Henry ~ an angel among us

Heaven gained an angel yesterday as 

Henry earned his wings.

Sweet baby boy!

 You will forever be missed, 

but never forgotten.

Your precious family!

Handpicked by God from the beginning of time.

Oh, dear Henry, you are so loved.

May you play in the splendor 

of our Heavenly Father's presence,

sweet Henry.

The Dobrovits Family chip-in is located at the top of my blog.  All donations will go directly to the Dobrovits Family private PayPal account.  Thank you for helping with medical and funeral expenses.

Matthew is FOUR today!

Happy 4th birthday, Matthew!!!  

You are simply:

AMAZING,

INSPIRING,

FUNNY,

SILLY,

LOVED!!!

We love you beyond words, Matthew!

May you have many, many more

Happy Birthdays!!!

Cincinnati Friends

We have been blessed to know several families who live in the Cincinnati area.  Most we know through Reece's Rainbow and some we know through our Down syndrome support group, Life's Journey with Down syndrome.

In addition to the families we have known for quite some time, we have been blessed to meet a few families since we arrived in Cincinnati through Cincinnati Friends, the Cincinnati Children's Hospital colorectal families support group.

When we first arrived in Cincinnati, there were a few things we needed to buy since we could not fit everything in our bags for the plane.  My friend Jamie jumped right in and offered to take us to Walmart to pick everything up.   Thank you so much Jamie!!  Jamie and her husband are adopting sweet Eli and actually leave to go meet him TOMORROW!  You can follow their journey HERE!

Me, Jamie and Michael

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Once Michael got settled into the hospital, my friend Mary stopped by to have lunch.  What a nice visit we had!  Thank you, Mary, for coming and thank you for all your help as we prepared to come to Cincinnati.  You have made this trip much easier as you guided me every step of the way!! !  I know Mary through RR as she is a fellow adoptive mommy to many!

Me, Michael and Mary

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Then my friend Mary Beth stopped by with her friend Kathy and we all had the best visit about life, Down syndrome, horses, living in the country etc.  We all have children who have Ds as well as children who do not.  Thank you, Mary Beth and Kathy for coming to visit with us!

Kathy, Mary Beth, me and Michael
(Blurry, yes, but glad to have it ;-)

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We have one of the sweetest clinical instructor nurses on the entire GI/Colorectal floor.  She helps with all the student nurses and from time-to-time lends a listening ear to moms who are 1200 miles away from home!  Thank you, Michelle, for your compassion and listening ear on more than one occasion!!  She also has a precious nephew who happens to have Ds and I have enjoyed hearing all about him.

While posting on the CCH support group, Cincinnati Friends, another mom messeged me that I might know her sister as she is a clinical instructor on the GI floor.  No way!!  Could it be?!?  Yes, it was.  Michelle and Angela are sisters.  What a small world!  We were blessed to meet Angela and her sweet Adam the other day and they were so kind and brought Michael some new chew toys!  He LOVES them!

Angela, Adam, me holding Michael, and Michelle

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While coming out of the elevator one day, we were stopped by a mom who was with her little boy.  She said, "Hey, I think I know you from online!" and we talked for a minute and indeed, she knew me from Cincinnati Friends!  I'm so glad we ran into each other that day.  She and her son, Declan came to play one evening the day after Michael's second surgery.  Michael could not get out of bed to actually play but that did not stop the boys from playing!  It was sweet how they figured out how to play through the bars of the crib.  We hope to have many more play dates.  Shelly's younger son, Lincoln, is in CCH and will have surgery early next week.  Please remember him in your prayers!

Declan and Michael

God never ceases to amaze me at how He puts just the right people in your path at just the right time.  Thank you, Father, for taking care of us during this time!!  Thank you for placing just the right people in our path.

Michael's second surgery

Michael's first surgery in Cincinnati was 9-24-12.  All went well with no surprises or complications.  For the next 5 days, we kept Michael fairly still with his legs bound together to promote healing whenever he was not up walking for exercise.  His incision looked like it was healing well so we removed the leg restraints that evening.

