Two Months Old
Written Apr 16, 2012 11:39pm by Hillary SirmonBenjamin celebrated his two month old birthday today. We really celebrate every little accomplishment now, not just for Benjamin, but for all of us… Isla has officially learned to jump this week, and Lennon is identifying and writing so many letters. Big things are happening in the Sirmon household. 🙂
Benjamin continues with his four hour trials, and stretched it out to five hours yesterday. Today, his blood gas levels weren’t as great, but it may have been because I changed his trach towards the end of his trial. Yes, I repeat, I changed his trach! I had such anxiety about it over the weekend, and I was shaking this morning. It went so quickly that I barely remember the details, but Benjamin and I survived. 🙂
His weight is gradually increasing, but at too slow of a pace so his feeds were increased again today. His cheeks are really filling out and he has cute little dimples on his knuckles.
I worked on tracking toys with Benjamin today, and he really seems to be improving. He followed the toy to his left with his eyes and head slightly, but had more trouble to the right. When I started to move the toy over his head, you could see him trying to lift the lids of his eyes more to follow the toy. He just gets cuter everyday.
I pray that tomorrow continues to bring new and exciting accomplishments.
Written Apr 18, 2012 7:38pm by Hillary SirmonYesterday, Benjamin’s 4 hour sprint off CPAP was changed to 2 three hour sprints. So far, Benjamin has done really well. If at any point he looks distressed, we suction him and all is ok. His feeds were increased and he continues to gain weight slowly. He is finally starting to get full cheeks and thighs.
Everyone continues to make comments on how Benjamin continues to look a little better everyday. We all think he is trying to smile. His top lip doesn’t pull up completely, but flattens out instead. I definitely think it’s a smile. 🙂
Written Apr 21, 2012 10:37pm by Hillary SirmonBenjamin continues with his two 3 hour trials every day. Yesterday morning, he showed a little distress towards to end of the trial with poor blood gas levels. We are not sure why he had such a difficult time, but he did have OT during the trial which may have worn him out a bit, and his secretions were pretty thick. Today was a much better day, but he still looks a little tired. KC and I both agree that Benjamin seems to be managing his secretions much better showing signs of a weak cough and swallowing. There is much less to suction in his trach and he rarely needs suctioning in his mouth.
Benjamin’s movements get a tiny bit bigger each day, especially in his face and mouth. He can frequently close his mouth and his blinking is getting stronger. He is much more animated especially when he is mad. (just like his sisters)
This past week, I have been in contact with families with boys with Myotubular Myopathy. These moms have really reached out to us offering any help and advise they can give. This is a new, fantastic, knowledgable, and much needed support system. I have enjoyed seeing pictures of their special and amazing kiddos. They all appear to lead happy and busy lives. 🙂 All I want for Benjamin is happiness. Isn’t that what we all want, a basic but important need. I know that is what Benjamin brings me, happiness. I’m only sad when I am without him, and hopefully that will only be a little bit longer.
