More of Week 1

An Eye Opening Experience

Written Feb 21, 2012 12:34pm by Hillary Sirmon

Benjamin had another good night and morning. The nurse overnight said Benjamin opened his eyes once for her, which is an improvement since he hadn’t opened his eyes since Friday. Everyone notices that he is moving a little more. In rounds this morning, it was decided to increase Benjamin’s feeds and decrease the nitrous associated with the vent.

Today was a big day for me as well. I was able to change his diaper, give him his milk through the feeding tube, and lift him up for the nurse to adjust his blanket. It’s the little things that continue to get us through the day.

On a positive note, KC and I have been able to spend alot of quality time together. We’ve decided we still like each other :), even bringing us closer together. Benjamin has already brought this family closer together and even closer to God. He is our little miracle.

 

My Handsome Little Buddy and His Double Chin 🙂

Written Feb 22, 2012 11:40am by Hillary Sirmon

Yesterday afternoon, Benjamin had a little trouble adjusting to the new nitrous and vent settings. Overnight, he did well showing good oxygenation of his blood so the doctors lowered the nitrous a little more. They decided to increase his feeds and he continues to have a good amount of dirty diapers. His lungs appear a little clearer except in one area and they are treating that by chest vibration therapy.

Today, I was able to feed Benjamin through the tube, helped the nurse position him, do some exercises to his hands and feet, and changed another dirty diaper. Helping anyway I can makes me feel so much better.

The nurse overnight said Benjamin opened his eyes, and all agree he is responding more to touch. He is still very swollen sporting a very handsome double chin, but hopefully when he is taken off some of the meds tomorrow, we will see that improve. Though this is an extremely slow process, we do continue to see progress. Please keep him in your prayers.

And Happy Birthday to Ben’s big sis Isla!

 

The Therapy Begins

Written Feb 22, 2012 3:34pm by Hillary Sirmon

Benjamin started Occupational therapy today. She worked with his arms and legs, as well as, facilitating a sucking response with the pacifier. He tolerated handling very well raising his sats to 98-100. Benjamin even opened his eyes slightly, which makes it the first time i have seen his eyes in 4 days. Though it is much improved, he continues to be tight in his ankles, wrists, and hips. Tomorrow, she will make Benjamin resting ankle and wrist splints.

Even though progress is slow and we have occasional setbacks, I feel better each day with how Benjamin is doing. I want to thank everyone for their prayers, messages, and calls. I am sorry I have not replied to everyone, but I still find talking about everything that has happened very difficult. For anyone who knows me, being alone and not talking is not like me, but it is how I am coping at this time. I am sure it will not last long. 🙂

 

So Hard to Say Goodnight

Written Feb 22, 2012 9:36pm by Hillary Sirmon

KC and I went for just a little while after changeover today, since we had to leave the unit for a few hours while they admitted more babies.  I am really glad we did.  While we talked to Benjamin, he started to open his eyes a little and it appeared that he was trying to look around a bit.  His eyes are still very swollen making it difficult to open them, but it was by far the most activity we had seen with his eyes.  I am a little fearful of our future sleeping schedule since Benjamin seems to be a little more active at night.  🙂

 
KC and I continuously speculate on what we think could have caused all of this.  I am not sure why we think we can figure it out, since all the doctors seem to be scratching their heads on this one.  I keep having visions of all of us on “Mystery Diagnosis” one day.  🙂  Some moments we feel very positive about what is going on, and then we have those moments where we feel a little more negative.  I tend to have my negative feelings when I am away from Benjamin.  Being with him only makes me happier.  No matter what our future holds, we feel blessed to be Benjamin’s parents.  He continues to bring us all closer together and teaches us to take one moment at a time. 
 

Written Feb 23, 2012 1:45pm by Hillary Sirmon

Dr. Niyazov (geneticist) came by to see Benjamin today. After his initial assessment, he is recommending additional genetic tests. Though this is something I expected, it is still very hard to hear. Hopefully we will be getting back the test that was sent off on Monday soon.

Benjamin had a little trouble on the vent last night having to raise some of the settings, but this morning they lowered the amount of nitrous again and his blood gas labs are looking better. Benjamin will be able to get more milk at all of his feeds today and is tolerating his range of motion exercises beautifully. He is moving his arms and legs a tiny bit more and trying to open his eyes briefly.

All we can do now is pray that Benjamin continues to work toward independent breathing while we wait for some type of reason all of this has happened. This has truly been the longest week of my entire life.

 

One Week Old

Written Feb 23, 2012 7:26pm by Hillary Sirmon

Occupational therapy made Benjamin’s splints today for his hands and his feet.  Just after the first three hours of wearing the splints on his feet, they were already looser.  Benjamin did have a little bit of a rough afternoon.  Between the blood draws, changing the holder for the tube of the vent, chest therapy, and position changes, it took him a little longer than usual to get back to a semi-comfortable state.  

 
Dr. Nayazov (geneticist) called me this afternoon stating that the original genetic test sent (Oligoarray) came back negative.  Although this is good news, it only looks at a small amount of genetic possibilities.  Our next test results should be back in one to two weeks. 
 
Today seems to be our toughest day yet.  With all of the genetic discussions and no progress with the vent, KC and I are both a little sad, angry, and frustrated just to name a few.  I have always believed that God never gives us more than we can handle.  Well, all I can say is that I am very flattered to think that God considers us strong enough to handle all of this.  Day by day, hour by hour, moment by moment. 
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