Party Time! Maks River is 1

The past year has flown by.  It has brought so many amazing blessings.  We were so honored to share the celebration of Maks River's first birthday with 75 of our closest friends and family.  His party was a HUGE success!  Although it was hot we all enjoyed the evening of celebration.
We asked that his guests donate to Arkansas Children's Hospital NICU instead of bringing gifts.  It seemed only appropriate to bless other children and give back to a place that is still helping our son so much. I am happy to say Maks raised $1,000 for ACH! Of course he got lots of gifts also.
   Maks has been working so hard at walking over the past couple of months.  Last night he took his first steps alone! I am so proud of my baby boy! His strength and determination over the past year is something to marvel at. He can pull up with no effort and is getting braver and braver with letting go to walk.  I think he has decided that crawling just isn't for him.  His scoot works just fine while he is perfecting his walk. His love of food is still growing.  Last night he tried purple hull peas, and of course loved them.  Corn on the cob is his latest favorite! Almost all of his birthday pictures have him holding his cob tight the entire night!
   Update on baby girl Charlotte:  Charlotte will be arriving (full term) Monday, June 23!  She will be born in Little Rock just as Maks was.  We know that she is perfect and healthy.  I am so honored and blessed to have shared this journey with Charlotte's mommy, daddy, and big sister.  I can not wait to see the great things Charlotte and Maks will do for the Glory of God one day! I believe their testimonies alone will change people's lives!
  Thanks again for all of your prayers for Maks and Charlotte! They are greatly appreciated by all of us.

Now for the party pictures!!


Family shot

 He did eat some cake

Eating corn while posing

Eating an after-cake oreo

The welcome sign

Maks is 11 months old!

     My baby boy is growing and changing so fast.  He is pulling up and walking around anything he can hold on to.  He has figured out a sort of scoot to move around on the floor.  He talks non stop....and talks LOUD! He is developing quite the personality now.  He knows how to get exactly what he wants, and if you don't give it to him exactly when he wants it....he gets very angry.  I am enjoying watching his personality grow and develop.  I hate to say it, but I think he may have my temper, but he is such a sweetheart.  You can not get mad at him.....all I have to do is look at his beautiful face and I melt.
     The boy can definitely eat! His new favorite food is corn on the cob.  He loves fried squash and potatoes too.  He is gonna love good ole country cookin. Good thing! I have just started introducing him to whole milk this week.  He seems to be taking to it great.  He don't care for it straight out of the frig, but after it warms up he loves it.  He has not encountered any trouble with sippy cups.  He can drink out of any kind including the hard spout ones. I am just so proud of him for everything.
     We just got home from our beach vacation to Destin, FL.  He absolutely loved it! He loved the sand.  He loved the waves and ocean.  He loved the pool.  He seems so comfortable in any situation.  We drove so it took us between 11 and 12 hours.  He was wonderful both ways.  We only stopped a few times, but he just enjoyed cruising.
     I am very busy planning the BIG barn party! His first birthday is going to be great.  I can not wait to celebrate with him, our family, and friends.  This year that was supposed to be so difficult and trying has been such an amazing blessing.  He is so perfect.  Our few days in the hospital are just a brief, faint memory now.  His progress is indescribable.  People who see him for the first time are still speechless sometimes.  They just studder and don't even know what to say because they're so stunned at how normal he looks.  I think in their minds they see a tiny baby with lots of problems.  He is FAR from that!
    Update on baby girl Charlotte......She is still holding strong in her mommy's tummy.  The doctors are keeping a close eye on her, but she continues to get good reports.  Our God is faithful and keeps his promises! Charlotte will be making her arrival soon so please keep her, Danna (her mommy), John (her daddy, and MaryScott (her sissy) in your prayers.

Look at my belly at 11 months!

 So happy about his new shirt

                                   



                                       Birthday invitation photo

Riding in his wagon

Feeling the water

                                     



                              Our family beach photo

His beach photo session

Beach Bum

 

 I am very excited to post birthday pictures next time!

10 Month Pictures

10 Months

Playing with Mommy

 Cruisin in the pontoon

Lake Time

He Loves Corn 

Just playing on the boat

Enjoying some pool time

Maks is 10 Months Old!