Kayla and Michael on our 3-hour pass to unhook
from his PICC line TPN and go for a walk without
leg restraints or IV pole.

The very next morning we new something was not right.

I went to change Michael's diaper after a good night sleep, and I found bright red blood in his diaper. I immediately closed his diaper and called for a nurse. The nurse did not think the amount or color was too alarming since he had just had major colorectal reconstructive surgery.  I also noticed that some of the incision looked a bit more open than it had and told the nurse and Dr. on call on the floor that day.  He too was not terribly alarmed.  The next morning a bedside exam was performed by Dr. Pena and he agreed that an area of the incision had 'spread' and wanted to see if the area would close on it's own over the next couple of days.

In the meantime, Michael was scheduled for a sedated ABR hearing test on Wed so Dr. Pena decided to go ahead and do a sedated exam since Michael was already going to be under anesthesia for the ABR.  Turns out, this was a blessing as more stitches had turned loose and Dr. Pena needed to repair the area.  Anesthesia started at 11:50am (ABR) and Dr. Pena began his portion about 1:00pm.  Surgery was over at 1:57pm and I visited with Dr. Pena just after 2:00pm.

Waiting to be taken to OR for second surgery

Michael's patient number for surgery ~ 518936

After surgery, Dr. Pena entered the parent post-op visitation room still in his scrubs with a serious look about him.

"Something very unusual has happened."  I knew with that one sentence to brace myself for what was to come next.

"The entire outer layer of stitches pulled apart..., but the second layer held intact.  Had the second layer also came apart, Michael's bowel would have recoiled up into his abdomen and he would have needed a colostomy.  We had to restitch the entire... area.  We have no idea why this happened, it just did.  Michael will need to stay in the hospital on TPN for the next seven days and after that time, if all the stitches hold, we will reevaluate and tell you where we go from here."

We knew going in that some stitches has pulled apart but we did not know the full extent until afterward.  We are just so thankful to be at Cincinnati Children's Hospital so Dr. Pena can take care of emergencies like this!

Michael is recovering well.  He only had 3 doses of morphine after the second surgery and nothing else.  We keep both of his legs in one pant leg of a pair of sweats and that seems to be keeping his legs together very well while allowing a little movement to keep the blood flowing.

On Wed of next week, 10-10-12, Dr. Pena will evaluate the newly stitched area and decide if everything is healing enough to allow Michael to begin eating by mouth again so we can see how well his intestinal tract will work.  If all goes well there, we will be allowed to stay at the RMH and start the Bowel Management Program.  The BMP consists of daily x-rays of the abdomen and clinic visits with Dr. Pena to evaluate how well food is moving through Michael's digestive tract and exiting his body.  Depending on how that process is coming alone, we will give meds to regulate and control the waste as it forms.  Once we complete the BMP we will get to come HOME!!

Adoption grants

The children below all have very large adoption grants through Reece's Rainbow.   These adoption grants stay with the child so whoever commits to one or more of these children will receive the grant once they get a travel date as long as all other adoption requirements have been met.

The burden of raising the funds to move forward with an international has been largely erased.  Could one of these children be your child??  Please contact Andrea from Reece's Rainbow to inquire about any of the kids below.


                       Megan 2h
 
Adoption Grant: $24,055.50
Girl, born December 2005

Eyes: Blue
Hair: light brown
Temperament: Active, assertive, social

Diagnosis: Down syndrome

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                   Heath-47

  

Adoption Grant:  $20,905.50

Boy, Born April 8, 2001

Heath is a sweet little boy who desperately needs a family.    

Heath is a ten year old boy with Down Syndrome. He is tiny in stature. His feet hardly reach the edge of his shared wheelchair. Because of his age, he has already been transferred from the stimulating environment of his baby house to a dull and underfunded mental institute for boys ages 6-18. He is no longer the youngest boy in his group, but he is certainly among the smallest.

Heath is not a recent transfer. He has lived in the stifling boredom of institution life for a long time. He has lost the vivacity of life at the baby houses. In his three years at the institute, he has been given nothing of his own. He has not seen a book or a toy. He has never been gathered into anyone’s loving arms. He is a very lonely little fellow in desperate need of love and comfort.

