Week 3

  • And We Are Back To Two 🙂

    Written Mar 1, 2012 10:17am by Hillary Sirmon

    Thanks to everyone’s prayers, Benjamin is now working with 2 lungs again. I stood by as the residents stared at Benjamin’s X-ray in disbelief. One asked how that happened, and all I could say was “prayer” with a huge smile and a tear in my eye.

    Today, they are increasing his feeds and they lowered the settings of the vent slightly. His heart ultrasound shows improvement and his pericardial effusion (fluid around the heart) has resolved. This is such a roller coaster of emotions, knowing each day holds something different. The bad days make you really appreciate the good ones. So far, this has been a great morning, he has opened his eyes a few times, we have read through a few chapters of “The Legendary Adventures of the Flying Mingling Brothers,” and we are about to start our daily prayer regimen. Keep Praying! 🙂


  • The Geneticist

    Written Mar 1, 2012 10:00pm by Hillary Sirmon

    Benjamin had an awesome day.  The doctors continued to wean down the settings on the vent and Benjamin was able to decrease his oxygen need to “room air” multiple times during the day.  He is responding more to oral stimulation, and is showing an increased frequency of blinking, attempts at coughing, and even yawning.  The yawning is so cute.  🙂

    The geneticist stopped by this afternoon with a bit of good news.  So far all the genetic tests have been negative, avoiding many of the more severe and progressive diagnoses.  He continues to believe that there is definitely a genetic component to all of this, but in his opinion, he thinks Benjamin has a genetic diagnosis that will not affect his mind, but mainly show with muscle weakness.  When we asked about the progression, he stated he believes it is something that could slowly and gradually improve, but not to the level of his peers.  All of this is only his professional opinion at this point, and we do not have a definite answer.  We have a few more DNA tests out and if they also return negative, then Benjamin will have a muscle biopsy.  
    To some, this news may sound sad and depressing; however, considering that we have had to prepare ourselves for the possibility that Benjamin may not have a long life, this news is very uplifting.  I don’t need Benjamin to be stronger or faster physically than the other kids his age, I just want him to have the chance to live, love, and be happy in whatever capacity God has chosen. 
    • Two Great Days

      Written Mar 3, 2012 9:03am by Hillary Sirmon

      Benjamin had another great day yesterday…Two days in a row!  Overnight, they were able to lower the settings on the vent and then yesterday morning, they were able to lower it once again with the rate and pressure.  He did very well only needing to go up in oxygen slightly.  He is having some problems with tolerating his feeds, but I expected this due to his low muscle tone.  

      I was able to hold Benjamin for about two hours yesterday afternoon while he rested so peacefully.  Upon transferring him back to his bed, Benjamin finally decided to wake up, opening his eyes, and looking around slightly.  Because of shift change, we had to leave at that point.  It is already so hard to leave him, much less when he is awake. We pray for another good day today.  


    • Lennon Visits Her Baby Brother

      Written Mar 3, 2012 7:03pm by Hillary Sirmon

      Benjamin had a pretty good day today. They lowered his rate on the vent this morning and he appeared to tolerate it well. His blood gases weren’t as great as we would have liked, but we are hoping the next one will be better showing he just needed a little time to adjust to the lower rate. Benjamin continues to have difficulty with his feeds, probably because of the low muscle tone and because he is not actively moving around. I know I wouldn’t like eating laying down.

      When KC and I left the house this morning, Lennon cried to go see Benjamin. Honey (KC’s mom) picked her up today and brought her by the hospital to see Benjamin. She brought him an adorable pair of socks and a less than spotless stuffed elephant from our house. I am going to sneak it back into the house and give it a good scrubbing tonight. When I asked her what Benjamin told her she replied, “I Love You.” It is so great how Lennon is not scared or sad when she sees Benjamin. She only sees “her little penguin.” …only if we were all more childlike. 🙂


    • Kangaroo Time

      Written Mar 4, 2012 7:13pm by Hillary Sirmon

      Kangaroo Time. Benjamin had a pretty good day today keeping the settings on the vent the same as yesterday.  You can see him trying to take more breaths over the vent, and he no longer drops his O2 sats when they briefly take him off the vent for suctioning or transfers.  He continues to have difficulty digesting milk, having some residual in his stomach during the day.  Another x-ray will be taken tomorrow to assess for any changes.  

      I was able to “Kangaroo” Benjamin today for the first time.  Kangaroo is where you are able to hold the baby skin to skin.  A mother’s body is able to assist with temperature regulation of the newborn.  It was my first feeling of normalcy.  With my eyes closed, I was able to hold Benjamin and feel like everything in the world was as it should be.  It was a feeling like I was actually able to do something for Benjamin. (Other than constantly sitting and pumping milk)  This was the first time I felt as though I was able to comfort him.  
      Tomorrow, the geneticist, the neonatologist, the neurologist, and surgeon will discuss a muscle biopsy for Benjamin.  This test may finally get us some answers, but the tests can take up to two months.  I hate thinking about them having to take a piece of Benjamin’s muscle, but I know we need to know what is causing all of his weakness. Please continue with your prayers.  I do not think Benjamin would be improving as much as he has without them. 
      • Written Mar 6, 2012 11:11am by Hillary Sirmon

        Benjamin continues to slowly improve with breathing, weaning the vent daily. Though it is a painfully slow process, atleast we are moving in the right direction. He continues to struggle some with his feeds, but they changed from continuous to bolus feeds, and he is tolerating them a little better.

        At this moment, I am finally starting to see a little attitude in Benjamin. 🙂 He is a little angry right now with the tubes and hand splints, showing us an angry face, increased heart rate, and starting to move his arms. I LOVE IT!

        We are waiting to be notified when the biopsy will be scheduled this week. I am not nearly as anxious as I thought I would be to find a diagnosis. I think God has truly given me a sense of peace with this, teaching me to look at a one moment at a time. Whatever it is will not change how much I love Benjamin, or how much I love spending time with him.


      • Written Mar 6, 2012 10:52pm by Hillary Sirmon

        Benjamin is scheduled for his muscle biopsy at 8 am in the morning. Please say an extra prayer for him.


      • Written Mar 7, 2012 2:01pm by Hillary Sirmon

        Benjamin’s biopsy went well. He is resting peacefully. They did have to go up on the vent rate, but hopefully he can recover quickly.

        Written Mar 8, 2012 1:01pm by Hillary Sirmon

        Benjamin has not only returned to his previous vent settings, but is actually breathing enough to have them lowered even more. His chest x-ray this morning was clear, and if he continues at this pace, he may be extubated on Friday or Monday. Pray that all goes well.

        Benjamin is also moving more. Yesterday, I was needed to hold his hands still so the nurse could change a very dirty diaper. He is becoming more aware of things going on, starting to pull away from heel sticks, squirming out of his hand splints, and trying to move his breathing tube with his mouth. Benjamin is showing more facial grimacing when he is upset, and I can now calm him with a pacifier. 🙂

        We have had so many good days in a row, I am trying to prepare myself for any steps back. I continue to pray that Benjamin will be healed, but I know that we have already seen so many miracles. He is such a little fighter.


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