     My Maks is 10 months old!  I have already started planning his first birthday party.  I am so excited to celebrate this milestone with him.  He is changing everyday and growing so fast.  I think he will make many advancements in the next two months.  
     He wants to move around so badly.  He constantly squirms to get down, and then gets mad because he cant figure out how to go anywhere.  He still has no interest in crawling.  His pediatrician said they do not even consider crawling a milestone, so I am not too concerned.  He is trying to pull-up, and loves to stand and play at the couch and ottoman.  He is a mad man in his walker!  He can take your ankles out if you take your eyes off of him for even a second.  Maks loves chasing his sissy and cousin, Knox, around.  He even catches them sometimes.  Marley has been amazing with him.  His entire face lights up when she plays with him.  We are truly blessed with two happy children!
     His tummy has not changed much lately.  I don't know if it has gotten as small as it is going to, or if it is just taking longer now that everything is back inside.  The surgeons told us that we do not have to bind him in any way, so we have not been.  I am thinking that this may be some of the reason why the progression has slowed down.  I took a pair of "spanx" and cut the legs out of them.  I put one of the sleeves on him occasionally to keep his t-shirts from riding up.  The sleeves are very soft and don't seem to bother him.  I am considering putting a sleeve on him more often to see if that will speed up the process of flattening the omphalocele.  It only makes sense that the more pressure applied, the faster the omphalocele will flatten.  With it being summer time, I will have to make sure the extra layer of clothing don't make him to hot.
     Maks finally has two little teeth shining through on the bottom, and he knows how to use them.  He loves food.  Some of his favorites are potato salad, baked or refried beans, spaghetti, and all veggies.  He even ate some of my hamburger last night...tiny pieces of course.  I am hoping Maks isn't a picky eater like his older sister.
    We have taken Maks to the lake twice already and he loves to swim in the backyard with Marley.  He kicks and splashes the entire time he is in the water, and cries when we take him out.  He loves to ride in his uncle Michael's ski boat, although he usually goes to sleep while riding.  I am so happy to have two water babies because I love the water myself.  My husband and I just spent the weekend at the lake with the kids to celebrate our 10th anniversary.  I cannot think of a better way to celebrate our time together than spending it with our two greatest accomplishments!
    Update on Baby Charlotte.... Her mommy, Danna, is reporting to her doctor in Little Rock this morning.  She was told to bring a packed bag and be prepared to deliver Charlotte early.  I am standing firm in agreement with her that God will keep his promises to protect and heal.  We believe that God will work through the doctors to do what is best for her and Charlotte.  I know in my heart that God has big plans for Maks and Charlotte.  They will both have such moving testimonies that people will not be able to deny God is a healer! Please keep Charlotte and Danna in your prayers.

9 Months

I am running behind on my 9 months update on Maks.  I have been crazy busy.  He is growing and babbling non-stop! He loves to talk about as much as his sissy does.  This could cause a power struggle in future between them.  Maks is sitting up perfectly anytime and any place.  He can lean way over and bring himself back to center with no problem. He loves his walker! He has figured out how to move forward so he is rolling all over the house.
Learning to crawl is still a work in progress.  He dislikes being on his tummy so much that he don't spend as much time there as he should.  While he is there he can push up with his arms and get on his knees.  He rocks and cries until I pick him up.  He can stand up and hold on to the ottoman for a while unassisted.  I am thinking he may skip the crawling thing.  His sissy did, and she is just fine so I am not worried about it.
As far as the omphalocele itself goes, it is still healing. Praise the Lord!  It amazes me every time I look at him.  The bigger he gets....the smaller it gets.  We no longer wrap his belly.  He is as free as a bird and loves it!  I can only compare the wrap to wearing a girdle.  Who would enjoy that 24 hours a day? There are no restrictions now that the omphalocele is completely covered with healthy skin so he is just enjoying life.  Bath time is his new favorite time of the day.  He loves to splash water all over me and the floor.  We took him swimming in an indoor pool and he really enjoyed it.  I think he is going to be a water baby like his sissy. YAY!! Look-out lake...here we come this summer!
We were told early on that, due to the omphalocele, he would be an irritable, unhappy baby.  Boy were they wrong.  He is so happy and peaceful.  His smile lights up the room, and he is a delight to be around.  I can not tell you how many times people have commented on how happy he is and what a good boy he is.  The credit for that goes, first, to my God for answering our prayers.  We prayed every night that Maks would have a kind heart, gentle spirit, and be full of peace. The rest of the credit I give to my wonderful cousin, Kaitlin, who has been coming to our house to keep Maks (in his comfort zone) ever since i went back to work.  She has been a blessing.  Maks loves her with all his heart.  His smile says it all when she walks into the house each morning.
Like all babies, Maks has been getting his fair share of bumps and bruises.  He has taken a few spills by learning to pop himself out of his Bumbo seat.  He has also learned to scoot across the bed at nap time, which ended in a fall from my bed.  These are things that all children do, but it still scares us to death!  No major injuries though, just a few missed heartbeats by us.
Maks is just a normal baby boy.  He is growing and developing perfectly.  He is over 20 pounds now.  He has the first two bumps on his bottom gums that will soon have teeth peeking through.  I could not be more proud to have been chosen to be his mommy.
I have a short up-date on, Charlotte, the baby girl due in August with an omphalocele.  She is healthy and strong.  She is developing perfectly in her mommy's womb.  She, like Maks, has no other problems.  Please continue praying for her and her amazing parents!


