Dear Annie,
As I haven't written to you for a couple of weeks now, I have been trying to figure out what to say...
When I was a little girl, I remember my mom always feeding me with plastic plates and cups. For if she let me use glass, I may have shattered it. Glass is so fragile, and if dropped, can be shattered into a thousand little pieces. Me, thinking that glass was the most fragile and precious thing in the world, was foolish of me to think. Because I now know that what the most fragile and precious thing actually is. And that is, "time". Time is the most precious of everything. We never know how much time we will have to spend with someone. Life is a guessing game, a rollercoaster, and we never reflect on the time we spend with someone until they are gone. Writing this letter to you is killing me inside. I sit here and stare at the computer screen not wanting to write this, I feel like I can't write it. So in fact, I am going to let your daddy write...
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We wanted to start this blog post by expressing our how eternally grateful we are for the love, support, and prayers that have been sent our way. We have truly felt inspired and uplifted by each of you. Thank you oh so much!
We would like each of you to know that although Annie has now received her wings, we plan on writing to our sweet girl until the day we are reunited. Writing to Annie has strengthened Jess and me, strengthened family and friends, and many more. It is our hope and prayer that we can all find something from Annie's story that entices us to want to be better people.
Given the recent circumstances Jessica nor I had a single minute to write a post. The next three posts will be written to Annie about the remaining week of her life on this earth.
Dear Annie,
On the Fourth of July your mom and I drove up in the morning to come visit you. A minute hadn't passed before she had you covered in Red, White, and Blue shirt, tights, bib, and of course the bows. I will admit you looked like the cutest little Fourth of July baby that hospital had ever seen.
As your mom was getting you all together I was speaking with one of the head nurses about conversation I had a couple days with one of the Doctors. In that conversation they mentioned the idea of "quality of life" again. I was confused that it even got brought up in a conversation because we truly believed you were progressing so great and weren't about to even have that discussion, especially because you were progressing. Since the idea of progress still wasn't crystal clear, the nurse suggested that I speak with the Neonatologist. I had been seeking for clear, cut and dry answers and he was the one that was able to give me that information. Our experience has been, that most Doctors/Nurses don't want to say too much but we felt it was time to know the clear truth. He spoke to us very clearly and fairly. He stated that your progress, that was so commonly reported by the nursing team, didn't necessarily mean you were getting better. He explained that what the nursing team meant by progress, was defined as you being stable. The topics that we feared speaking about began to be the center of conversation around your bed. Topics of bed ridden, ventilator dependency, heavy medication, quality of life, etc. Annie, this caused me and you mother so much pain knowing that we would have to face topics that we had thought were long behind us. We knew that we wanted to really understand what the rest of the medical team thought about your progress so we decided to prepare our questions for the care conference Tuesday, July 8, 2014.
Annie, your mom and I were extremely nervous that the third Care Conference with the medical team was going to be a lot of listening to thoughts and opinions we had been dreading to hear these past 4 months. We knew that we couldn't do this a lone, so in preparation for this meeting your mom and I fasted on Sunday and attended the Draper Temple on Tuesday morning before the conference.
Our first conference was at 10:30 am with a group called Rainbow Kids. They are the liaison between the patient, the patients family, and the medical team. Before we formulated questions for the medical team, Rainbow Kids suggested that we define "Quality of Life" and what your mom and I believed it to be. We believed
- One of our first goals for you Annie was to not be confined to the hospital bed. We wanted to someday bring you home, and even though it would have taken years and would require consistent medical attention and care at home we were willing to endure that to have you home.
- Our second goal was that you wouldn't be confined to a bed at all. Our goal is that you would have the ability to experience life to the fullest of your capabilities although your capabilities may be limited. Not being confined to a bed does not mean you wouldn't have difficulties, walking, going up and down the stairs, eating, bathing, and going to the bathroom. Your mother and I were prepared to make up where you may lack because you are our daughter and we would do anything for you.
- Our last goal would be that you would have the opportunity to be stimulated, feel happiness and sadness, have joy and sorrow, and have the ability to interact with others cognitively. We hoped that you would have the opportunity to go to school one day and interact with others with similar disabilities so you might know the importance of relationships.
After defining what we believed "Quality of Life" to be we composed the questions we wanted to ask the Medical Team.