Written Apr 23, 2012 9:47pm by Hillary SirmonBenjamin and I had a great day today. I am not sure if Benjamin did that much better today, or if I am doing a better job understanding him. 🙂 I think we are really starting to work together well.When I arrived at the hospital, Benjamin had been on the trach collar (oxygen trial) for about 30 minutes. I suctioned him a few times (relying completely on his cues), and he finished like a champ. After resting an hour, I sat him up in his bed to work on his head control. With his head slightly extended back, Benjamin was able to hold his head upright about fifteen seconds multiple times. He was even trying to turn his head slightly to watch his mobile. If his head moved too far out of midline, he was not able to “catch” it, but I think this is a good start.After resting a little more, we moved Benjamin to his bouncer where he stayed for about 1 1/2 hours. We call him the NICU Supervisor when he is in his bouncer. We are in the corner, so we face him towards the middle so he can watch everyone work, while working on his visual tracking. (Always incorporating therapy) While in his bouncer, one of the Nurse Practitioners walked up to Benjamin and started to talk to him. He quickly flirted back with the most adorable half smile. He is melting hearts already.The nurse and I moved him back to the bed so I could feed him. During his feeding, I placed Benjamin’s hand on his stomach to rest. Benjamin, however, had other plans, and kept moving his arm to the side. He was able to bend his elbow holding his hand in the air, and even tried to move his hand to his mouth. I think he could get his hand to his mouth if it wasn’t for the vent tubing in the way.The physician today put a consult in to the physician over the ventilator program. We know Benjamin will need the vent some if not all of the day, so we are getting prepared. This means that there is an end in sight to his NICU stay, and moving home may finally be closing in. The discharge process is a lengthy process that involves weeks of training, but at least we are starting to get prepared. Previously, talks of discharge only gave me anxiety and feelings that I was not capable of taking care of Benjamin without the support of the NICU. Today, when discharged was mentioned, I was excited and confident… and a little nervous. 🙂Tomorrow, mom (Nana) starts her training. I want as many people as possible to be comfortable around Benjamin. I don’t want our family to be nervous or fearful to care for him. Yes, it is different from the way Lennon and Isla were cared for, but after the last two hours with Lennon and Isla, I think Benjamin will still be easier to care for. 🙂
8 pounds 5 ounces
Written Apr 26, 2012 7:43pm by Hillary SirmonTuesday, Nana (my mom) began her training to help me care for Benjamin. She did pretty well learning how to suction, clean, and feed Benjamin. At times, she looked a little nervous, but she did a great job. Who wouldn’t be a little nervous? This is all so new to us.
Wednesday morning, we arrived early. After being there 10 minutes, we met Dr. Urrego who will assist us in managing Benjamin’s home ventilator. Since we were all there, we met in a conference room to discuss the plan for Benjamin’s discharge. Even though we have been there 10 weeks, it all seemed to be happening so fast. On May 7th, mom and I will stay a few days to a week in the hotel next to the hospital to start learning the home equipment. After we are comfortable and Benjamin looks good with the new vent, we will then move to a room on the NICU floor with Benjamin to continue our “baby boot camp.” This process should take a few weeks. After May 7th, the next time I will be home will be with Benjamin. Such a great feeling.
Benjamin has done pretty well the past few days. He continues to show us new movements and facial expressions. I actually had to move his right hand out of the way Wednesday to suction him. I was very excited.
Unfortunately, Benjamin hasn’t done as well on his trials off the vent as he did previously. A few days ago, the physician lowered his trials to 2 hours 3 times a day, and today they lowered them again to two hours once a day. Apparently, last night Benjamin struggled a little bit after an hour off the vent and a tear rolled down his right side. That does it for me. Another mom I have been writing to made a good comment. She said, “At some point you have to decide if you want Benjamin to use all his energy to breathe, or do you help him breath so he can use his energy for kid stuff.” This was something I had previously thought about, but her telling me this kind of made it ok for me. As a therapist who has watched kids struggle on a daily basis, I always swore that if I had a child with special needs, I would pay attention to his or her cues. (not their words because sometimes they will say anything to get out of work 🙂 ) Benjamin, without words, has told us that this is just too much right now, so we will listen and approach it differently. We are not giving up on Benjamin being weaned off the vent, but we have to do this on his time, not ours.
Written Apr 29, 2012 12:45pm by Hillary SirmonWe have all started preparing for Benjamin’s long awaited arrival home. We spent all day Saturday rearranging and cleaning making more room for Benjamin and all his attachments. 🙂
At the hospital, the NICU staff is working on a schedule for Benjamin that will allow us to sleep some at night, as well as, making adjustments to his feeds and treatments. The doctors have stopped Benjamin’s sprints off CPAP since it was obvious he was having to work way too hard and we completely agreed. Benjamin is not worried at all. He is currently relaxing in his bouncer watching his first movie, Finding Nemo.