Easter Pictures

9 Months and Lovin it!

Riding the carousel at the zoo

Maks and his buddy Ace

8 Months and Counting

This month has been full of excitement and new experiences.  Maks was 8 months old on March 5th.  He is doing a great job sitting up unassisted, and is like an octopus with 8 arms! He can grab anything close to him and of course it goes directly into his mouth.  Still no teeth in there, but i know we are getting close.  He absolutely loves being outside.  It seems that is where he prefers to be.  He has also learned to play and splash in the bath tub, so bath time is a much wetter experience these days! A new and wonderful chore we have is washing his belly! We have been able to get it wet for a while now, but getting to lather it up and truly wash it is a new, exciting adventure.  He still seems to not enjoy being on his belly for any extended amount of time.  I do not believe it hurts him in the least.  I think since he wasn't in that position very often early on that he just doesn't enjoy it.  I take total blame for that because I didn't put him on his belly as often as i should have.  It seemed so uncomfortable to him in the beginning, and I didn't want him to be uncomfortable at all.
His smile is so bright and full of life! He is one HAPPY boy! His comfort zone is at home.  He does travel well, but it is very obvious that he is a homebody.  We went to the zoo today, and he loved it.  He got to ride a carousel and was mesmerized by it.  He loves coming to my softball practices and watching the girls.  Yes, he is a ladies man!
Last week we learned that a coach friend of mine and his wife are expecting a baby girl with an omphalocele.  It floored us for many reasons.  Mostly because we had never heard the word omphalocele before Maks.  Now not only did we have to go through this trial, but so did a couple we know.  I am so thankful that we can share our experiences and victories with them.  Baby girl, Charlotte, will arrive this summer.  I ask all of you to say a special prayer for her and her parents.  My prayer is that she will fly through her healing even faster than Maks.  We are very excited to meet with Charlotte's parents, John and Danna, this Wednesday.  I know meeting Maks River and seeing his contagious smile will make them even more excited to meet Charlotte! She is a warrior just like Maks!!

Latest Check-up

We recently took Maks for a check-up with his surgeons.  They had not seen him in 3 months.  They were so surprised by his progress.  From our previous appointments we had understood them to think he would need two separate surgeries, one to correct the omphalocele and one to close his abdominal wall.  After our last visit.......they now only predict one surgery later on to remove scar tissue and create him a belly button.  That was amazing news to us and such a blessing!  All our little man has to do is keep growing and getting stronger.  Maks turned 7 months old on February 5th.  He is rolling over and starting to sit up on his own.  his favorite word is DaDa.....which does not make his MaMa very happy!  He  loves all baby food and is warming up to juice. He is such a happy, pleasant baby.  God is continuing to answer our prayers!

From The Beginning....

     Maks River was born on July 5^th, 2011, but his story began long before that day.  At my routine 20-week ultrasound, we were told we were having a BOY! We were over the moon excited.  They took us into an exam room to wait on the doctor. As the doctor entered the room with a huge medical book in her hands, I knew something was wrong.  She flipped to the page entitled “Omphalocele”. What I heard and saw after that took my breath away.  Our baby’s liver and small intestine were outside his body covered by a thin membrane.  We were speechless and confused.  On the ride home I began to ask “why”.  I had done everything right.  I was healthy.  I  didn’t drink or do drugs.  I exercised, took vitamins, and so desperately wanted this baby.  My husband stopped me and reminded me that it didn’t matter why; we just had to have faith that God would make it right. From that point on we turned all our focus on God.

We were told to be prepared for heart defects, under-developed lungs, digestion troubles, genetic abnormalities, pre-term labor, and lots of other possibilities.  I read from a book titled, “ Prayers and Promises of Supernatural Childbirth” every night.  This book put words to my thoughts to speak over my baby.  My husband, our daughter, and I read one certain passage every night.  It said, “ your heart is strong and healthy; your lungs are strong and healthy; your digestive system will function properly; your bones are strong and healthy; your vision is perfect; your hearing is perfect….and many more promises.  It was important to me to have my daughter speak health over Maks.  It built all of our faith a little more every night.  Our families rallied and built a wall of hope and support around us.  We were bombarded with prayers and encouraging words from the very first day we found out about the omphalocele. These prayers and encouragement threw a wrench in the devil’s plan.  We drew amazing strength just knowing the incredible number of people praying for our unborn son and us.  The devil expected us to be so weak and give in, but we are winners.  Standing firm on God’s promises, we did not accept defeat!

