Never a Dull Moment

Last Wednesday, Hannah had an ultrasound of her pyloric muscle to determine if she has pyloric stenosis. The ultrasound was rather fuzzy and we couldn't get a very clear picture, but a radiology consultant said "It's probably fine" and that was that.  I think we are still going to get a follow-up GI study done in the near future, because "probably fine" isn't super definitive in my opinion. We also had her nutrition levels checked, called a prealbumin blood test. It checks protein and nutrient levels, as well as organ functions. Gratefully, the test showed normal function and nutrition aside from low iron. We're going to give her an iron supplement and continue with her established feeding regimen.

I didn't take enough pictures this week

This Wednesday I was concerned that Hannah might be getting sick. She has a really wet cough and since her cough isn't very productive, I always worry she will aspirate to her lungs. There is a Facebook group, albeit small (about 20), of parents with babies who have CA, and many of them had aspiration pnemonia multiple times. Hannah does have some wheezing on both sides of her lungs but the doctor said it's not aspiration, and Hannah tested negative for RSV (Hallelujah!!)  We also got a one-week standing order for the suction clinic, which provides BBG suctioning outpatient at the hospital.  If I'm not able to clear her nose and throat with a bulb syringe or my NoseFrida, that is a logical next option for us. We went there once about a month ago, and it was very helpful. (PS The NoseFrida is awesome!) Her oxygen was excellent and she does not have lung retractions or a fever.  As long as she stays that way, we'll be OK. A respiratory infection will most likely delay her surgery by a month or more when the time comes.  It's so hard to keep the sicknesses at bay in a house full of people!  I have 3 kids in public school and a two-year old thumb-sucker, so who knows what germs are lurking around in here!

I had to un-sew Hannah's sleeves so she can flex her hands rather than make a fist constantly, and so that she can explore putting her hands in her mouth. I get serious anxiety whenever I think she's about to pull her NG tube out or the tape is coming loose. We are getting good at putting it back in but it is stressful for me and Hannah.  We probably have to put it back in and re-tape her face about once a week.  She is steadily gaining weight while getting 27 mL/hour through her NG tube. I am trying to go up incrementally, but she's picky about it, and her wet cough showed up right when I tried to go to 28 mL, so I went back 2 days later. I'll try again soon. 

Only one in diapers...that's a relief.

I gotta say, five kids is really busy and a lot of work.  And so loud. All my peeps want dinner every single night (the nerve!) but often complain about what is served, dishes are constantly piling up, laundry is an endless, eternal pain in the neck, and caregiving is exhausting. They have homework, church and school activities, I have a weeknight church assignment, we have several doctors appointments each week. We all have emotional needs. I'm pumping 4 times a day.  Hannah wants to be held constantly and seems to wake up the moment my head hits the pillow for a power nap. Last weekend I was pretty much running the show solo while Chris recovered from a minor surgical procedure, and I was also potty training Lexie, finally having a breakthrough on day seven.  (5 kids is plenty...I'll let you conclude what kind of surgery he had).  And did I mention the sheer volume of laundry? 

Our 2005 little red Honda is on its last legs (I guess cars don't have legs), and so Chris has been riding the train to and from Draper and leaving the car at the Draper train station to only go the 5 miles to and from his office. So rather than 250 miles a week commuting, he drives 50 miles. We just have to make that car last a little longer until we can replace it. But this means a longer commute, leaving earlier in the morning and getting home later, plus only one car at home to get us all those places I mentioned. 

I think its funny that they each have a
facial apparatus and tube of some sort. Haha!

I know they are Worth It and this is what I signed up for, but being Busy with a capital B is really hard. I have a to-do list ten miles long and some of it will probably never get done. I'm self-medicating with snickers bars and Mountain Dew.  Lets me honest, this momma needs therapy and anti-anxiety meds, and that's two more appointments to keep.  I wish I had more time to read, but whenever I have down time it's something mindless like Facebook, Netflix, or a game on my phone. I realized this morning that Leah will be a senior in High School when Hannah starts kindergarten.  This circus show is only getting started!  I keep thinking it should be getting easier to manage, but its only going to get harder and it will be like this for a long time even when Hannah is better.

I need a serious change of heart and mind, because I'm going to be doing this for many years to come, with increasingly busy kids with new and varied challenges. I have to figure out how to do this with a better attitude and more patience, more organization, etc. 

At least somebody likes the snow...

So far I have a few strategies for dealing with everything.  I have a notebook with all of Hannah's health information, growth progress, feeding changes, doctors appointments, phone numbers, and more... Doctors always seems surprised or impressed when they see me taking notes or referring to my notebook. I have a really good, no-fold laundry sorting set-up (which works great when I actually get around to it).  The kids are expected to put away their own clean, sorted laundry and help with taking out garbage and loading and unloading the dishwasher.  I'm recommitting to menu-planning to save on groceries and shopping frequency. Leah and Samuel are old enough to babysit the other kids and a sleeping Hannah if I need to run a quick errand. Chris is using FMLA leave a few morning hours per week in order to help get the kids out the door and allow me time for a shower.  I'm praying more (did you know that you can pray that a two-year old will pee in the potty and then she will?). I'm going to therapy and taking anti-depressants. I try to get out of the house for girls game night or a $1 movie. I got a cute new haircut.

I always feel like I need to end my posts on a positive note, so here goes. Hannah is healthy and growing. The other kids are (mostly) staying healthy and progressing in their respective spheres, whether it is a science test, times tables, reading new sight words, or going potty and moving to a big-girl bed. We are trying to still have meaningful experiences with them. Chris and I are re-learning how to manage our hectic household, although probably not very gracefully.  We have been incredibly blessed by friends and family and strangers, and countless prayers. My sister's homeschooling Co-op had a bake sale and decided to donate their proceeds to our YouCaring fundraiser, and they are in Illinois! My friend Stephanie donated her time and talents to take our family portraits. Ward members and friends have been babysitting and providing dinners and even helping clean my house as needed (a Ward is what we call our local church congregation).

Although fortunately no one has said this to me, I've often heard people say of someone else's trying circumstances "I could never do that" or "I don't know how you do it" and what I really think it means is "I don't want to have to do that" or "I'm glad I don't have to." And to be honest, I really wish I didn't have to either, but I tried not to ever say or think it because I knew in my heart that if I needed to I would Rise to the challenge and become a Warrior for my child.  And here I am clumsily working on my Warrior badge.

Shoot.  Someone just threw up. Gotta go.