Afternoon stroll around the neighborhood. Her shirt says "World's Cutest Little Sister." How did they know??When we first began this journey, we read all the literature, took note of all the statistics and mentally prepared for the worst right away. It's easy to do. The doctors and medical journals all make it seem that death is at the front door. However, all these days into it, I have realized that Everly hasn't read the literature, checked out the statistics and is not prepared for anything other than her next meal.
All this to say, that while her diagnosis will not change, our treatment plan for her can and will. We are home under Hospice and will continue to be so as they are incredibly helpful. However, we are taking Everly's lead and are seeking ways to help her overall as opposed to just a wait-and-see plan.
We have plans to visit a Speech Therapist in a couple of weeks who hopefully can help us teach her how to latch on for nursing. Again it will be only for minutes but precious minutes nonetheless and I will take every last one. In order to assist Everly with this and to help keep her feeding tube in place, we will visit her GI doctor this Monday to transition the tube to her nose. I don't like this idea but would like to give her the opportunity to nurse and possibly take a tiny portion of her feeding via a bottle, though we fear that is very unlikely. The upside: to ensure the first placement is accurate, an x-ray will be taken and because of her small stature, we will get to see a current view of her lungs. The other upside: we will have this new and current x-ray to take to her pulmonologist on Friday. Physical therapy hopefully will soon follow speech. Our daily grind of twice weekly trips to varying doctors and specialists shall continue as we seek to help our daughter live comfortably and improve her life as much as we are able.
The most exciting news for the week for us has been her heart diagnosis. No, there has not been an additional finding; rather, quite the opposite, in fact. I called the R.N. who is our cardiologist's nurse and asked her to read me the official medical diagnosis in Everly's heart. I knew the two major things but wanted to know the specific wording. When she read the three things the doctor had noted, I noticed that she left off Double Outlet Right Ventricle. I promptly asked her about it and she said that according the doctor's notes, once the PDA (Patent Ductus Arteriosus) closed after birth, it appeared Everly has more of a large VSD (Ventricular Septal Defect) alone than the Double Outlet in addition. Say what?? Just in case you left your Merck Manual at home, the Double Outlet is much more complicated and is significantly more threatening to her heart's ability to function. The nurse said we were told this in the hospital and it may have been the case but with all that was going on, it seems we missed this enormous piece of news. Regardless, we were beside ourselves with joy at the new "old" news.
Checking out her toy
Aside from the mostly medical updates and doctor visits that seem to flood our weekly running tablet, we have also been continuing to love our little girl and give her experiences. For example, to check off bike ride from her baby bucket list, we went on a family bike ride last Sunday through the neighborhood and to the park. It was a beautiful, warm spring day and perfect for such an outing. While I won't lie and say it was the easiest jaunt we've ever taken, I will tell you it was the most memorable. Yes, we did have to stop every few minutes it seemed to check her ever constantly beeping machine. Yes, it took us nearly 45 minutes just to get from the house and to the driveway packed and ready to leave. And, yes, it was a lot of work. But, it was worth every ounce of preparation to have the experience with her. If you have not guessed it by now, you must know that our family enjoys and participates in mostly outdoor activities. So, to be able to take her along with her oxygen and all her machines on this special day outing, it was joyful for all of us.
In addition to that big trip, we purchased a jog stroller for her this week. While we have a regular one, we needed one with all-terrain wheels so we can take her on our hike trail. With the weather heating up, I have been concerned about continuing to put her in my sling when we go hiking. Besides, laying her flat is best for her airway and her breathing. She wasn't sure about the bumpity bumps mid-way through the hike but at the beginning and in the end, they didn't seem to disturb her. Love getting her outdoors!
Since we have the new jog stroller, we decided to spend the day at the beach today and enjoy sunset together. Again, the weather was perfect and fit for a beach outing...sunny and not one degree too hot. Just perfect. We did have to watch her very carefully today, though, as she continuously desated and we did need to give her 02 periodically. Normally she is well-oxygenated when we are outdoors but today she seemed to struggle with it. Thank goodness we are going to the cardiologist on Monday and will have a repeat echo (last one a month ago before we left NICU). But overall the family did have a fantastic trip to the beach and enjoyed ending it with a coral pink Florida sunset.
As I end this journal entry, please remember to pray specifically for Everly to have a good report from the cardiologist on Monday and that her echo is clear. Please also pray for comfort for her and for the discernment of the doctors treating her. Please pray for peace and calmness to radiate during this tumultuous time for our family.
I also ask that you pray for Everly's new unborn friend with T18, Elisabeth Maxine Scholes, who is due at any moment. She has a CaringBridge site as well under her name.
Please continue to share our website, her Facebook page Love For Everly (my friend, Courtney, who updates that has been out of town but we will have new pics and info again soon), and my FB page (Crystal Hopkins) where I tend to post my favorite daily pics now.
Doctors have no answers why these genetic conditions exist and there is no cure whatsoever for them. Please help to spread awareness about this so little known condition so that more research can be done and the population in general educated. We didn't even know or had ever heard of T18. You know what you find when you google T18, but help our family and the entire Trisomy 18 family know what the face of T18 truly is. It's not a life filled with sadness and sorrow but rather it's a life of pure love and joy. That is what Everly gives us and we want everyone to know she's more than the medical journals say about her. She is perfect!
Psalm 18:30 As for God, his way is perfect: The LORD's word is flawless; he shields all who take refuge in him.
With love and appreciation,
Crystal
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