16 months



Aiden's Daycare Picture

Aiden is growing!  He now weighs 17 lbs 2 oz. !! (He can finally wear 12 month clothes!) While this is still very small for his age it is a steady weight climb and we are thankful!  Aiden is still struggling with feeding issues.  He still eats very little real food or baby foods.  He will take a bottle or drink from a cup sometimes, but we are still relying on the tube for most of the feedings.  His pediatrician recently changed his formula which has also been an adjustment.  Aiden was eating much better before his ear surgery. The surgery seems to have caused a set back.  We also had to stop speech therapy due to insurance changes and the out of pocket expense.  We are hopeful that we can get him back in speech therapy soon.  He is undergoing evaluation and will hopefully start having therapy through the Early Intervention Program.  This will be great because his speech therapist will come do therapy with Aiden at his daycare.  Until then...we continue to offer Aiden any and everything that he shows interest in eating.     

 Aiden is very inquisitive and is getting into everything.  He still likes to "booty scoot"  as we call it.  He is pulling up on any and  everything and stands very well on his own now.  He is still not walking yet.  He will take 3-4 steps but that is all so far. He now has 10 teeth!!!  He cut two new ones in the past week!!  Aiden is a chatter box and loves to sing!  He also likes trains and trucks.   Aiden keeps us laughing and is the joy of our lives.  We are so very blessed!!! 

Playing in the leaves!

As Christmas time approaches, I am reminded of how sick Aiden was last Christmas.  He was struggling to keep any of his feedings down.  We are so thankful that he is no longer vomiting and struggling with reflux.  Although he still has feeding issues...he is no longer miserable at feeding time.  We continue to be blessed and thankful to God for everything he has brought Aiden through!!













October

Aiden really enjoyed Halloween this year!  We attended a fall festival at our church instead of trick or treating.  He loved all the activities and seeing the other kids.  He is very sociable.  His favorite thing about Halloween was the pumpkins.  He loved them!  Every time he saw one he would point and try to say "pumpkin."  Here are a few pictures from Halloween and our trip to the pumpkin patch.

14 months

Aiden has had a busy past couple of months.  Aiden started daycare in August and that was a big adjustment.  He really has enjoyed meeting his new friends.  He loves his teachers and for the most part has adjusted really well.  Aiden has learned so many new things in the two months since he started daycare.  He is really trying  hard to learn to walk.  He can stand well on his own and has taken a few steps on his own!  Just this week he has learned to pull up.  Aiden has also learned to scoot on his bottom.  It is so funny to see him scooting around! Although he has crawled a few times he would much rather sit up and scoot around.  We have had a few set backs with his weight since August.  He got a stomach virus only two weeks after starting daycare and although we maintained his feedings through the tube, he still lost 1/2 a pound.  Then two weeks after getting the stomach virus Aiden got bronchitis and ear infection in both ears.  We have been treating the ear infection for two months and still are struggling with ear aches and fevers.  The continued infections have made feeding a struggle.  Aiden has good days and bad days with eating.  When he is not feeling good he refuses to eat anything and will not take a bottle.  We are very thankful to have his tube during these times.  Prior to the stomach virus he was really doing well with eating baby foods and some table foods but since then he has not shown as much interest.  We continue to struggle with getting him to eat.  He has not been as receptive to his therapy and we just hope once he is feeling better he will begin to eat better. Despite the struggle with eating Aiden has gained back the weight he lost   He is still well under weight and will probably continue to be for a while. 

Over the past few weeks the ear doctor and pediatrician decided that since he has not improved despite several different antibiotics that he needs tubes.  His surgery is scheduled for in the morning.  Since Wednesday, Aiden has been running fever and struggling with ear pain again.  We are hoping we can keep his fever down so that he can have the surgery in the morning.  We really hope he can get the tubes and that they will help!  

Roll Tide!  Aiden loves football :)

Aiden's First Birthday

      

    On July 21st Aiden celebrated his first birthday!!  We had his party last Sat., July 23rd at our house with all of our family and a few close friends.  The theme of the party was Mickey Mouse, which is Aiden's favorite cartoon. He had so much fun playing with his cousins.  It was such a blessing to celebrate such a special day and reflect on what a difference a year can make. This time last year, Aiden was just finishing his fourth surgery.  His abdomen was not even closed yet and he was really going through his toughest days.  We praise God that now he is doing great!!! 

