I have been procrastinating journaling about Daphne's health for a long time. I wish I had been better at writing down how I felt throughout it as something I could read and draw back on when future trials come, but I didn't. I do know though, that every time I face the impossible, Heavenly Father reminds me that with Him nothing is impossible. I need to remember that every time I face a challenge in life and look back on past challenges and see how He was there for us the whole time. For that reason, today is the day I am writing this on my blog so that our family can look back and see how much Heavenly Father was there for us. I also want to write it for Daphne, so she can look back and learn of how strong of a little girl she is. I admire the strength within her.
Daphne- There are so many special and fun things about my sweet little girl that I could tell, but the one thought that stands out the most to me that I want everyone to know about her is how strong and optimistic of a spirit she has. Very few people know of the health implications my almost two-year old has fought for most of her life, and wouldn’t know, because she is always so happy (and hyper!) and has such a special spirit about her. There is no one out there that I know that is as strong and capable of facing challenges with such strength as her. She is a great example to me of living life to the fullest despite the obstacles along the way. She teaches me daily not to let hard moments get me down. She sure is hard not to love.
Throughout Daphne's life, she has received many priesthood blessings. My testimony of the power of the priesthood has grown immensely. I know that Daphne is here with our family today because of the blessings she has been given. One thing that has stood out to me in several of her blessings is that she is here on this earth for a reason. She is a strong spirit here to _____________________________________.
So, to start explaining Daphne's story from the beginning. From birth, Daphne has always had a weaker digestive system per say. She struggled majorly at birth with reflux and could not keep food down. It took us a few months to figure it out, but between special formula regiments and strong medication she started to grow. Her tummy was super sensitive to different foods from the beginning. Over time we learned what foods she could and could not handle, the biggest culprit being dairy (which runs in the family and causes sinus issues...with Daphne it effects both her tummy as well as her sinuses). She also was majorly prone to ear infections. She got them very regularly. When she was 15 months old, we had tubes put in her ears. It was the best thing ever for her. It helped her walk and she started to talk so well! Prior to this, she had learned a few words here and there but not like she should have since she had so much fluid in her ears. It was awesome to start hearing her call us "mama" and "dada".
I mention all of this because now looking back, I can see how it masked a more serious issue and how both things unfortunately contributed to it. Anyways, between Daphne's tummy and her ears, we had gotten pretty used to her having good periods of health and bad. It was fairly normal for her to be awake for hours on end in pain. I remember weeks without any sleep when we first figured out her dairy allergy as well as some weeks like that when she had bad ear infections.We also thought she struggled from "Night Terrors" and maybe she still did??? Almost every night she would start screaming uncontrollably in her sleep and it was almost impossible to console her. I honestly think some of it was night terrors (As things would improve slightly as we followed guidelines for night terrors when it came to sleep regiments) but most of it I do think was caused by a rare case of recurrent cdiff (more on that in a second).
After her tubes were placed, we had a few good weeks and then she started to become really sick again. She would cry uncontrollably in her sleep every night. Most nights Dan and I were terrified and just didn't know what to do. We contemplated taking her to the ER almost every night and more than once, we loaded her in the car and she would fall asleep on the way there, so we would turn back around and come home. She also was starting to vomit and have diarrhea more and more frequently (which I failed to mention before, has always been a "normal" occurrence for her between reflux and digestive issues). I distinctly remember on multiple occasions having the impression that something serious was wrong and that if I didn't figure it out, something very bad would happen. Call it mommy intuition or whatnot, but I know the Holy Ghost was prompting me to figure it out and not chalk it up to just her normal digestive issues.
So, in August 2013 I took her to the doctors determined to figure out what was wrong. They tested her for all different things, including CDiff, which is a bacterial infection in the intestines, which came back positive. CDiff is a bacteria that is transmitted through fecal matter. It is EVERYWHERE. Everyone is exposed to it and has some in their gut, but only those that have a gut compromised enough for the CDiff to populate, become sick. It is most common among elderly, many in nursing homes die from CDiff and outbreaks within a nursing home can occur. Among the normal healthy population, it is extremely rare. If I remember right, when I did a lot of research it was less than 1% likely for Daphne to have it, but yet she did. We learned that both the medications she had been on for her reflux as well as the antibiotics she had taken for her ear infections, can lower the amount of good flora (bacteria) in your GI, thus increasing the chance for bad flora to take over, which in Daphne's case it did. It was still quite rare for her to have CDiff, but at least we knew why she had probably been more likely to contract it. Treatment for CDiff was an antibiotic, so that's exactly what we did, we gave her the antibiotic, which didn't work. So they gave her a stronger antibiotic, which didn't work. So we did the stronger antibiotic regiment for a 6 week period of time with more doses (we gave it to her every 4 hours, even during sleeping hours), which didn't work either.
At this point, she was seen at Primary Children's Hospital and diagnosed with recurrent CDiff, meaning she had a strain of it resistant to antibiotics that kept on coming back. Through talking to them, we figure based on her symptoms, she had contracted CDiff early on in life, probably around 9-10 months old (and she was 20 months at this point). We feel extremely blessed that despite the challenges she faced, she had lived a fairly happy life. Doctors were shocked she wasn't super sick and hospitalized at some point over the course of time. They told us she was lucky she hadn't been hospitalized and potentially died from this. Reading the death rates online are ridiculously scary. Not good odds, but yet, our little girl struggled for sure, but lived a great life and was a happy girl who got to do fun things and live a fairly normal life. We are unbelievably blessed. Primary Children's gave us two options: to try the antibiotic again, giving it to her in different dosages and frequencies that they found more successful or to put her on a 2 year trial drug that had just begun. We prayed and fasted about it and felt like the trial wasn't the right thing, so we went with the first option, which did not work either.
