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May 24, 2021
May 22, 2021
On May 17th, Maggie and I began to have the conversations that we never imagined necessary to have. Charlee's lungs were infected and they were not improving with the antibiotics she was on. With the help of one of the many amazing doctors who looked over our sweetheart, we began trying to answer questions as to how we would like the doctors to respond if this or that situation occurred. The night of the 17th was not unlike the previous couple where Charlee was having a difficult time staying comfortable without additional sedation. The following morning on May 18th, we met with another doctor/guardian angel of Charlee's. After being filled in on the previous night's events, Charlee was unable to retain oxygen at appropriate % levels. Her goal was between 75-85% but during these "episodes", she was dropping down as low as 20-30%. During our convo with the doctor, we officially listed Charlee as DNR if she were to go into cardiac arrest due to the sudden drops in oxygen she was showing. The same day, Maggie and I paid our respects to our daughter from another mother, Sterling. On the drive there, we agreed we would sleep in the hospital room that night.
Starting around midnight and into the morning of May 19th, Charlee continued to have these "episodes" where she would drop her oxygen levels to critically low levels and need immense support getting stabilized. Maggie and I stared in numbness as we watched multiple times throughout the night while doctors, nurses, and respiratory therapists did whatever they could to help Charlee find comfort. "Charlee in charge" has been something we've been saying since November 30th, 2020, the day Charlee came into our lives. This was her last ask to us. She fought the good fight. She overcame so so much. She was simply unable to fight off this infection. Charlee was ready to go. Around 6am after the team had stabilized Charlee one last time, we asked the team of doctors to ensure Charlee has no more episodes to endure. Charlee was placed on a higher sedation as well as a paralytic medicine. We began to tell family.
May 19th ended up being one of the toughest days of our lives. However, there was a silver lining. Aunts, uncles and grandparents all got to hold and talk with our baby girl. Most aunts, uncles and grandparents don't have to wait 6 months and the time is obviously much more than the few hours Charlee's had, I do know that those moments will never be forgotten by them. As our family was enjoying their time with Charlee on May 19th and May 20th, they realized Charlee had an extended family. Multiple nurses, doctors and therapists stopped by, shared hugs and tears while reminiscing on the moments they had with Charlee. We will be forever grateful for the love and compassion the team of nurses, doctors, therapists and many more gave to Charlee while caring for her. It was never easy to leave her room for the night, but knowing the caliber of help she had in her corner alleviated our anxiousness.
In her final moments, Charlee girl was surrounded by love. She was comfortable. She was in her parents arms. She passed in peace. Charlee had many "Charlee's Angels" looking after her on earth and now it's her turn to watch over us and to be our angel...Charlee.
May 14, 2021
Daddy's turn to share....I'll start with a fun fact. My wife is not a fan of me referring to myself as "daddy".
This is Charlotte's journal and in it contains her journey. So many things have changed in her 5.5 months here with us. One thing has remained constant though....Mommy by her side. I intended to write a nice Mother's Day post highlighting what my wife has exemplified since Charlotte has come into our lives. One thing led to another and I am now getting to it. I find it more fitting, however, to highlight her impact with Charlotte's journey on a normal Saturday. This woman deserves recognition every day. I want to highlight some moments over the past few months that make me so proud to call Maggie the mother of my child.
- Maggie refused an epidural during labor. I WANTED AN EPIDURAL DURING LABOR! Maggie wouldn't consider it though as she did not want to introduce anything more into Charlotte's complex situation.
- For the past ~160 days, Maggie has woken up, gotten ready and spent the next 10-12 hours by Charlotte's side. 160 days x 11 hours on avg = 1,760 hours in PCICU Rooms #4,8,3,6,2,1.
- Maggie has been engaged since day 1, understanding all the medications, the treatments, what each is intended to help, what side effects they have, etc. I have lost track on how many times nurses and doctors have said she should just go ahead and become a nurse. Today, with doctors, nurses and a respiratory therapist talking bedside with me standing in and Maggie resting in the corner chair, one doctor asked the other what bacteria infection has she been dealing with in the past. The responding doctor pulled out his phone, searching his notes for the name. I turned to Maggie and asked her the same question and without hesitation, the doctors were given the answer to their question.
- Every story is different in this unit and every mother handles their journey differently. Maggie has been able to connect with other moms and provide some level of support to them as they power through their own worries. They in turn have reciprocated the effort.
The above is a short excerpt from a long list of moments or collection of moments where my wife has left me awestruck in her strength and attitude. I see every day that the apple hasn't fallen far from the tree as Charlotte shows the same determination and grit to continue to move forward, no matter how small that step may be. In our moments of despair, we continue to remind each other to look at the whole picture, how far Charlee has come in such a short amount of time here with us. For 165 days our pride and joy has inspired us to keep going no matter how tough times may get. And there is no doubt in my mind.....she gets it from her momma.
