For additional updates beginning September 1st, 2011 please visit the Prayers for Lilliana Facebook page.

Lilliana Joy Dennis was born on May 17, 2011 at 1:03pm.  At 4 lbs. 7 oz., and 17 inches she is the 5^th child of Russell and Rhonda Dennis – their first girl!

Shortly after her birth Lilliana was diagnosed with Trisomy 18, also known as Edwards syndrome.  It’s a condition which is caused by a chromosomal defect which occurs in about 1 out of every 3000 live births.  Normally at conception, 23 chromosomes from the father and 23 chromosomes from the mother combine to create a baby with a set of 46 chromosomes in each cell.  A trisomy occurs when a baby has three #18 chromosomes instead of the normal two, and results in significant medical complications.

Please pray for Lilliana and her family, and you can visit the Prayers for Lilliana Facebook page for additional information and progress updates.

Day 12 – Saturday

Saturday was a special day at the Dennis House.  All the boys were here, and we had a wonderful day.

The rest of the boys got their chance to hold little Lilliana – Philip arrived on Saturday morning at 3:00 a.m.

Professional photographer Robert Page came to the house to take family pictures.

Everyone loved being pictured with the new little girl.

Day 13 – Sunday

Some folks think that 13 is an unlucky number – but we have enjoyed 13 wonderful days, and we feel blessed!

Sunday was Lillian’s first chance to be in church at Waverly Baptist Church, and she slept right through the whole service.

She did look really pretty in her lavender and white dress.  The first congregational song today was “Count your Blessings,” and we really do count it a blessing to have enjoyed these last 13 days with little Lilliana.

At the close of the morning service, we had the baby dedication with Pastor David Ball.   You can CLICK HERE to see the video.

 

Day 14 – 20 (Monday-Sunday)

 

For the past week, little Lilliana has enjoyed apretty steady routine – Eat approximately every 3 hours (still through atube in her mouth), get changed, and wake up occasionally to check on theworld.

But what Lilliana does best is sleep.

 

Lilliana made it to church for the second Sunday, this time in her pinkdress and new pink booties.  True to form, she slept entirely through themessage that the pastor preached from Isaiah 53.  She is now 2 for 2.

 

After church, Lilliana attracted a crowd of friends.

 

This week, our care for Lilliana has flowed with changes in our room. I have rearranged Lilliana’s crib and corner, and now she has gained a 2ndcorner for all her clothes.  We are grateful that she is not into shoes,belts, and purses. 

Let me again say, we are so thankful for all of your prayers and kindnesses.  They have meant so much!      - The Dennis Family

June 7, 2011

Today was to be Lillian’s projected day to be born, but instead God sent her to us 3 weeks early. Today, we decided to have a little birth date party to celebrate.

 

Lilliana’s Dad went and bought a special cake.

 

Family gathered, including Grandpa and Grandma Gentile & Cousin Belle from Ohio, and Uncle Dan & Cousin Ashley from Arizona. Presents, cake, ice cream, and family made for a great event.

 

Lilliana receives a lot of love, and today we received some good news. Visiting the doctor on Tuesday, little Lilliana gained 8 ounces, and now weighs 4 lbs. 9 oz. She also grew about ½ inch.

Day 23 – 27 (Tuesday-Sunday)

Lilliana continues to eat, sleep, and with the exceptionof the oral feeding tube, to act like the little baby she is.

 

This week Lilliana had many visitors, including her Uncle Dan Dennis, who is the senior pastor of Thomas Road Baptist Church in Phoenix.

 

On Friday, we took Lilliana on her first stroll around the neighborhood.  A bunch of lady friends from our church purchased the special stroller.

 

Lilliana made it three weeks in a row to church.

 

Lilliana’s Grandma from Michigan brought her a new preemie dress, socks, and shoes, and she looked so cute in the service.

 

Yes, that pretty little girl can sure turn heads, especially those of the Dennis boys.

 

Rhonda’s doing well, and she is such a good mother.

 Day 28 – 34

Lilliana passed her one month birthday this week.

At her visit to the doctor, she topped 5 lbs. for the first time, weighing in one ounce over the mark.

On Tuesday of this week, Rhonda and I celebrated 25 years of marriage.   Last year, we had planned to be 1000’s of milesfrom Indianapolis on June 14, 2011, but the Lord had a special blessing instead for us.

Lilliana made it to church on Father’s Day, all dolled up in her preemie clothes for her fourth Sunday in a row.

Lilliana’s 5-year-old brother, Ethan, sang a solo with the family in the service.

