Words of Encouragement
Written Mar 16, 2012 4:38pm by Hillary SirmonThankfully, Benjamin is almost back to the previous vent settings from before the attempted extubation. He is doing well continuing to progress slightly every day moving a little more, staying awake more, and responding to oral stimulation. Yesterday, Benjamin was awake from 7 am until 3 pm when he finally fell asleep. 🙂
Wednesday, the doctors, KC, and I decided that we would go ahead with the tracheostomy for Benjamin. He is able to breath well on his own, but he just can’t manage his secretions. This will give us a way to suction him until he is strong enough to manage it himself.
Today, it was brought up that it would be a good idea to go ahead and place a feeding tube in Benjamin’s stomach to assist with feedings. I knew this would be a good idea before they even mentioned it, but it still stings a little to hear it. Benjamin will have surgery Monday morning.
A friend brought a book called “Waiting For Eli.” Those of you who know me well know that I am not a big fan of reading; however, I could not put this one down. It’s a story of a Dad’s spiritual journey after hearing that his unborn son had spina bifida. There was one paragraph that stood out to me more than any other…
“I realized that day how blessed we were to be given Eli. Whatever suffering we would endure would be of little consequence on this earth. God was challenging us to live more spiritual lives, to pray more earnestly, and to offer up our sufferings for others. Eli would become and always be my stairway to heaven.”
Benjamin has brought all of us closer to God and closer together. 🙂 We feel so blessed to have him.
Happy St. Patrick’s Day
Written Mar 17, 2012 10:33am by Hillary SirmonBenjamin has had a great two days. He had an ECHO yesterday that appeared to be NORMAL! It was the first time I had heard the word “normal” when referring to Benjamin. 🙂 His pulmonary hypertension has resolved and there are no signs of pericardial effusion. (Another miracle) This morning, the doctor increased Benjamin’s feeds again and we are moving closer to getting off of the IV fluids.
Benjamin was sporting his Irish kilt this morning in honor of St. Patrick’s Day. Benjamin is our little St. Patrick in the way that he has brought so many of us closer to God like St. Patrick did many years ago in Ireland.
Written Mar 19, 2012 2:03pm by Hillary SirmonBenjamin is out of surgery and is doing well. This was the first time I was able to see his adorable face without tubes and tape. The nurses think Benjamin looks like me, but KC thinks differently. 🙂 Thanks for all of your prayers.
Yesterday, Lennon and Isla were taken to the aquarium while KC and I were at the hospital. They stopped at the fountain in Canal Place to make a wish. Lennon knelt down, folded her hands, and said “Please keep Benjamin safe.” Kids understand much more than we think, and I know the girl’s can’t wait to get Benjamin home. Lennon and Isla will be Benjamin’s guardian angels on earth.
Written Mar 21, 2012 7:41am by Hillary SirmonBenjamin had a restful day yesterday. With the assistance of medication, they made sure that he remained asleep so he wouldn’t feel any pain from his surgeries. During the surgery, the doctors had to increase his rate on the vent (normal procedure), but yesterday afternoon they were able to start weaning the vent slightly. I feel like this is a good sign. Benjamin should be able to start eating through the tube in his stomach in the next few days, and the doctor will change out his trach tube for a new one next week. After the trach change, we should be able to hold Benjamin again. This week, we patiently await the return of more genetic tests and muscle biopsies. I have been surprisingly patient waiting on the return of the tests, since I have been focusing on Benjamin’s continued progress to take my mind off of the anticipation. At this time, we are working on weaning Benjamin off the vent, in hopes that we can leave the vent at the hospital. 🙂
First G-Tube Feeding
Written Mar 21, 2012 7:00pm by Hillary SirmonToday, Benjamin was able to “eat” for the first time using his g-tube. The nurse “fed” him at 12, and KC and I “fed” him at 6. So far, so good! Benjamin is doing well on the vent, and they were able to lower the settings twice today. He is resting comfortably and is needing less morphine to regulate his pain after surgery. One set of the genetic tests that were to return today have to be redrawn, but we should get some results from the muscle biopsies tomorrow.
This morning, the nurse was teaching us how to feed Benjamin through the g-tube. As she was talking, I found myself drifting off thinking, “How can I do this?” Well, I keep reminding myself that God does not give us more than we can handle, so “I can” and “I will.”
Those of you who know me well, know that I don’t usually ask for help. Well, things are a changin’! I truly appreciate everyone offering what they can, and I may be contacting you soon. 🙂 Those of you who offered thinking I would never take you up on it, don’t answer your phones. Ha ha! I just might call. 🙂 I have always heard that it takes a village to raise a child, but it wasn’t until now that I truly believed it.
The Initial Results Are In
Written Mar 23, 2012 9:06pm by Hillary SirmonThe past two days had been pretty uneventful. Benjamin continued to do well with lower settings on the vent and he tolerated all his feeds in increasing amounts and frequency. Today, he has been much more active, alert, and even showing more facial expressions.
