It’s been a warm, weird winter so far. January was pretty uneventful, but we did have to take a late-night trip to the emergency room after we discovered that Leah’s g-tube was out and her stoma completely closed. It was a pretty miserable trip, but somehow we managed to land there on a night when Leah’s surgeon was in the OR at 1AM, so he came to check on us after his procedure and was able to get the stoma open again using some small torture devices called dilators. We are very grateful; the ER doctor was unable to get the stoma open himself, so had her surgeon not been there, Leah could have been looking at a new g-tube placement surgery.
January also saw the loss of one of our Ronald McDonald House family members. I don’t know if I have talked about this family on the blog, but I know I have shared their story on Facebook. When we arrived at RMH in 2013, there was a family there from Guam who had a son in the hospital for a pre-leukemia blood disorder. His older sister was a perfect match for him and was going to be his bone-marrow donor, but about mid-way through the summer, I was in the laundry room talking with his dad when the younger sister came in and said the older sister was being taken to the hospital by ambulance for an incessant nosebleed. She was diagnosed with the same condition, and her brother passed away shortly thereafter. Unfortunately, big sister passed away on New Year’s Day. She fought long and hard and had a successful bone marrow transplant, but she had an allergic reaction to shellfish, and that triggered graft-vs-host disease, which ultimately took her life. We are so sad for this family’s tremendous loss.
February has also brought terrible loss. When Leah was about five months old, I posted a blog entry about the odds of being Leah. We received a comment on that post from the mama of another little girl born just a few months after Leah with Down Syndrome, long-gap esophageal atresia and holes in her heart. Through Facebook, we got to know Audrey, the little sweetheart who shared so much with Leah. We became friends with Audrey’s mom, who soon started calling the girls soul sisters. I wish I could tell you that these girls will grow up together as pen pals and FaceTime buddies. Unfortunately, Audrey was hospitalized with a cold this winter and her condition took a downward spiral as she experienced multiple respiratory complications as a result of her EA/TEF. She was placed on ECMO for several weeks, but her struggle ended last Wednesday, February 18. Her memorial service was live-streamed this morning, and although it was absolutely heartbreaking, we were glad for the opportunity to support her parents and brothers in celebrating her life.
As requested, we have given Leah extra hugs and kisses and squeezes from all of our friends and family members who have also grown to love Audrey and who are also grieving her loss.
Leah is beginning to make more progress in the area of oral feeds. At present she is getting roughly 20-40% of her daily caloric intake by mouth. Feeding is a long and arduous process; it takes a good hour, at least, to get 70-100 calories in her. We got adventurous on Saturday morning and gave Leah half a scrambled egg – resulting in Ms. Bug’s very first ambulance visit. It appears our bug is allergic to eggs. She really enjoyed the scrambled eggs, which makes it even more of a bummer that she can’t have them – it’s hard to find high-calorie foods that are reasonably healthy and soft enough for Leah to swallow. Aunti Staci came over just as Leah was finishing up with breakfast, and within a few minutes, Staci pointed out that Leah had a bunch of hives on the back of her neck. It almost looked like she had been attacked by a mob of angry mosquitoes. She had them all over her back and her abdomen. She didn’t appear to be in distress, so I tried calling the advice nurse, but they told me it would be a 2 hour wait for someone to call me back. I then tried calling the pharmacy to find out what the proper dosage would be for Benadryl, but they put me on hold and after 15 minutes I gave up and looked it up online. We gave the Benadryl and then I called the advice nurse back and insisted that someone talk to me RIGHT NOW – Leah’s O2 saturation was fine and she seemed to be breathing well enough, but she was looking pale and her lips were starting to get a blue tinge around them. That seemed to improve with the Benadryl, and the nurse was just about to tell me to keep Leah on observation when Leah started trying to throw up. The nurse told us to just bring her in to the ER. Unfortunately the ER is quite a drive from our house and we didn’t want to risk getting stuck on the freeway with a child having what could develop into a dangerous allergic reaction – apparently the reaction can evolve from hives to anaphylactic shock. So we dialed 911, and Leah experienced her first ambulance ride, siren and all. At the hospital they gave her more Benadryl as well as a steroid, and sent us home after a few hours of observation (and another, less severe breakout). Today, one of her doctors gave us a prescription for an Epi-Pen. Hopefully we don’t have to use it.
So that’s our update. Oh – and Leah now has 2.5 teeth. The third one is just coming in.
BTW, in case you were wondering? Yes – Mama’s nose was in fact broken.
Below are photos for the month of December. I’ll try to post more photos soon so I can get caught up.
We discovered the ridiculous adorable-ness of tights with Mary Janes printed on them. And oh – we now love to stand up. Or at least, we did in December. Now we are in a “twist and plunk” phase. When you stand Leah up in front of you, she twists and then plunks into your lap.
Hanging out with our little cousin. Leah almost tipped this kid over trying to pull herself to standing. That was her Thing in December – grab the hands and pull to stand. Now it’s grab the hands, pull to stand, twist and plunk.