I am filled with so many feelings. Leading off is excitement and anxiety. We know this is going to be a challenge, but Benjamin makes it all worth it. Hopefully, Benjamin will be arriving in Luling in about 3 weeks. 🙂 I am so ready to have him home.
Written May 10, 2012 8:56pm by Hillary SirmonAfter a few days of delays, we officially started training today to learn all about the equipment Benjamin will have at home. Luckily, I am not doing this alone, (KC is out of town for residency) but with my wonderful and selfless mother. She has no medical background, but she is a pretty smart lady so she should pick it up quickly. 🙂
We arrived at the hospital at 7:30 am to spend some time with Benjamin before the intense training with the ventilator. The very patient respiratory therapists made sure everything was easy to understand while allowing mom to make notes in her notebook. For once, I was actually able to teach mom some things after thirty years of being the student.
Learning how to use the equipment wasn’t difficult. The stressful part was watching them pull more and more and more equipment into the room. The “portable” items are a joke, and the vent is almost 20 pounds making traveling a tad bit difficult. I am determined though for Benjamin to be able to enjoy life with various experiences outside of our home and his room. (even though his room is adorable if I may say so myself) It may be interesting and require an army, but we will pack it all up and go. 🙂
The first few days, Benjamin will stay in the NICU while we stay in a hotel connected with the hospital. Hopefully, by Monday, we will transition into a room on the NICU floor with Benjamin. Maybe we will be home sooner than we think. 🙂
Training Day 2
Written May 11, 2012 9:59pm by Hillary SirmonAfter an early turn in last night, (physically and emotionally exhausted) we were up bright and early this morning ready to see Benjamin. Unfortunately for his nurse last night, Benjamin’s apnea alarm on his new vent went off pretty often keeping her on her toes and keeping Benjamin from a deep sleep. This is a good example of why he is kept in the NICU for a few days while transitioning to the new vent.
Poor little Benjamin did not look well rested this morning with some swelling in his face and a little pale in color (like the morning after a crawfish boil. :)). The settings on the home vent were adjusted, and Benjamin slept most of the day. He even took a little nap on his belly (makes this PT happy) for first time since his tracheostomy. Apparently, there is an adjustment period transitioning between vents so hopefully Benjamin will start perking up tomorrow.
I think Mom and I have done pretty well. We did have a moment of craziness when Benjamin needed to be suctioned while in the bouncer. While I suctioned, Mom moved between machines silencing them while holding a suction machine so the tube would reach to the bouncer on the floor. Benjamin looked just fine afterwards, but mom and I just sat and stared at him in silence. He definitely handles it better than we do. 🙂
The plan is for us to move into a room with Benjamin on Monday. We will stay in the room for a week hopefully going home the following Monday. We definitely won’t be going home until we are comfortable with Benjamin and all of his “accessories.”
Happy Mother’s Day
Written May 13, 2012 10:18pm by Hillary SirmonThis is Benjamin’s fourth day on the home equipment, and we all seem to be adjusting nicely. Benjamin continues to sleep most of the day, but his coloring is much improved. He is beginning to become a little more active even swatting slightly at a suspended bumble bee I placed over his bed. I think his nurse was just as excited.
My family came to visit today bringing Lennon and Isla with them. It was so great to be with the both of them, even though they ate most of the goodies they brought me for Mother’s Day. I know they don’t quite understand why I must be away, so I keep reminding them that when I come home, Benjamin will be coming home too. I can’t wait to have my little family together under one roof.
Throughout his bath tonight, Benjamin showed his sweet little grin as if to say “thanks mom, your the best.” It’s amazing how moments without words can have so much meaning. Through my years of working with kids who are unable to verbally communicate, I always thought of a smile as the most important method of communication. Tonight, Benjamin’s smile confirmed my previous feelings. I know there is a chance that Benjamin will be unable to talk, but knowing that he can smile at me makes it all ok. He melts my heart in silence.