Yesterday, Dr. Nayazov (geneticist) emailed me to let me know that he would have results today and would discuss them with us this afternoon. As we visited with Benjamin and his nurses, I became more and more anxious. KC and I both new that he must have results. Dr. Nayazov walked over with a handful of paperwork and asked us if we wanted to talk there or go somewhere else. (You have to know that cannot be a very good sign) Dr. Nayazov gave us the results of the initial biopsy and a diagnosis of myotubular myopathy. This is a disease of the muscle that causes weakness throughout. He discussed with us a few possible types and we will continue to test further to finalize the exact type of myotubular myopathy.
I am sure many will go and “google” myotubular myopathy, but I wouldn’t recommend it. No matter what the internet or books say, we will not live our lives fearing the worst. We will live day to day and enjoy every moment we have with Benjamin. Supposedly, only 60% of children live past one year of age and most of the ones that do live past one year are dependent on a vent. I believe that Benjamin could be in the small percentage with a longer life and fewer complications.
I once had a patient’s dad say, “Somebody has to be the most intelligent, highest functioning kid with down syndrome. Why can’t it be my son.” I keep running this through my head wanting to stay positive, though realistic. Why can’t Benjamin be the highest functioning kid with myotubular myopathy?
Though I thought I was somewhat prepared for this, you can’t ever be prepared to hear that your child has a disease that will take his life before yours. I know this will be something that I struggle with on a daily basis, but I will do everything I can to make everyday of Benjamin’s life better than the one before. I find peace in the thought that our life here on earth is so brief in comparison to our afterlife.
A Beautiful Sunday
Written Mar 25, 2012 10:57pm by Hillary SirmonBenjamin has had a great weekend. The doctors continue to increase Benjamin’s feeds and decrease the vent settings. Hopefully soon he will be off the IV fluids and they can remove his central line. Tomorrow, Benjamin will have his first trach change and we should be able to hold him again soon. He has been awake much more often and he is moving more everyday.
Benjamin’s continued progress has really made dealing with his recent diagnosis much easier. No matter what the diagnosis, he is Benjamin and I couldn’t imagine him any other way. KC and I are playing much more active rolls in Benjamin’s care in the NICU, and this should make our transition home much smoother. We are still not sure when we will be able to go home, but all of us look forward to the day.
Our Big Boy Bed
Written Mar 27, 2012 3:52pm by Hillary SirmonBenjamin had quite a day yesterday. He is breathing on his own with minimal support from the vent and they continue to lower the pressure support supplied by the vent. His doctor says that Benjamin is working really hard to go home without a vent. 🙂 (This brought a joyous tear to my eye.) He was completely taken off IV fluids and is solely on fortified breast milk fed through his g-tube. Benjamin’s trach was changed yesterday by the surgeon without difficulty, and KC was able to hold him between feedings. (I try to share this honor.) The physician was accompanied by students and residents, so as they walked away, I asked him if 4 residents would come by my house on Mondays for trach changes. No one made a comment. 🙂 Thinking about all the care he will need at home can get a little overwhelming.
Yesterday afternoon, we transferred Benjamin with all of his religious articles to a new bed…a crib. I have been telling KC for weeks, “You know you are doing well if you are in a crib,” and it was finally Benjamin’s turn. He looks so much healthier and bigger in his crib and now he is even starting to wear clothes.
One Less Line
Written Mar 28, 2012 8:53pm by Hillary SirmonBenjamin and I had a busy day. I am becoming much more independent with his care (I did not say fully comfortable), and the nurses are letting me play a more active roll. The doctor lowered the pressure on the vent once again and increased Benjamin’s feeds slightly. So far so good! The surgeon also stopped by and removed Benjamin’s central line. Now, Benjamin is only connected to the vent and a monitor. I am finally able to pick him up and sit down to rock him without any assistance. 🙂
Today, I read “Angel Unaware.” It’s a story written by Roy Roger’s wife in the voice of their daughter Robin. Robin passed away at the age of two, and the story is written as Robin talks to Jesus about her time on earth and about her earthly parents. The story frequently talks about how Robin was never in any distress on Earth because she was held in God’s hands. She knew the purpose of her short time on earth was to bring people closer to God and she felt blessed to have such a mission. Benjamin has already tightened my bond with God and the thought that He is standing with Benjamin puts my mind at peace.
The hospital staff is very supportive, but sometimes I feel like a few people treat me like I have already lost a son. With a little bit of frustration after an article was recommended concerning children dealing with the loss of a sibling, I looked at our nurse with a smile and said, “Benjamin may not grow to be an old man, but I think we are stuck with him for a while.” 🙂
As I am finally able to discuss Benjamin and his diagnosis with people, I tend to find that it is harder on the person I am talking to than on myself. I want everyone to know that though I have moments of sadness, I am overwhelmed with a feeling of joy that I am blessed with such wonderful and special son.
