on Tuesday night!  The name he gave Jaron is Nkumbu, which means "The Grace of God"  This is just further affirmation that our baby boy is a very special gift!  Now all 4 of our children have "Gift" or "Grace" in their name!  Lukas (Bupe=gift), Haylee (Grace=gift), Hannah=grace, Jaron (Matthew=God's gift and Nkumbu=grace).  We have 4 precious GIFTS!!!

Jaron's Song

I made up a little song for Jaron and the kids love to sing it to him over and over.
It is sung to the tune of Frere Jaques.

Jaron Matthew, Jaron Matthew
You will sing, you will sing
You're a gift from God, you're a gift from God
We love you, we love you

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."