We have few other details on Heath. He has been seen in a wheelchair, so he may not be able to walk. We don’t know if or how well he talks, or any other details on his medical condition. We do know that he is a cute, chubby-cheeked, dirty and neglected lonely little lost boy who needs a mother more than almost anyone else in the world.

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            Preston-2h

Adoption Grant:   $15,318.14

Boy, born October 2005

Eyes: Blue
Hair: light brown
Character: smart, active, social

Diagnosis: Down syndrome

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                     Brent

Adoption Grant: $15,415.85

Boy, Born June 21, 2005

PRAISE GOD for a new photo of Brent, SMILING, even though he has been sent to the institution.   Look how darling this little one is!   Brent is an orphanage favorite, and is blessed to be part of an orphan care program that provides him with a nanny and one-on-one stimulation.   He is considered lower functioning, but will truly blossom like a flower in a loving family environment.

From his medical records:   Severe mental retardation. Down syndrome. Displastic cardiopathy (О.О.О.) Converging strabismus. Post-tuberculosis neuro-sclerosis.

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The 7 children on this page all have grants above $10,000!

http://reecesrainbow.org/category/movingmountains/sizeable-grants-10000

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The 7 children on this page all have grants above $7,500!

http://reecesrainbow.org/category/movingmountains/sizeable-grants-7500

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The children on this page all have grants above $5,000!

http://reecesrainbow.org/category/movingmountains/sizeable-grants-5000

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The children on this page all have grants above $2,500!

http://reecesrainbow.org/category/movingmountains/sizeable-grants-2500

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Surgery Day

Surgery was a success!

PTL!

Michael continues to do very well post operativly.  Pain continues to be the biggest hurdle with Michael's surgery and even that has been quite manageable.  He is being given Morphine on demand via pump (up to a specified dose per hour/per day) and IV Ibuprofen (Toradol) every 6 hours.  His pain is fairly well controlled between these two meds.

The day of surgery was very relaxed and laid back.  Surgery was scheduled for 1:38, lol, but was pushed back due to a power outage in the OR.  They have back up generators that immediately turned on but they did not want begin surgery until the issue was completely resolved.  We gladly waited.

l)

Waiting to go to OR

More waiting...due to power outage in OR dept

Fixing to roll down to the OR doors with  mommy and Kayla

The surgery went as planned with no surprises as we were told by Dr. Pena.  There was only 10ml of blood loss and no complications.  In addition to the issues Michael had from previous surgeries in his birth country, Michael had a rectal stricture which had all but closed off the entire colon.  Dr. Pena had to remove the stricture plus part of the rectum and taper what was left to fit Michael's new anatomy. Everything was sewn back together in it's proper place and Michael is a new little man tonight.  Amazing!

Below is where Kayla and I waited during surgery.  Very nice!

OR Waiting Room

OR waiting room

OR waiting room...empty because we were last to get out.

 It was estimated to be a 4 hour surgery and that estimate was spot on.  I explained Michael's history to the anesthesia team and they allowed Kayla and I to walk him back to the surgery room doors, OR room 16, and they gave Michael versed right then and there.  He began to look groggy and they took him to the OR at 3:15.  Dr. Pena started the actual surgery at 4:37 and finished at 6:20.  It took until 6:59 to get Michael closed and he was off to PACU at 7:01.  Kayla and I got to go see him at 7:40.

I got to see the incision site today and it was both a surprise and exactly what I expected.  It runs from his lower spine, up between both legs and stops at his private area.  There are hundreds of stitches both internal and external.  I expected this but I did not expect the stitches to be hidden as well as they are.  It almost looks as if an embroidery stitch was used.  It's that good of a job!  I wish I could post pictures so you could see just how wonderful everything looks, but I think I will spare Michael the public exposure. lol.

For the next 5 days, we will have to do our best to keep Michael still with his legs mostly together to keep him from pulling out the stitches.  We are lightly wrapping his thighs together in a blanket and it seems to be working pretty well.

