Backyard Photo Shoot with Auntie Lissa

Happy Birthday!

Hannah is 3 and auntie Jenna is 15 on May 18th
Auntie Katy turns 24 on the 24th
and Jaron will be 2 months old on the 25th
Doesn't everyone celebrate birthdays the day their baby is discharged from the hospital? Ok, we are a little crazy!

Home SWEET Home

This is just before he got off the oxygen and ready to come home.  I didn't have my camera until the last day.  I will post more hospital pics when I get my sister's camera.  See my long, long post below...

After a traumatic ER visit, 3 scary days in the Pediatric Intensive Care Unit, and a day recovering on the Pediatric Floor, we are VERY glad to be home!  It all started with an ear infection... Thursday evening we got an antibiotic and he just wasn't getting better.  Friday afternoon and thru the night, Jaron was eating less and crying more.  By Saturday afternoon, he had only had 5 ounces to drink in 30 hours and no wet diaper in 12 hours.  The pediatrician on-call said that a baby should not go 6 hours without a wet diaper and he should go in to the ER to check for dehydration.   Brian left work early so that he could come with us.  I'm so glad we were there together because it was a horrible experience.  We were advised to go to Emanuel because they have a Children's ER and intensive care.  Also, Jaron's neurologist is there so he is in their computers already.  We learned so much about the specific needs of our baby and how to advocate for him even when we are unsure and being advised by a very experienced doctor to do something we are uncomfortable about.  Basically, when you present a very ill baby who is less than 60 days old, you are bound to get the WHOLE gamut of testing no matter what.  They tested his blood, urine, chest x-ray, blood gases, and a lumbar puncture for meningitis.  We now KNOW to never consent for a lumbar puncture on Jaron.  We had to learn the hard way.  It is like an epidural because they have to draw fluid out of their spine.  Any woman who has had an epidural knows, it is an uncomfortable process because you have to lean forward, curling your back and hugging a pillow over your very large baby belly (not fun).  With Jaron, they had to roll him in a ball and try to hold him still while poking a needle in his back.  Brian and I did not want to be in the room for this procedure so we went downstairs and got a bite to eat.  When we came back, he was in a higher trauma room with CPAP oxygen mask on and in obvious distress.  The only report we got was that he turned bright purple and they immediately stopped the procedure to get him breathing.  From then on, poor Jaron was looking and acting horrible.  The day he was born they discovered he has low tone and is unable to support his airway.  He arches his back and neck often, possibly because of acid reflux but also to keep his airway open.  So, of course, when they rolled him in a ball he was unable to breathe.  He was spiraling downhill and the ER doc was seconds from intubating Jaron with a ventilator.  We both watched him helplessly but knew that he was in utter panic and needed warmth, calm, security... and he really didn't like the hi-flow oxygen blaring into his nose.  I asked if they could remove the oxygen so that we could calm him down and they refused.  Brian was not comfortable with the way they were handling Jaron and basically refused their attempt to intubate him because he felt it was their fault the baby had gotten so upset and distressed.  Remember, we brought him in just 2 hours earlier, very calmly, only because he was not eating and peeing, he was in no distress at home.  It felt too extreme to put him on a ventilator right then. The ER doctor then sent us up to the Pediatric ICU and said they could sit down with us and discuss the ventilator.  Thank you LORD!  It was a little crazy when we got him to the ICU initially, but in minutes they had Jaron wrapped in warm blankets and in Brian's arms in a rocking chair (while I gave the nurses his health history for admitting) and the new doctor sat down and talked calmly with us.  Jaron fell asleep peacefully, praise God!  He was never put on a ventilator but he was kept on oxygen from Saturday night until Tuesday at 10 a.m.  They tested for lots of things and just automatically put him on IV antibiotics (which, ironically, treats meningitis so why the lumbar puncture???)  By 2:30 a.m. Jaron had an IV in his arm, his head, and one in his leg that has a tube from his ankle fed thru a vein up to his belly (this procedure required sedation which they kept him on thru the first night).  Then Brian went home and I stayed in a parent's room with 6 beds for PICU parent's.  Jaron was on the hi-flow oxygen until Sunday morning and then was weaned to the lo-flow thru the day and transferred to the normal floor Monday to get off the oxygen completely before being discharged Tuesday.  They are not sure what virus he had but something in his lungs because he required the oxygen.  Probably a viral pneumonia.  He is much better now and so happy to be home!  Thank you for praying for us.  So many more details I could share but I'm just thankful he is ok and our family is back together!

Ear Infection Numero Uno

I love that my pediatrician is open late into the evening, very helpful!  Jaron has been really fussy on top of the cough, runny nose, congestion stuff.  I took him in last night and he has an ear infection.  Luckily, he likes amoxicillin and he isn't doing too bad with the Tylenol (acetaminophen actually with the recall and all).  When I first tried giving him Tylenol in the hospital before and after his circumcision, he choked and gagged and it was a bit scary.  He still chokes on it but I am getting used to helping him clear it up.  His big sister didn't want him to feel left out so I think she got an ear infection too.  We'll know for sure in about an hour and a half.  I think its the left ear for both of them, isn't that fun.  Hopefully, tonight we will all sleep a little better!

I wanted to share my picture of sweet Jaron on Mother's Day!  I got a picture of the other 3 on my phone but I haven't figured out how to get them on the computer yet.

Jaron's eyes seem to be fine so far.  The ophthalmologist wants to see him again in 6 months.  She said its hard to tell for sure at his age but the optic nerve looks good and she thinks he is showing signs of vision.  She thought he may have trouble focusing so we can try to stimulate his vision with flashy, bright-colored or light-up toys.  This would be especially necessary since he is not hearing well.  We don't really have any light up toys,  I will have to start collecting them...  Maybe Early Intervention will have some ideas.  I saw on a site about lissencephaly they suggested those colorful disco balls that project bright lights on the wall.  Wonder where I can find one of those.  Anyone have any suggestions, let me know.

Also, if you are reading this on or close to today's date, PLEASE PRAY for Jaron not to get too sick.  He has a stuffy nose now and I really don't want it to hinder his ability to eat.  He is up to a whopping 8 lbs 9 oz and 21 inches long!  He has come a long way from his birth weight of 6 lbs 5 oz, almost 7 weeks ago.  And it took a lot of bobbling up and down, so this is great progress!

1000 Gifts

So I got a link to a blog and was reading a bit and decided I wanted to start a Journal of 1000 Gifts.  Basically its listing things I am thankful for in a journal.  I found an old journal from one of our church's Women's All Night in Prayer from 2005 and, besides the first few pages, it was empty, so I am going to fill it with my gratitude to the Lord!  I am not going to blog all the gifts but I will share my first 5 with you!  Maybe every once in awhile I will share more.

I am thankful for...

#1 My strong and joyful, Jaron  

(Though I'm not sure of his personality yet, I know he is going to have to be strong to endure all the challenges in his life.  And I'm SURE he will bring LOTS of joy to our lives!)

#2 My confident and nurturing, Hannah

#3 My sweet and graceful, Haylee

#4 My sensitive and kind, Lukas

#5 My generous and loving, Brian

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