This upcoming week will be a new test.  For the past four weeks my Mom and Rhonda’s Mom have taken turns staying at our house and helping.  They are now both back at their out of state homes.  Please pray that we (especially Rhonda) will have strength to pick back up to the housekeeping and cooking role. 

God has been so good!  We are thankful for such wonderful and praying friends!

Days 35 – 41

Lilliana passed her fifth week, as we have enjoyed watching her act the part of a baby girl.  Her feeding has increased to 55ml a serving, and she seems to be gaining weight.  Lilliana’s milk is “homegrown” – we are trying to cut out the middle man.

 

She continues to be shown lots of love by her family and friends, especially her big brother, who has started offering other kids their chance to kiss Lilliana.

 This week Lilliana got her first venture to a garage sale with Mom & Dad.  She didn’t show much interest, but that couldchange…

…when she learns what bargains can be found.  On Saturday Russ bought this pretty little dress for 50 cents.

For the fifth Sunday (in a row), Lilliana made it to church.  Each Sunday she seems to stay awake a little longer for the service.   God has been so good!  Thank you for all your prayers!

DAY 42 – 49

 

 

 

Lilliana Joy is almost seven weeks old.  This past week we faced several challenges, the most serious dealing with her feeding.  She began to gag at the 55 ml level feeding every 3 hours.  We have cut the serving in about ½ and now we started feeding her every 1½ hours instead. She seems to be doing well with it, but her parents are having a difficult time adjusting at night to the all night feed.

Lilliana’s brother #1 – 23 year-old Russ III,preached at Waverly Baptist Church for the July 4th Sunday service.  He is in his last year of seminary out in Iowa, and also on staff at a church.  Lilliana was in attendance for the message. The sermon may have hit a tender spot, because for the first time in church, Lilliana made a brief cry.

After the service, Russ III came to Lilliana’s pew and gave his sister personal attention and comfort.

On Monday, all the family had a wonderful day of celebrating.  I took the guys and Ethan for outdoor activities and later to see the grave of George Washington’s Drummer Boy (Just up the road at Round Hill Cemetery).  We had a cookout, and later fellowshipped and played games.

At the end of the day, our little girl was all tuckered out.  Even the final booms from the fireworks didn’t seem to arouse her.

I trust that all is well with you and yours on this special patriotic holiday.  Thank you for all your prayers!

Day 50 – 55 (Tuesday- Sunday)

Thank you for all your kindness and support as our daughter now is 7 weeks old.

As we continue to enjoy little Lilliana Joy, small accomplishments bring great satisfaction.  This week’s progress may seem insignificant, but it does give us another sign that she is growing.  Our daughter is now officially out of preemie diapers, and into newborn ones. 

From last week, we have continued the smaller feedings every 1½ hours, and this has seemed to work for her (it is rough on the parents).  Pray that we can get this situation changed for the better.

We are thankful for the kindness of friends, our neighbors, our church family, and other Christians.  This little dress was given by a neighbor on Saturday.

Lilliana wore it to church, for her 7th Sunday in a row.  Our little daughter was alert for about half the time, and slept the rest.

We were reminded again of the seriousness of the T-18 condition.  My brother is a senior pastor in Phoenix at Thomas Road Baptist Church.  He told me that since Lilliana was born, they have had two missionary families that each had T-18 babies and both passed away in less than 2 days.

We are grateful to the Lord for the sweetness of this little girl, and we rest in His goodness.  Thank you for all your prayers!

Day 56-62

We have enjoyed another wonderful week with Lilliana Joy.

Sunday marked Lilliana Joy’s two month birthday. She made it “to church on time”, and she remained in the service for the 8th straight week.

This week was filled with doctor visits on Wednesday, Thursday, and Friday.  On Wednesday at Riley Children’s Hospital, we received a developmental ped. doctor, and Lilliana got her first chance in baby scrubs. 

Lilliana was also weighed and measured that Wednesday.  She had gained over a whole pound to 6 lb. 10 oz.  We were very happy!

On Friday we were back at Riley, this time with the heart division.  Lilliana had an EKG, and then we had a consultation with a heart specialist that is now part of Lilliana’s “health team.” Lilliana has several heart issues the greatest being her large VSD (hole in the heart).  This is a great concern, and the doctor plans more tests next month.  The doctor was surprised that Lilliana did not exhibit outward signs of cardiac failure.  The doctor went on to talk about the pressure in little babies lungs, and mentioned how that even the specialists do not know how these changes occur in the lungs.  I smiled and commented to the doctor, “The Bible is so correct when it says we are fearfully and wonderfully made” (Psalm 139: 14).  The doctor nodded in agreement.

After a busy heart exam, there is nothing that satisfies the kids like hanging out with Ronald.