For 10 days, Michael will be fed a liquid nutrition through an IV PICC line, which is a type of central line.  He will not be allowed to eat any food or drink any liquids by mouth during this time because they do not want any stool to form and thus pass through the newly created opening while there is a fresh incision with stitches.  We are not supposed to not eat in front of him during this time as it may cause his tummy to growl or distress him since he cannot eat.  So, we eat after he goes to sleep or sneak something with our back turned towards him.  It's tricky.  We can also go eat in the guest lounge but have yet to do this.


For the next month we are to carry him in a 'scoop' hold instead of on our hip as he cannot straddled  anything and we will be double diapering his bottom to provide extra cushion for the incision site.

For the next 5 months there will be twice daily rehab that Jeff and I will be working with Michael on.  I'll spare you the details but it involves keeping scar tissue from forming and closing off parts of the incision site that need to remain open.

Michael is expected to be in the hospital until Oct 6, then we will stay in Cincinnati at the Ronald McDonald House another week to attend daily clinic visits with Dr. Pena plus to take daily abdominal x-rays to make sure everything is working properly inside.  I'll also attend a bowel management program to learn how to care for Michael's new anatomy.  Michael is expected to be released to go home Sept 13!  I cannot wait!!!!!  Though, I will miss Cincinnati and Cincinnati Children's Hospital.  We have had such a wonderful experience here!

Ronald McDonald House

1:38pm

Michael's surgery will begin at 1:38pm tomorrow afternoon.  Not a minute sooner, not a minute later. lol.  Just cracking up at that time!  Be there or be square.  If you are local, feel free to run by and sit with us.  It should last about 4 hours. 

Cincinnati

We are in Cincinnati!

''We'' meaning Michael, Kayla and myself because Michael is going to have surgery to correct an anal malformation that he was born with.  It's called Imporforate Anus and it's where a baby is born with no opening for waste to exit the body.

Typically, children who are orphans in the country Michael was born in will die from this condition shortly after birth because there are no funds for such a major operation for orphans.  Michael was one of the few who received surgery because the doctors in his region needed to practice performing this delicate surgery.  I'm sure they did their very best, but they were not able to complete the surgery fully and that is why we are in Cincinnati.

Dr. Alberto Pena is our surgeon.  He is a pioneer in pediatric colorectal surgery and people from all around the world come to Cincinnati specifically for their children to be cared for by Dr. Pena.  Just the other day, we sat in the waiting room with a family from Israel, another from India and another from S. Carolina.  We feel so blessed to be able to have Dr. Pena helping Michael.

Michael was admitted Sat, Sept. 22 to begin 2 days of digestive tract clean-out.  He was given an NG tube and GoLightly was started.  This is a solution that liquefies anything within his system so he can eliminate it and be totally clean inside for surgery.

One word of caution....there is nothing 'go lightly' about GoLytely!  It should be renamed GoAlotly with a cautionary disclosure to wear old clothes if you are the one caring for you child receiving this solution!

Surgery will be sometime on Monday if Michael continues to stay healthy.  He developed a junky nose upon receiving the NG tube and is extremely congested now.  No fever or coughing means he can still have surgery.  We're praying it's just irritation from the tube and nothing more!

We did have a few hours on Thursday after clinic visits and testing so we walked over to the Cincinnati Zoo.  It was mostly overcast with cool temperatures and a perfect day to go to the zoo!

We are so blessed to know several families through Reece's Rainbow who live right here in Cincinnati!  They have all been extremely helpful sharing information and experience about Cincinnati and the Children's hospital.  My friend Jamie even took us to Walmart the other day to pick up a few things that we could not fit into our carry-on bags!!  Thank you Jamie!!!!!

I'll update when I can as soon as surgery is over.  Thank you all so much for covering Michael in prayer.  Knowing he is being lifted up is so comforting.

Jeff is taking time off work and is staying home with our other kids while we are in Cincinnati.  He is settling  into a pretty good routine and things are going well.  Prayers for him are certainly welcomed as well!