We set guidelines that we wanted to be given clear, cut and dry answers to the questions we asked to decrease the probability of miscommunication. We knew that we were going to have Neurology, Respiratory, Muscular/Developmental, and your Primary Nurses present and we wanted to make sure there was participation from each of their respective fields. We formulated the following 3 questions:
- Is Annie progressing Neurologically, in regards to her breathing, Muscularly and Developmentally, and regarding her comfort? We wanted each of the professionals give their progressional opinion.
- Where do each of the professionals see Annie in 6, 12, and 24 months from now based on their experience?
- Based on what we believe "Quality of Life" to be, do you think Annie is more or less likely to achieve that life?
- Is Annie progressing Neurologically, Muscularly and Developmentally, in regards to her Respiratory, and regarding your Comfort Level? We wanted each of the professionals give their progressional opinion.
- We first started with the Neurologist. She mentioned that after more studying of the MRI they realized your brain wasn't as developed as they would have liked. If you were to look at your brain from a birds-eye-view and traced around it, your brain looked like the shape of a cloud; when a baby's brain of your age should look like the shape of a Daisy. The neurologist that studied your EEG (tests and monitors brain waves) said that your brain waves lack in variation. This is concerning because the waves don't vary from the time when you're asleep to the time you are wide awake. They also said they had been reading EEG's for over 30 years and had never seen anything waves like the ones your brain put out. They mentioned that based on their expertise and experience, you would not be cognitively able to interact with others. Thus not progressing but progressively getting worse.
- We moved on to the Development and Muscular Specialist. They discussed their concerns about your growth being an issue. They basically said you took after your dad and you weren't necessarily getting taller just wider ;) Don't worry Annie, you are much more prettier than I am. They discussed your future and told us that we should expect you to have multiple reconstructive surgeries on your bones, muscles, tendons, etc. to increase your comfort and quality of life. The short-term concern is that you would not grow big enough to qualify for a home ventilator, which is 10 kilos, and this would take months, if not years. This made us heart broken because we truly believed that we were so very close to bringing you home.
- Respiratory voiced their concern about you being dependent on a ventilator. They agreed that your episodes had decreased in number but you were still very much dependent on the ventilator. Although the ventilator was only giving you 10 breaths per minute, and you were doing all the work, the ventilator was offering you consistent pressure to keep your little lungs upon long enough to enable to you to take a breath. The specialists believe that you would always be in need of consistent pressure. And your life would always depend on the ventilator. The team voiced another clear concern. Given that you had a tracheostomy and a g-tube, they said that you would be much more susceptible to pneumonia, bacterial viruses, etc. because of your internal body being easily exposed to outside agents.
- We then asked for the nursing team to please be honest in the updates on behalf of your pain and Comfort Level. The last thing we wanted was for you to be in pain. Each of your loving Primary Nurses told us that it had been awhile that they had seen you awake and happy. They mentioned that you were in one of two states, asleep and peaceful, or awake and upset. The team assured us that they could treat the pain long-term with medication but that you would either be so loopy from the medication that you wouldn't interact or you would be consistently sleeping. We can say as your parents Annie that this is true, and it had only gotten worse the last few weeks. I think that is the hardest part about being your dad is that I love you so much. So much that I wanted to be able to fix you and am humbled when there wasn't anything I could do for you when you are in pain.
- Where do each of the professionals see Annie in 6, 12, and 24 months from now based on their experience?
- We actually decided to have your Primary Nurses talk about the near future and where they believed you would be in the following timelines. EACH of your nurses stated that you would be in the same bed for the next 6-12 months, and based on your current progress, you would probably be a lot worse off. Many of them believed that you would either be worse off or that before you reached 24 months, your purpose on this life would be fulfilled.
- Based on what we believe "Quality of Life" to be, do you think Annie is more or less likely to achieve that life?
- I was really beat down with sadness and fear but decided to ask one more question. "Based on what Jess and I believe to be "Quality of Life" do you have a glimpse of hope that Annie would one day achieve that?" The nurses and Doctors didn't say a word, they shook their heads no. In desperation, I affirmed them that Jess and I were prepared to do the hard things that most every parent does with a special needs child, change diapers, feed them, help them up and down the stairs, help them get dressed. The team helped us realize that they weren't even optimistic for even that type of a lifestyle for Annie. They reminded us very quickly that it wasn't just a physical deficiency, or just a mental deficiency, or just a breathing complication, or just pain, or even a muscular disability, it was everything combined together.