Trial 1: A Success!
Written Mar 29, 2012 4:14pm by Hillary SirmonThis morning in rounds, Benjamin’s doctor decided it was time to trial Benjamin off the vent. I was so anxious all morning, saying every prayer I could remember. Well my prayers were answered. Benjamin was taken off the vent today for an hour and was given oxygen only. He did so well, I think he surprised everyone a bit. They will continue to trial Benjamin off the vent, but they want to make sure he starts to gain more weight before they take him off completely.
I met with physicians, nurses, and the social worker today to discuss Benjamin’s status, his progress, and to start planning for an eventual discharge. It looks like we will be here for another month or two, and they will not let us go home until we are fully comfortable with all the equipment. I am very ready to have him home, but I was very relieved to know that they were going to give Benjamin every chance they can to wean him from the vent.
Way to go Benjamin!
Ready For His Close Up 🙂
Written Apr 2, 2012 9:32am by Hillary SirmonBenjamin had a great day yesterday. Benjamin, KC, and I were scheduled at 1:00 with a photographer in the NICU. A program called “Now I Lay Me Down To Sleep” connects a professional photographer with the more critical kiddos in the NICU offering a free photo session with the baby and family. (They assume that you aren’t going to drive straight to the photographer for baby photos upon discharge… Good assumption.) Initially, he took pics of Benjamin while on the vent, but with the help of the respiratory therapist, Benjmain was able to take many pictures without it. He tolerated a few minutes without the vent or oxygen pretty well. We should receive our CD of pics in 2 weeks.
They continue to work for an hour daily with Benjamin off of the vent. Like I mentioned earlier, Trial 1 went well. The next day, Trial 2 went even better. After Benjamin showed some signs of distress with the third trial, I was a little discouraged, bringing back some of those sad feelings I had in the beginning. Yesterday; however, Benjamin came rallying back and handled the hour so well. This can be such a roller coaster, but with the grace of God, his ups significantly out number his downs.
Two Hour Sprint
Written Apr 2, 2012 4:45pm by Hillary SirmonBenjamin passed his first TWO hour sprint off CPAP today with flying colors. Way to go Benjamin! I am one proud momma. 🙂
Moving Right Along
Written Apr 4, 2012 12:37am by Hillary SirmonBenjamin had another great day today. He continues to do well with brief periods off CPAP, and hopefully soon they will continue to challenge his endurance by increasing his time or frequency of trials.
After all his stretches today, I positioned his arms various ways to observe his active movements. For the first time, Benjamin actively extended his wrist past neutral, and he did this multiple times. (I was like a proud mom at a sporting event trying to film it.) I then supported him in a sitting position in front of his mobile. Because our eye movements are controlled by voluntary muscles, Benjamin has trouble looking around. Sitting in front of the mobile, I could notice his eyes trying to shift between objects in small amounts. He is also trying to turn his head to the left and right to look around.
Many of you may have heard about the recent image of Jesus’s face at the Ursuline Chapel in New Orleans. Since Benjamin’s birth, a close friend of ours and her daughter have lit candles for Benjamin at this same Chapel. Some may think it is coincidental, but I believe that it is a sign that Jesus is with our little angel and that He is hearing our prayers. I can see small improvements everyday, and the nurses and therapists are noticing these changes as well. I am watching miracles evolve daily through Benjamin. Keep up your prayers. They continue to MOVE him. 🙂
Written Apr 7, 2012 9:55pm by Hillary SirmonBenjamin continues his journey in a positive direction. He is “eating” well through the G-tube, and has finally started to gain a little weight. He is currently 6 pounds 11 ounces, and one of the larger babies in the NICU. At home we call him “Baby Ben,” but in the NICU, he is known as “Big Ben.” (Most of the babies are premies)
The two hour trials off CPAP (ventilator) remain at once a day, and Benjamin appears to work a little less each time. They are holding off on increasing his time off CPAP until he gains more weight, and looks a little more comfortable toward the end of the two hours. If I had to pick one main goal for discharge, it would be for Benjamin to be completely off the ventilator.
The greatest change has been in Benjamin’s movements. He is trying to kick his legs, turn his head, move his mouth and tongue, and even helps slightly with holding his head in supported sitting. Yesterday, when I sat him up, I rested the back of his head in my hand like I did each time before. This time; however, Benjamin was able to pull his head forward lifting it out of my hand. Luckily, my quick “mommy reflexes” caught his head before falling forward. 🙂 I was happily caught off guard.
