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.

Effects of surgery

His tummy is almost flat!

August 3, 2010
Well Aiden is 13 days old today and already has been through five surgeries.  Aiden is now requiring 100% O2 and is requiring a vent pressure of 28.   His lungs are not handling all the pressure that has come from the reduction of the omphalocele so he is relying alot more on the ventilator.  The NICU doctors are concerned about continuing with surgery but the surgeons think all will be better once his abdomen is completely closed.  They think they will be able to perform the final closure on Friday.  Aiden has also started retaining fluid due to the increased pressure  and from organ manipulation during the surgeries.  His legs are so swollen and it looks so painful.  He can't even open his eyes because they are swollen shut.  Craig and I are so scared but are trusting in God to get us through.

Surgery Begins

After the very first surgery



 Aiden's first surgery was on July 23, 2010.  The surgeons decided to do gradual closure of the omphalocele.  The process involved multiple surgeries to slowly push the organs into his abdominal cavity and allow skin to be stretched over the organs.  During the first surgery they attached a mesh type material to both sides of the abdomen.  The mesh was sewn into place and then stretched over the organs.  The mesh put pressure on the organs thus pulling them into his abdomen.  Every other day the surgeons took Aiden back to surgery to cut the mesh and sew it tighter thus applying more pressure on the organs and pushing them in a little further.  The staged surgery process was important because of the size of Aiden's omphalocele.  If all the organs were pushed in during one surgery it would apply to much pressure on his lungs and he would not be able to breathe. 

After one of the reduction surgeries. Slowly the omphalocele is getting smaller as it is pushed in.





Aiden Arrives

Aiden was delivered by C-section  at 38 weeks.  Aiden was born on Wed. July 21, 2010 at 1014am.  He weighed 6lbs. 7 oz. and was 18 1/4 in. long. Immediately after he was delivered he was whisked away to NICU and placed on the ventalator due to complications with breathing.  I didn't even get to see him or hear him cry! Craig got to take a few pictures of him right after birth and then later after he was stable in the NICU Craig got to see him. The pediatric surgeons came and evaluated his omphalocele right after birth.  They also wrapped it tight with moistened gauze that remained  until his first surgery.  I finally got to see my  little boy around 9pm that evening. 

Aiden's Story Begins

First ultrasound picture showing the omphalocele.

We found out on March 1, 2010 at 18 weeks gestation via ultrasound that our baby had an abdominal wall defect.  My OB doctor quickly referred us to Jackson, MS for further testing which included an amniocentesis, fetal MRI, and a fetal echocardiogram. The tests revealed that Aiden had a giant omphalocele that contained the liver, stomach, and some of his intestines.  The rest of the pregnancy involved frequent tests evaluations in Jackson. We are so thankful we were referred to University Medical Center in Jackson. All the doctors and nurses have been wonderful.   

Fetal MRI of the omphalocele