The Latest

Here is the latest news on Nora:

Three weeks ago Nora started on predisone to calm her immune system and get the inflammation under control. She promptly got a bad cold which she couldn't fight off and became very sick. It was a really rough week for her. Her antibody test came back indeterminate, which definitely doesn't mean she doesn't have Crohn's (anywhere from only 40% to max 70% of IBD patients have the specific antibody pattern), but the doc wanted to run some additional tests just to be sure we weren't dealing with another autoimmune disorder that was affecting her GI tract (all tests were negative). Dr. Pickens also sent her biopsy tissue down to Dr. Heimen in San Francisco who will look over them with his pathologist to make sure nothing got missed. I would also like to mention that they are doing this for FREE. We have wonderful doctors.

Anyway, the week was filled with lots of blood tests, doctor check up's, and stool tests (I am a pro at collecting poop now...if there was a degree in it I'd totally have it - Jennette Worton, Doctor of Poop Shovelling). She lost weight and was all around miserable....however, her blood work was PERFECT!! No anemia, white blood cell count was normal, and all her inflammatory markers were ZERO. The prednisone had done its job splendidly, so we took her off it immediately, and a few days later she got much better (and popped 3 teeth out).

She has now started on sulfasalazine, a topical anti-inflammatory drug that has no immunosupressant effects, which is good and bad. Good that she will be able to somewhat fight off bugs that come her way, but bad in the sense that the drug technically isn't helping the underlying issue of the disease, just helping the symptoms. However, since we don't know a lot about the progression or severity of her disease yet, I think no immunosupressants is a good thing, especially with how well she is doing this week. She is so bubbly and happy, laughing all the time, giving high 5's, saying new words, playing with her sis, chasing the cats. After lots of help from Grandma Lee on Saturday night she is also now taking a bottle, and since yesterday she has even started taking her special formula - yay!! She is definitely on the mend and I couldn't be happier.

Once again, THANK YOU to everyone for all your help, your thoughts, prayers, and encouragement.

A Diagnosis

For those of you who already got this email, sorry for the repeat:


This week Nora was diagnosed with Crohn's disease, an autoimmune disease that affects the gastrointestinal tract. It is extremely rare in infants and we owe a lot to our wonderful pediatric GI, Dr. Pickens for being stubborn enough to figure out what was going on with our poor little baby. Yesterday Tom and I met with Dr. Pickens and a nutritionist to talk about treatment options, which unfortunately are limited with Nora being so small and so young. It is very different then treating an adult patient or even an older child. Some doctors (Nora's included) believe that Crohn's starting in infancy is actually a separate pathogenic subgroup of the disease, one that unfortunately is still a big mystery in many ways. But the good thing is that research is being done and doctors are finding out more and more each year.

According to Nora's tests (endoscopy, upper GI and colonoscopy), the disease is, at this point, affecting her esophagus, duodenum and ileum (in the small intestine), and in every part of her colon that they took biopsies in. It is extremely painful for her, and it is making her anemic and deficient in various vitamins and minerals and stunting her growth due to the villi in her small intestine being unable to do its job (absorb nutrients) because of the inflammation. However, even among the painful disease and procedures and tests over the last 6 weeks Nora has for the most part stayed a cheerful, smiley, happy baby. She is a fighter in every sense of the word.

This week Nora started on prednisone, a steroid that will suppress her immune system and calm the inflammation. Because of the severe side effects of steroids Nora can only be on it for 4-8 weeks, at which point she will move on to an immunosuppresant called Imuran, which is one of two drugs that comes in a dose small enough for Nora. It has some scary side effects, but we will be staying up on them with weekly blood tests for the first few months, then every three months after we get her up to the right dose and feel good about how it is effecting her body and working on the disease. For the next few months we will have to be very careful in doing everything we can to make sure Nora doesn't get sick - because her immune system is suppressed she will get sick very easily, and because of her disease any diarrhea or vomiting or fever can be very dangerous for her. We love you all, but if you are sick STAY AWAY!!! :-)

We are so fortunate to live where we do and have two amazing children's hospitals withing 40 miles of our house. Dr. Pickens also used to work with the leading inflammatory bowel disease expert on the west coast (Dr. Heimlen in San Francisco), and he has already consulted on Nora's case. We are also blessed to live among so much family and such wonderful friends who have overwhelmed us with their love and support. Thank you!

Today's Update

I know, twice in two days - it's amazing, what can I say.

Just wanted to give a quick update on Nora. She slept relatively well last night and seems to be feeling a lot better today. She had some good laughs with Harper and seemed to be a little more of her feisty, happy self. She does seem rather fatigued and tires easily, that is probably from the anemia. But all in all I feel like I can get back to focusing on more important things like setting my sister up with Nora's doctor.

Nora

I typically like to keep my blog light and funny. No, my life isn't all rainbows and sunshine, I just like to amuse you all with a hilarious spin on motherhood, work, school and all that goes along with those things. Obviously there is some serious crap involved, but personally I think blogs should be funny so I like to turn that crap into lemonade....er something.



However, most of you know that my 9 month old daughter Nora has been struggling for most of her life with pain that we don't know the cause of, and many have asked for an update this week after several procedures and tests. That being said, this post will probably be a downer. There's your disclaimer.