        Aiden now weighs almost 15 lbs and is 28 inches long!   He can stand well with minimal support but is still trying to learn to walk.  He is almost crawling and getting much more comfortable on his belly.  He loves books, to play ball, and being outside.  He also loves to swim at his Mimi and Pop's pool.  He is very inquisitive and points at everything he sees.  He is still in therapy to help with his oral aversion.  The therapy is really helping!  In the past week, Aiden has started to eat more baby foods.  His favorite are green peas, sweet potatoes, and apples.  He also loves any of the puffs that he can feed himself.  We are still working on teaching him to drink from a sippy cup but  for now he is mostly still taking all bottles.  He has been taking more of the bottles by mouth and we are not having to use his tube quite as much. Another big change is that we have just enrolled Aiden in daycare.  He will be attending the First Methodist Early Learning Center.   They have had a few other children with special health issues and even previous experience with tube feeding a child.  We are anxious about this change for Aiden but we think he will learn a lot being around other children his age.  I'm very sad to leave him but know he will be in great hands.  It has been a long, hard first year for Aiden but he made it through by the grace of our Mighty GOD! We are very thankful to all of our family and friends for their tremendous support throughout Aiden's first year of life. 

Aiden playing ball at his party



Aiden's new favorite toy



11 months

On 6/21/11 Aiden was 11 months old.  As I am writing this I can't believe that in just a few weeks my little baby will be a year old.  I can't believe the year has went by so fast...it is surreal! Aiden is getting bigger and at the last doctors visit was over 14 lbs.  On average he is now gaining about a pound a month!  At this rate he should be within the 5th percentile on the growth chart before long. That is our goal! He now has 6 teeth and boy can he bite!!  We are still using his tube to bolus every feeding.   Aiden has started speech therapy to help him learn to eat.  He is taking his bottle better and is learning to use a sippy cup! It is still a slow process in trying to get him to take any cereal or baby foods.  It is not that he dislikes the foods he is just not receptive to having anything of texture in his mouth.  Therapy has given us some new techniques and they are helping.  Aiden can stand and can walk well in his walker but he is still not pulling up on his own.  It will come in time I guess.  He still scoots or rolls to get to where he wants to go.  He has started to lay on his tummy but is still not interested in crawling.  Everyday we are still so blessed by the progress Aiden has made.  It is amazing how far he has come in a year.  He is doing so much better than he was doing even 6 months ago.  He is the happiest baby and most people that didn't know his story would never know he was any different.  We still thank God everyday for his blessings of healing and love! Every time we look at Aiden we have a precious reminder of what a GREAT GOD WE SERVE!!!

Fetal Medicine Center Reunion at UMC

Aiden and Ms. Phyllis-one of the wonderful nurses at UMC

Last Saturday we attended the Center for Fetal Medicine Reunion in Jackson, MS.  The Fetal Medicine Team was there for us from  the start of Aiden's omphalocele diagnosis.  The Center for Fetal Medicine was just getting off the ground when we found out that Aiden was going to be born with an omphalocele.  We were one of the first few patients to go through the program and be treated by the Fetal Medicine team.  We are thankful that Dr. Lietchy came to Mississippi and started such a wonderful program.  All the doctors and nurses were so wonderful throughout Aiden's journey over the past year and we can't thank them enough for being there for us.  The state of Mississippi is lucky to have such a great program! It was so great to take Aiden back to visit with all the nurses and doctors that have cared for him along the way.  We appreciate all they have done for our precious little boy.

                                               Aiden and his buddy Carter

Two of God's precious miracles!!

(They were born about a month apart and were in the NICU together.  We hope they are lifelong friends.)

Aiden's first beach trip

Aiden's first time at the beach was so much fun! 

He loved playing in the sand!  He was a little bit scared of the waves and ocean but he loved the pool. 

10 months

Showing off his new teeth!

Aiden is now 10 months old.  He weighs over 13 lbs and is growing well!  Unfortunately, due to his teething we have had a slight set back with his feedings. We are still using his feeding tube every feeding.  He does not like feeding time at all.  He has been taking less of his bottles and does not show any interest in his baby food.  We have tried getting him to take a sippy cup but it only makes him gag. Which is a whole other issue. We are so thankful he has the feeding tube and we are hoping that this is only a minor set back.
Aiden is still not crawling but has learned to scoot and roll until he gets to where he wants to go.  He is standing well with assistance and loves walking around in his walker.  He also loves to "talk" on the phone to his Nanny.  Just this week he has learned how to catch and roll his ball.  This is his new favorite game.  We are amazed everyday that we look at our precious boy.  He has already overcome so many obstacles in his short life.  We are so very blessed!

