Aiden’s Update – August 23, 2016


“I believe that God sent you into my life to give me something to fight for, to show there is love in this world, to give me hope and to bring me joy, all the proof in God I need is in you, you are a gift from the heavens.” 


Last week I shared that we were headed to the doctor for Aiden’s weekly blood pressure monitoring and weight check.  The numbers on the scale have been quite the big deal, so we were hoping for a change in the right direction.  We didn’t get the (7) ounces we were expecting, instead Aiden only gained two ounces.  I started to think that although we were hopeful he would pick up more, I realized that he was taking in the exact same amount as the previous weeks.  Although he does not seem to be working as hard anymore with sucking his bottle (after changing the nipple size), we did not make any other adjustments, so I think that (2) ounces is a good representation of what we will see while he is consuming the 22 calorie.  When Aiden was switched to the higher calorie formula, we also received a recipe on how to increase it to 24 & 27 calories.  I asked Aiden’s pediatrician if we could try another increase and she gave me the OK for the 24 calories, which is where we are now.  Aiden did well with the change, but a few days later dealt with constipation, which we believed was due to the formula change.  Our poor little guy had it bad, it was to the point where you could hear him straining, he was clearly uncomfortable, he would cry and when something would finally pass, his little bottom was sore because it was just to firm (sorry if that’s TMI ).  Two of the biggest concerns after babies have their CDH repair, is reherniation (diaphragm opening back up) and bowel obstruction (gastrointestinal condition in which digested material is prevented from passing normally through the bowel). Before consulting with the doctor, we decided to try treating constipation with 100% fruit juice.  The first time it happened we gave Aiden a small amount of apple juice mixed with his formula, it worked great, but he was not a fan of the taste.  Days later it happened again and I decided to try prune juice this time, it worked as well and surprisingly Aiden really liked the taste, I actually had to pace him because he was drinking so fast (really, who likes prune juice 🙂 ).  As a result of the prune juice, Trelas had firsthand experience with a leaky diaper, poop up/down/all around the onesie and it even got on his pants (LOL)….a full bath was immediately ordered.  Although the prune juice worked great, tomorrow I will still discussed this with his pediatrician to determine if it should be treated as constipation, if something needs to change with his formula or if an additional evaluation needs to take place to rule out a more serious issue.  Aiden’s anatomy is a little different, because of the bowel placement in front of his stomach (which was one of the reasons why I was originally against a G-tube for him).  This is reason for us to pay close attention to situations as this and rule out more serious issues of concern.  This is all a precaution, which is something we will experience from time to time, but ultimately I believe the little guy is just fine.  On a much brighter side, Aiden’s blood pressure was the best it has been since we have been home.  I was beyond excited about this progress!!!  He’s still taking amlodipine (mediation to treat high blood pressure), but I am continuing to stand in faith, praying and believing that he will be able to come off this medication one day soon.


Although preventive measures were in place, I think Aiden picked up whatever ailment that had me down last week.  Right now he doesn’t have a cough or fever; he just seems to be congested and can’t quite clear his throat.  This has caused him to gag; while awake when taking his bottle and even while he is sleeping.    We will definitely make sure Aiden’s lungs are checked during his appointment tomorrow.  Although you could visibly tell he was not feeling 100% when this started, today seemed to be much better and he was back to full smiles and happy as ever…this is quite promising!!





Aiden is officially seeing the occupational & physical therapist twice a week.  He does pretty good in both sessions, I would said OT all the way through because it seems to be more like playtime, but poor Debbie gets the pouty lips (I seriously have the BEST picture of this) and cries by the end of his PT session.   Not only are Aiden’s sessions great for development, but I am learning many techniques I can use at home to help him develop and get stronger.  Although he is quite strong in many areas, they will continue to work on building his core, bringing hands together and to his mouth.  When on his side, he has the most control and can do these things, but while on his back, finds it more difficult to achieve.




Although this was a BUSY week, it was also a very special one, as Aiden was able to celebrate two birthdays with the family (his big brother Ash and his Dad).  Having our family together to celebrate is priceless and such a blessing.

Going back to the quote, every day I wake up with a thankful spirit, thanking God for choosing us to be Aiden’s parents.   I believe there is purpose in all we’ve endured over the past (almost) year and a half.  Would I change anything…well, sort of if I could…..that’s just being honest.  However, I don’t regret it.  I don’t regret the challenges, I don’t regret the journey, I don’t regret our spiritual growth, I don’t even regret the moments of uncertainty and I don’t regret being able to now share our lives with such a wonderful miracle.  Aiden has brought so much to our lives and enriched us in ways I never thought possible, perhaps even more than I realize in this moment.  I do believe that we were blessed with Aiden for a reason and this fight was not meant to be defeated without purpose.  I am committed to the cause and I acknowledge that this fight is much greater than us.

Love & Blessings~

#AidenStrong #CDHawareness #CDHwarrior

To READ Aiden’s Story – Love, Hope and Faith for Aiden

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Just a few more pics from a productive week!




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