At this point, it was December 2013/January 2014 and we met with Primary's again and made the decision to do a clean out of her intestines, which was through a colonoscopy (which they also wanted to do to make sure she didn't have anything else scary going on in there so we did it for testing purposes as well). She also had an endoscopy as well as a bunch of other tests done to make sure she didn't have any autoimmune diseases or anything that had made her more susceptible to contracting the infection. Thankfully, everything came back negative, other than some rare cells in her throat that explained a lot of her reflux and vomiting issues. Unfortunately, the clean out didn't work. I remember being very discouraged at this point. Our family had prayed at fasted for her. We prayed constantly for her recovery and I started to lack faith that the trial would ever end. I was so frustrated to watch my girl continue to have something that could take her life if it ever got bad enough again (all the antibiotics and treatments seemed to help keep it at bay, but never solved anything). Note to self, never stop trusting!!!
So, come February, we decided to do a fecal transplant, which is where they clean out your intestines and implant healthy stool in hopes that it will make it to where your intestines are filled with healthy flora that can fight and take over the unhealthy flora. Basically, similar to giving someone a gigantic dosage of probiotics. As gross as it sounds, it's kinda cool at the same time. We felt very good about the procedure. It is becoming more common among adults, but not so much among children yet. Daphne was the 7th patient to have this procedure done at primarys and with so little research on the effects of children, the doctors felt extremely hopeful it would work, but there wasn't any statistics out there to say what her chances of success were. Nor was there any research to show how she would do afterwards with healing and her health over time. Despite all that, it really was our only option, and we felt very good about it. The soonest they could get her in was on her birthday. Hence, this is her birthday post as well. I felt pretty darn guilty putting her through another surgery on her birthday, but at the same time, knew that if it worked, it was the best birthday present we could ever get her.
For both her procedure in January as well as this one, it required her to be on a liquid diet 4 days prior to the procedure and completely fasting 24 hours before. She had to drink the same yucky stuff every few hours that adults do when they have colonoscopys done (which made her very nauseous) as well. So what do you do with a toddler who can't eat for days and can't drink the last day?? You distract her MAJORLY! Oh and you make her wear like 5 diapers (one on top of the other) at all times and bring lots of changes of clothes every where you go since the purpose of all of this is to "clean" her out. If a toddler can do it, any adult can! My mom decided after Daphne having two colonoscopys in two months she could suck it up and go get hers done. Haha.
So the pictures below are of my mom helping me distract her at the duck pond/park the day before her procedure. She loved having grandma there to play with her.
Day of the procedure/her 2nd Birthday. I have to say, I LOVE Primarys. The do such a good job at making the kids feel comfortable. There is such a sweet spirit to the place as well. I love that Daphne can watch movies, play with toys, etc all while waiting. I love that all the doctors and nurses will sing to her, blow bubbles, basically do anything to distract her as they prep for surgery. Such a great experience. Daphne loved watching tv and playing with an extra stethoscope they had in there.
Then the waiting game began..... best part about it all? I felt so blessed while she was in there. I was overwhelmed with a sense of peace knowing with how much our Heavenly Father loved her and how he would take care of her. I strongly felt that today was an answer to prayers and if I just trusted in Him, all would be well. Primary's is such a humbling place to be. Every time I go there with her, I am overwhelmed with how blessed we are in our trials. It is hard to watch parents next to you that have children in brain surgery to remove a tumor or something just as bad. Yes, Daphne unfortunately has been quite sick since birth, but she is so blessed. So so blessed. I felt so much at peace. I knew everything would be all right. When I finally let go of my worries and trusted in Heavenly Father, the answer to my prayers came.
Early that evening, we finally got to leave!!! Daph was so excited to ride in the wagon out. She knew that the "fun ride" meant she got to go home.
When we got home that evening, it was already passed bedtime (between getting something to eat and horrible traffic, it got late really quick!) but we wanted to make sure Daphne still had a Happy Birthday ending to the day. My mom delivered balloons and stickers for her while we were gone and Daphne was soooo excited to see them when we walked in the door. It made her day!
You may have noticed in the picture above that her baby's head doesn't look quite right.... well yeah, let's just say, I sanitized the whole house before we left for her procedure, including her favorite baby.... it didn't like the heat in the washer too much. I felt so bad when we got home and I got the baby doll out to find her head sunk in! Worst part about it, is that Dan and I got her presents for the baby doll for her birthday! Oh well. She still tells me to this day that the baby has an owie and that I need to fix it. Haha. Sorry kiddo.
I can't help but laugh when I look at the picture on the right of her feeding her baby with the squished head. Heehee. She got a diaper bag, bottles, and diapers for her baby to use.
Happy birthday my sweet miracle girl!!! I am happy to say, that although the next several months following your procedure were hard (recovery and healing have been rough, almost worse than the illness was, but time heals all!!!), it was all well worth it. So glad you faired much better than your baby did on this special day.
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