9 Months

Our little Aiden is now nine months old! We took him back to the doctor in Jackson last Thursday and he is finally starting to put on some weight!  He is up to almost 12 lbs!!!! The weight gain has really made him stronger.  He is now finally beginning to sit up on his own!  Aiden has become a little chatter box and he can now say Momma, Daddy, Bye, Hi, and Ba (which is his word for bottle). It seems like he learns a new word every week! Over the past month Aiden has cut two teeth.  He is finally starting to show a little interest in baby food and we finally found a few things he likes (peaches, mashed potatoes, and carrots).  As for the tube feedings... We still have to use the tube each feeding because most of the time he will not finish the full bottle.   Thankfully, we have the feeding tube because it is helping him grow, but it looks like he may have it for a long time.  Using the feeding tube has become pretty normal to us now and Aiden is used to it too.  However, he is becoming more aware of its presence and we do have to keep a watch on him during tube feedings because he loves to pull on the tube. Aiden is such a happy baby now and he loves to be outside! Aside from being smaller than most nine month olds you would never know what a hard six months he had.  One thing is for sure....God has had a mighty healing hand on Aiden and we will forever praise Him for it! We are so blessed!! 



8 months

       It is hard to believe that Aiden is already eight months old!  He is still doing very good since his surgery.  We went back Thursday (3/24) for another follow-up with the surgeon and he is gaining weight!!! He is finally above 10 lbs...weighing in at 10 lbs. 7oz. He has been able to get off all his reflux medication except for one (Prevacid) and the dose of it has been decreased by half! He is still taking his bottles pretty well, although we do have to give some of his feedings through the feeding tube. We have also starting back giving him cereal and some baby foods, but he is still not all that interested yet.  He recently said his first word which was "Momma!"  I was so excited!! =)  He has also learned to wave bye-bye. The surgery caused him to lose some of his muscle strength so he is still trying to learn to sit up on his own, but he is getting close.  We do alot of floor exercise to work on getting his muscle strength back. 

     We would once again like to thank all of our wonderful family and friends for the prayers for our precious boy during the past month.  Although another surgery was not something we wanted Aiden to have to go through, it seems to have been the answer to his reflux problems.  We thank God everyday for his awesome power and ability to heal our little boy.  Just as HE promises God has been with us every step of the way!!

Surgery # 8

 

My sweet boy...always smiling!



 Aiden is now recovering from his eighth surgery.  The surgeons were able to perform the Nissen fundaplication, Ladds procedure, hernia repair, and appendectomy.  Aiden also now has a G-tube.  So far the G-tube is only being used for venting his stomach during and after feedings.  This is necessary because the Nissen made it nearly impossible for Aiden to burp.  We are hopeful that he will continue to take all his feedings by mouth and we will not have to rely on the G-tube.  He has been so tough through it all.  Aiden was in the hospital after the surgery for five days.  We are now home and it has been a full week since his surgery. He has not vomited or spit up at all!!!  Praise the Lord for this blessing. We are hopeful that now he can begin to pack on the pounds :)



His swollen belly and all his battle scars. 

Relaxing and feeling much better.



Seven months

Aiden weighs 9lbs 11 oz.  and is now 27 inches long.  He is still vomiting up a large amount after feedings.    The surgeons have decided that he needs surgical intervention at this point to try to fix the reflux issues.  He is scheduled for surgery on 2/25/10.  The surgeon is going to try and perform a Nissen  Fundaplication procedure that will help eliminate most of the reflux issues.  With this procedure they will take part of Aiden's stomach and wrap it around the lower end of the esophagus.  This will cause tightness and pressure on the esophagus when the stomach is full.  Therefore, Aiden should not be able to throw up.  The surgeons main concern with the surgery is that his liver is right on top of all his organs because of  organ placement during the reduction surgeries.  If the liver is to far in front of the stomach the surgeon will be unable to perform the Nissen surgery.  Thus, they are going to also put in a G-tube.  This will be used for feedings in case they can't do the Nissen procedure.  Along with these two procedures they are going to also try and repair his inguinal hernias, perform the Ladds procedure, and do an appendectomy.  ( The Ladds procedure is necessary to eliminate any possible twisting of his intestines which could cause blockage.  This is a common complication related to malrotation of his intestines from the omphalocele.  The appendectomy is necessary because it is located in a different location than normal also because of malrotation. While the appendix is normally located on the right side his is on the left.)