Both of us have caught Lilliana “cooing” a little bit, and that was special.  We are still feeding her every 1½ hours, but we hope with the support of the “health team” this will change this week. 

Let me say that without the help of our vital “prayer team” we would not have arrived at two months.  God is so good, and you are all so kind.  Thank you for your prayers!

Day 63 – 69

Each day holding our daughter is very special.

Nine straight weeks to attend church, and Lilliana stayed in the auditorium for each service.  We are also getting requests to visit some of the churches that are praying for Lilliana.  Besides the privilege of worship, we have had a number of recent blessings:

This week we have enjoyed visits from friends and relatives.

Also, the strap for Lilliana’s cradle swing arrived, giving us the use of another item that seems to calm her.

Another blessing this week, is the arrival and training to use the feeding pump.  Instead of feeding every 1½ hours and having the dose go in by gravity (quicker), we can now fill up a bag of “Mommy” milk, and the pump will evenly disperse it over a 4 hour period.  This has given us more time control.

One other very small treat, was this week we first noticed the eyelashes on our daughter.  They are small, thin, but curled upwards.

One serious consideration is that on Friday, Rhonda noticed a little swelling in Lilliana’s arms and legs.  We were told this could happen because of the VSD (hole in heart).  On Saturday we started her on Lasix, which appears to be working.

Thank you so much for your continued encouragement and prayers!

Day 70 – 76

We continue to rejoice in the Lord’s goodness.

We have enjoyed another great week with Lilliana Joy!  Parents and baby are getting regulated with the miniature feeding pump, and on a couple of nights we even found ourselves sleeping 5 hours in a row (at different times)!

We have watched Lilliana focus more this week.

Her eyes are a pretty, soft steel blue.  If her eyes remain that color, she will be the first Dennis since Russell Dennis Sr. to have blue eyes.  He always hoped for a little blue-eyed baby. 

This week Lilliana has had more of her “fussy” periods during the day.  Even little, big brother aids in the comfort.  Another help, is our nurse’s visit from IU Home Health Care (Not Hospice).  Every week, a nurse will stop by to evaluate and check on Lilliana.  When she was weighed she only had gained 2 oz., but still she had gone in the right direction.

Ten weeks in a row at church!  How many folks can match that record?  Lilliana also attended her first church dessert fellowship.  She ate nothing off the table.  She’s waiting for her calories, second hand!

Thank you for all your prayers.  Many write, call, or just tell us that they are praying, and that is encouraging.  Your prayers mean so much!  We recently heard from a T-18 Mom whose son has a large VSD (hole in heart), and he is 28 months.  God is still the Great Physician!

 

Day 77 – 83

Dear Friends:  We have enjoyed another wonderful week with Lilliana Joy.

It is official! Lilliana is a 7 pounder!  She was weighed again on Friday and had gained 4 oz. to 7 lb. 1 oz.  Gaining weight for a Trisomy baby is a blessing!  Her little legs are getting cubby, as she models her handmade “Sunday socks.”

Lilliana enjoyed her new Bouncy Seat that came in from Michigan.  Thanks!

Eleven straight weeks at church, but this time we were at Berean Baptist Church in Greenwood where I ministered all day. 

The Lord gave us a wonderful week.  We have talked with many encouraging folks, and we are becoming proactive in Lilliana’s life.  Please keep praying that the Lord will give us direction into the areas that we should pursue for our little daughter’s health needs. 

You are all a blessing.  Your prayers and support help sustain us during these challenging days.

 Day 84 – 90

Dear Friends: We thank the Lord for all His blessings.

As they might say at the Post Office – we enjoyed a 64¢week ?.  In the last 7 days Lilliana gained 2 oz. in weight, which is not much more than an overstuffed envelope.  Still that is a gain, which is a positive with a T-18 baby.  Also, Lilliana made it to all three church services this week, which is her first.

Lilliana received a new pink baby tub, and she liked the hammock style sling.  Her eyes seemed to say, “Great shampoo.”

“Nice manual dryer, but…”

“…Poof!  I can’t do a thing with my hair.  Where’s the hairdresser?”

Here is the next big prayer request.  On August 26th, Lilliana is scheduled to have her second Echo Cardiogram (sonogram of the heart) which will show the extent of her heart problems.  Her original Echo test was taken at 3 days old,and showed several problems including a large hole in her ventricle (VSD).  It would be a miracle for the hole to be healed, and God would get all the glory. The doctor told us last month, that these large holes do not heal by themselves.  However, the doctors and nurses have been pleasantly surprised with the countenance of Lilliana.  We will continue to trust the Lord.

Thank you so much for all your prayers and kindnesses.

 In Christ,

Russell Dennis, Jr.