May 12, 2021
It's been almost two weeks since our last update. The days are busy with Charlee. Some days a good busy. Days full of PT, sleeping in our arms, sitting in her chair, tummy time, sitting in her boppy. And some days have been a not so good busy. Charlee spikes a fever, her sats are dropping, her heart rate is way too high, her belly is so distended she can't breathe, she is agitated because she's withdrawing. Those days are hard. But the good days outweigh the bad days. Since getting her trach Charlee's demeanor has completely changed. She is much more comfortable. And most importantly she is smiling.
I had originally started writing this post to update you all on Monday morning. I took a break as Charlotte's nurse came in. In those few moments I took that break, the unit completely changed. The code alarm went off sending everyone rushing. I always immediately begin to pray when the code alarm goes off in the unit. As I prayed and walked to the door of Charlotte's room, I noticed where the alarm was coming from. Sterling's room. Hours later I went for a walk to RMH with Maddie. I will not get into details because it is not our story to tell. What I will share is this. Yesterday, heaven gained the most beautiful heart warrior angel. Sterling Nova Raspe passed away peacefully in her parents arms. Surrounded by so much love. Sterling changed the world. She impacted the lives of so many people surrounding her. She brought Maddie and Kingsley into our lives. Friends we know we will have for life. We are a part of each other's stories and always will be. Tonight and for as many nights as you may like. I ask for you to pray, toast, light a candle and honor Sterling. For the 8 months she was here, she conquered more than many people could ever imagine. Cheers to you Sterling, now and forever.
April 29, 2021
Today was Charlotte's first trach change and it was a success!!! This means she is ready to get moving, exercising, and in our arms as much as possible! She did her first PT session today since her surgery. Slow and steady is what is best for Charlotte as we work on getting her stronger. My sister put it perfectly when she texted me this morning. "Tell Charlotte today is St. Catherine's feast day! She moved mountains just like our girl!" We put a lot of thought into picking out Charlotte's name, before we even knew the impact she would have on this world. She sure has moved mountains, changed our lives, and is our little warrior.
Today was also a day I looked forward to because I knew I would get to see our good friends Maddie, Kingsley and Sterling. As I walked downstairs to meet Tim for lunch, I took a peek into the outpatient center and saw them standing in the waiting room. I walked in to give them hugs and say hi. In that moment they were finding out they were to be readmitted to the PCICU. I hugged Maddie, held back my tears and said a prayer. So today we ask for prayers for our good friends and their sweet little girl, Sterling.
“Nothing great is ever achieved without much enduring.” - St. Catherine of Siena
April 28, 2021
If you remember in early March, Charlee had her cath procedure. Her pulmonary pressures were good, but a little bit high to be sure the Glenn would be successful. After the cath, the doctors decided to place the PA Band. The goal of the band surgery was to lower her pulmonary pressures and decrease the over circulation of blood she was getting to her lungs. After her PA Band, the doctors were happy with how things were looking. But then, Charlee got a clot. Or in medical terms, a pulmonary embolism. A pulmonary embolism blocks blood flow into the lungs and also increases blood pressure in the lungs. Charlee got a clot in her pulmonary artery, throwing her pulmonary pressures completely out of whack. Which at this time makes her a bad candidate to receive the Glenn. Charlee's clot stopped in her pulmonary artery because she had a PA band. Charlee's PA band saved her life. So for now, the answer is, we do not know when the Glenn will be happening. As always, Charlee will let us know.
P.S. There is a respiratory therapist named Glenn who is awesome. No relation though to the surgery. :)
April 27, 2021
Par for the course with Charlotte. After any surgical procedure or stressful event, her body has an inflammatory response. Her recovery from her surgery had its ups and downs over the weekend. The key was making sure she was comfortable pain-wise. Although she has plenty of sedation, Charlotte has always hated being paralyzed. With all her little strength she fights it, which makes keeping her comfortable a little more difficult than normal. On Sunday morning, the team decided it was best to lift her paralytic but they needed to make sure she stayed sedated enough for minimal movement. We found the sweet spot for her comfort Sunday afternoon. Most importantly, she was able to use her paci again...and we all know that is her biggest form of comfort! Charlotte will remain sedated and comfortable for optimal recovery before her first trach change on Thursday. Charlotte getting her trach puts us one step closer to home and we cannot wait to bring our little girl home. But for some reason yesterday, the thought of going home really started to overwhelm me. There is a sense of home and comfort with being in the PCICU. It is also a bubble, a bubble of people who understand what you are going through. Nurses and doctors who have become friends, who you can have conversations with, cry with, and feel at home with. I know we need to take things one day at a time. We have new goals and milestones Charlotte needs to hit. There are things we need to learn before home is even a conversation. But yesterday, was just a day. A day where things got overwhelming.
Today was a good day. Charlotte has been comfortable and resting. The ENT team stopped by to check in on her progress. Her trach is healing nicely and she is recovering well. I also got to spend some time outside today catching up with my friend Kathleen, Becky's mom. For those of you who don't remember we met in January when Becky was in the PCICU. Kathleen has been a constant in my life since we met. Checking in with each other, checking in on our girls and asking for prayers, especially when we need them most. Our situations may be very different, but like I said before, the sense of comfort with people who understand what you are going through. I needed that conversation. I needed her hug when I saw her. I needed to hold Becky. I needed today, more than she may have known in that moment. Today, it was a good day.