Six months

Aiden is having a terrible time with reflux despite starting Reglan. He is now on three reflux medications (Reglan, Prevacid, and Zantac) at the maximum dose on all.  Yet he still continues to vomit after feedings.  He now weighs 9lbs. 7 oz., but it was a struggle to get to that weight.  He has good days and bad with his reflux. He has started to dislike tummy time, mostly due to pressure and discomfort on his belly.  He is eating cereal and we have tried a few fruits. He spits out more than he eats.  It is so hard to see your baby so sick just from eating.  He tries so hard to be happy but throwing up would make anyone feel terrible.  We know that something else is going to have to be done because he is struggling so much. The doctors think that medication alone may not fix his reflux issues.  We have started to discuss options of surgery or placement of a feeding tube to help with feedings.  He just can't gain the weight he needs to without further intervention.  Also, he has developed bilateral inguinal hernias from all the vomiting.  This will also require surgical intervention at some point for repair.

Five months

Aiden's first christmas!

 We have had a set back this month.  The erythromycin quit working and his reflux is worse than ever.  He has not really gained any weight since his last office visit in Jackson last month.  The only option now is to try Reglan.  It has some concerning neurological side effects so we are having to watch him close to make sure he does not develope any of them.  Of course, Craig and I are very nervous about this.  We just hope the medication can work and our little man can start to feel better! 

4 months

 Aiden is slowly growing.  His reflux is still a big issue.  We have been reluctant to start Reglan so the doctors have started him on Erythomycin.  It works by forcing his stomach to empty quicker.  So far it seems to be helping.  His weight is up to 9lbs 2 oz. He is developing very well.  He is very bright and happy!

3 months

We continue to go to Jackson every two weeks for weight checks with the surgeons.  They are concerned because Aiden is not growing.  He continues to struggle with terrible reflux despite being on Zantac and Prevacid.  The surgeons  are considering starting him on Reglan which has alot of bad side effects.  We are just praying he can grow and get past the reflux problems.

Month 2 - Coming Home!!

Today Aiden is two months old.  We also got to come home today!!! We are so happy to finally bring our little miracle home! Aiden has gained weight and is taking all bottles.  He still struggles with reflux and vomits after feedings.  He is on reflux medications and the doctors are going to be keeping close watch on his weight.

8/25/10

Aiden was taken off all O2 today.  He is doing well and his lungs are stronger everyday. He is still getting tube feedings  but we are getting to give him one bottle a day. Hopefully, once he starts taking more from the bottle he will gradually get weaned off tube feedings.   He is growing and now weighs 7 lbs 12 oz!

Month One

Aiden had one exhausting first month of life! Already he has overcome seven surgeries. He continues to struggle with his feedings.  He remains on TPN and is having a difficult time learning to take a bottle because of being intubated for so long. Still he has come so far.  We continue to praise God for his progress.  While he remains in the NICU he is now in an open crib and can wear clothes.  We enjoy playing dress up everyday :) Craig and I are still staying in the Ronald McDonald House on Campus at UMC and spend most of our day in the NICU with Aiden.  

Finally Holding Aiden for the First time!!!

August 18, 2010

One Happy Momma!

    
Today the nurses finally let us hold Aiden for the first time.  We were overjoyed!  That was by far the best feeling ever!!

August 17, 2010

Today Aiden was finally weaned off the ventilator.  He is now on high flow O2 per nasal canula.  We are so happy!! Aiden is still only taking 4ml through a feeding tube in his nose.  The surgeons told us he will probably have lots of trouble with reflux and that feeding could be slow. 

Final closure surgery- August 6, 2010

This was Aiden's seventh surgery.  The surgery was for final reduction of the omphalocele and closure of his abdomen.  It was a long two weeks but God was there all the way!  It was amazing to finally see his belly closed and flat! This was a great day!!

Right after surgery..still very swollen.