Realizing we had a long 20 weeks ahead of us with lots of obstacles, we decided to take one battle at a time.  We believed God for good news on each visit and good results for each test. I was referred to UAMS in Little Rock, AR for more extensive testing.  In the following weeks we underwent several ultrasounds, an amniocentesis, a fetal echocardiogram, and genetic counseling. We spoke only positive words over our unborn son.  As the appointments and tests came, they were all followed by good news and positive results. Maks had an isolated problem.  It was not accompanied by any other defects or genetic abnormalities. (Praise the Lord)  Maks broke all the rules and statistics for omphaloceles

When people would get their courage up to ask us questions about Maks River’s prognosis, we would always respond with, “he is PERFECT”.  This confused most people.  They could not figure out how we could be so happy. In their minds our son had a problem, and we should be devastated and feeling sorry for ourselves.  We always had a smile on our faces and positive words to share about his development. 

Maks arrived on July 5^th, 2011.  His cry was the most beautiful sound I had ever heard.  The Angel One team from Arkansas Children’s Hospital took him from the delivery room and stabilized him.  They brought him to see us before transporting him to ACH.  They are an amazing group of men and women!  They took Maks to the NICU.  His daddy and other family members went with him.  I did not want him to be alone.  It was very hard for me to stay at UAMS while my baby was being treated at ACH. Forty-eight hours later I literally ran out of the hospital and to his bedside.  Emotions flooded me when I saw him. 

We had been prepared for Maks to be taken directly to surgery to repair the omphalocele.  His surgeons decided to wait for his body to grow and let his organs fall naturally back into place.  This method is called “paint and wait”.  They “painted” the omphalocele with silvadene cream once a day and wrapped it with gauze. This decision was not by chance… I had been praying daily for all the doctors to be lead by God in caring for Maks.  I also prayed for them to have wisdom when making decisions about his care.  We got wisdom for sure; Maks River’s neonatologist was the founder of the NICU at ACH!  That is not luck. That is God’s FAVOR!

            

     The medical team made a plan for Maks and he marched right through it with ease.  His total stay at ACH was 20 days.  That is miraculous, and the doctors reminded us of that daily.  His progress went as follows:

July 5^th - Born 7lbs 7oz  20”

July 9^th - Taken off the vent

July 10^th - Arterial Line was removed and we held Maks for the first time

July 11^th - Taken off all supplemental oxygen

July 12^th - The drain tube was taken out of his stomach

July 13^th - He had his first breast milk (5ml)

July 24^th - PICC line was removed

July 25^th - We took Maks HOME!

            When we took Maks home there were many responsibilities that came with him.  We were taught in the hospital how to change his dressing, and we did this daily when we got home. He had a hard “helmet” that covered the omphalocele when he was in his carseat. He had to take vitamins and a reflux medicine once a day.  All in all his care was minimal and we took to it with ease.  I feel like Maks River’s healing really began once we got home.  He was eating only breast milk, which I think is a huge benefit to his growth and development.  He was gaining approximately 1 oz a day.  The pictures show his progress from birth and every month after.  In the hospital you could see through the membrane that covered his organs.  As he healed, the membrane became thicker and stronger.  The silvadene caused the skin to scab over.  Then when the scabs came off his skin was healthy underneath. The size of the omphalocele did not change very much the first couple of months. Then, all of a sudden, it began to shrink very quickly. You can see from the pictures how the shape and texture changed also.  After 4 months, we began using a smaller amount of gauze.  Then by 5 months, we could wrap his belly almost completely flat.  It has been amazing to watch his body absorb the omphalocele.  I always say, “If you don’t believe in God, let me introduce you to my son”. 

Today Maks is a strong, happy, and healthy 6-month-old baby boy. He has not been delayed in any aspect except rolling over. The bump made it difficult for him to get all the way over.

           

     We continue to go back to ACH for routine appointments with his surgeons.  They are always amazed and encouraged by his progress.  They have said he will have surgery to make him a belly button before he turns 1.  All the praise and glory goes to our heavenly Father who makes all things possible and keeps his promises!

 To be continued…………

Monthly Progress Pictures

Maks at One Week Old
The Omphalocele housed his liver and small intestine.
There was a thin membrane holding everything in.

Maks at One Month Old
We were painting the omphalocele with Sivadene cream and wrapping it daily.

Maks at Two Months Old
Still painting and wrapping
The omphalocele had begun to change shape and skin had started growing.

Maks at Three Months Old
Still painting and wrapping
You notice a difference in shape and size here.

Maks at Four Months
Still painting and wrapping
The omphalocele was drastically smaller.  

Maks at Five Months
Still painting and wrapping.
We were able to reduce the amount of gauze we used.

Maks at Six Months
We were using a tiny amount of Silvadene cream and wrapping
with a small roll of gauze.  All of the liver and intestines were inside at this point.
What is left is just extra skin.