This morning I stayed a few hours at the hospital before the family Easter gathering. Being away from Benjamin during the day is out of my routine, and I find myself feeling a little sad. Once I started getting into my routine of waking up, going to the hospital, spending the day, heading home at shift change, playing with the girls, and going to bed, it almost feels normal. (It is odd how visiting your baby in the hospital can feel normal) Days like today, when I am away from him, is when I realize that nothing about this is normal. In the hospital, Benjamin has trouble just like the rest of the kids next to him, but out of the hospital, it is a very unique situation. At this time, I am much more comfortable at the hospital with Benjamin and with the people who see this everyday (nurses, therapists, doctors). I am slowly getting better sharing my feelings about Benjamin, but I tend to avoid emotional situations. 🙂 Our friends and family have been so wonderful, I am sorry if I haven’t quite been able to show my appreciation. We thank you for everything you have done for us, and please continue your prayers for our “Baby Ben.”
Benjamin wishes everyone a Happy Easter.
Yipee For Three
Written Apr 9, 2012 7:19pm by Hillary SirmonEaster Sunday was a great day for our family. Isla screamed “Jesus” and clapped as we turned into church, Lennon mentioned she might need her swim suit in her backpack for the sprinkling of Holy Water, and Benjamin handled THREE hours off CPAP like a champ.
As Benjamin was closing in on his two hours off CPAP yesterday, his blood gas levels were close to perfect, so the doctor on call said to leave him on another hour. He tolerated it beautifully with no signs of distress. Today, Benjamin did it again, and tomorrow we are going for FOUR hours. Cross your fingers and say a prayer.
KC and I are gradually getting more comfortable with the care Benjamin needs. We are now able to feed, clean, and suction him, and today KC changed Benjamin’s trach without a problem. I am trying to have multiple family members prepared to care for Benjamin, because I know we will be fighting over him when he gets home. 🙂
7 pounds and 4 hours.
Written Apr 10, 2012 4:13pm by Hillary SirmonWhat started off as a rough day is turning around to be a great one.
This morning, I went to the Social Security Office to apply for Disability for Benjamin. I didn’t realize how anxious I was about having to do this until I completely forgot my home address when asked by a very busy woman who didn’t have time for pauses. Surely, that woman thought I was crazy. Things only got worse from there. As I sat down at the desk, the next woman asked the first and easiest question of the day, “Are you applying for disability for your child?” So many thoughts went through my head…I can’t believe I am here…How am I going to do this… And most profoundly, My child has a disability. I lost it, and cried. I was crying to a complete stranger, when most of my family hasn’t even seen me cry. It was the first time I had heard Benjamin and disability in the same sentence. To us, he is Benjamin. He doesn’t fit in a category, we have more special needs than he does, and I think I NEED him more than he NEEDS me. Benjamin has accomplished more with his ability than most people accomplish with theirs. 🙂
When I arrived at the hospital, Benjamin was starting his fourth hour off CPAP. He looked great and I was so happy to see him, forgetting all about my rough start to the day. Benjamin completed all four hours finishing up with good blood gas levels. If that wasn’t enough, Benjamin gained more weight last night and he is finally over 7 pounds. (7 pounds 3 ounces to be exact) He is on his way to being “Big Ben.”
Thanks for all your amazing prayers. Benjamin and God keep amazing me everyday.
A Small Step Back
Written Apr 12, 2012 9:59pm by Hillary SirmonAround 3 am last night, Benjamin started working harder to breath, becoming a little pale and sweaty. He continued this through the morning until around 11 am. His doctor ordered a chest X-ray and a tracheal aspirate to check for an infection. The chest X-ray looked fine, and we are waiting on the results of the aspirate. Benjamin’s secretions are getting thicker making suctioning more difficult, so we may be starting another treatment soon, but with caution because it can have some side-effects on his heart. They increased the pressure on the CPAP and are holding off on the trach collar trials until Benjamin looks better.
It was obvious he didn’t feel well today so he wasn’t overly active. It’s a lot of work just for him to breath, and it was even harder last night. This afternoon, he finally started to look a little better and more alert.
Though it is hard to watch Benjamin have any type of set-back, we are so lucky that this one is mild and has happened after so many good days. We are still feeling blessed. 🙂
A Manicure In His Bouncer
Written Apr 13, 2012 4:55pm by Hillary SirmonBenjamin’s nurse today had a fantastic idea. Since he receives treatments to his chest to loosen up secretions by either vibrations or cupping, she thought it would be perfect to put Benjamin in a bouncer that vibrates. Well, after 30 minutes, we had to suction him multiple times and now his breath sounds are great. Benjamin does look a little tired, but he sat up in the bouncer for almost 3 hours following 30 minutes of Occupational therapy. Way to go Benjamin!
While in his bouncer, I sat on the floor next to him. We visited, and I gave him a manicure. Usually it is very easy to cut Benjamin’s nails, but today, he was a little more squirmy….AMEN! I think we are getting back on track. 🙂