At Nora's one month check up her doc decided she had acid reflux and put her on Zantac. It seemed to work for a few weeks but she was back to screaming and not eating rather quickly. After a change to Prevacid we thought we had things under control until about 5-6 months old. Nora has never been a great sleeper - she typically wants to be held and even then she really only sleeps for a maximum of 3 hours at a time (if I'm super-duper lucky), but around 5 months she took a turn for the worse and was up most of the night screaming in pain. Most nights I "sleep" sitting up in bed with Nora on my chest, or Tom walks her around. Finally at 7 months after insisting to her doc that there was something else wrong he referred me to the GI clinic at Mary Bridge. We saw Dr. Pickens for the first time a month ago today and at that point Nora was off all growth charts and losing weight. He ran blood work and some other preliminary tests to find her inflammtory markers high, white blood cell count high, and red blood cell count low. Although very rare in infants, Dr. Pickens suspected Crohn's and did an endoscopy and flex sig the next week, which showed villi loss in her small intestine, blood in her stomach, and unhealthy tissue throughout her stomach and small intestine.. Biopsies were negative for eosiniphilic disorder (a white blood cell disorder), celiac (gluten intolerance), positive for inflammation, pointing again to Crohn's.



This week he did an upper GI with small bowel follow through (drink barium contrast and take x-rays ALL DAY while it goes through your system), at which point he was convinced it was Crohn's and even started discussing treatment plans. Wednesday we did a colonoscopy to "confirm", but it looked normal. He sent in biopsies anyway and redid her blood work, which showed her still anemic, and her white blood cell count and inflammatory markers almost doubled.



At this point Crohn's is still an option, but it is becoming more and more unclear. We are waiting for more blood results and biopsy results to take the next step. Meanwhile Nora seems to be getting worse each day. Up until the last week she has had horrible waves of pain and bad nights, but other then that has always been very happy, smiley and easy going. If you make eye contact with her she will give you a beautiful, big open mouthed smile. However this week she is not a happy camper at all. She couldn't eat for most of Tuesday and Wednesday because of the procedures, she became very dehydrated, and her blood work on Wednesday had to be taken from a vein in her scalp after being poked twice in each hand and foot. She normally loves to crawl around, get into things, stand up and cruise, but this week she just wants to be held and doesn't even have the strength to pull herself up anymore. Last night she screamed from 9:00pm until 2:45am. I definitely haven't been in denial - I am the one who has been insisting to her doc all this time that there was something wrong - however, this week has been sobering and depressing to say the least.



At this point I feel like I could honestly care less what her diagnosis is - I just want to know so I can take care of her the way she needs. Thank you to everyone who has been a huge support this last month with helping take care of Harper during all the many doctor's appointments, your words of encouragement and your prayers. I firmly believe that Heavenly Father guides people to our lives to help us through challenges and I have seen that this month more then any time in my life.

Harper Sings

The other day Harper asked to hold Nora, then said she wanted to sing to her, so I grabbed my camera. She normally does a much better job with her ABC's, but this was too funny not to post! Also, you might not be able to hear it, but at the very end when she pushes Nora's head down she's saying "Go night-night."

Women At Work

Sometimes life is full of surprises. I admit that I normally revel in these tiny unexpected moments of bliss, even sometimes when they might not be so blissful. I don't know, I guess there's a reason Tom calls me a Drama Queen. Call me crazy, but I like change - too much of the same thing really bores me.


However, I also do not like it when things don't go my way. I don't think I'm overly selfish, I just like to plan and I like to be in control of my plan, and I really don't like it when I'm not. My plan was to take four months off work after I had Nora - I have so much sick and vacation time saved up that I would have been paid my regular part-time salary for 2 of those months, so Tom and I figured we could go 2 months without. Unfortunately things didn't go as planned. It became glaringly obvious that the temp we hired (who was recommended by our CPA) was NOT working out about 5 days after I gave birth. I'd get 3-4 phone calls a day with him asking me the same questions over and over. It got to the point that it was more stressful babysitting this guy and fixing his mistakes then it would be to just go back to work and do it myself. At first I was extremely frustrated - not only because I didn't want to go back to work yet, but also because I really love my job and I didn't want to end up resenting it. But one of the reasons I love my job so much is because I have the best bosses in the world and they sat down with me and we worked everything out so that I would only have to come in once a week at the most. Tom also had to talk me down a couple times, reassuring me that everything would work out, and that he could stay home on the days I went into my office.

So two weeks ago I woke up at 5:00am - well actually I woke up at 2:00am to feed Nora who then refused to let me put her down, but I handed her off to Tom at 5:00am and got up to get ready to catch the train. It was kinda weird. Like I hadn't taken any time off at all, it was just back to routine as normal. It was even 30 degrees outside, just like my last day of work back in January.

My bag was packed with everything I needed to spend a full day away from my nursing daughter - a breast pump, milk collection bags, sanitary wipes to clean the pump, lots and lots of extra breast pads, and two ice packs to keep the milk cold on the train ride home. By the time I got to my office my boobs were already killing me, but I had so much work to do I had to ignore them for a couple of hours. By now my milk had let down three times and, fearing I would drown in my own milk, I decided to take a break and pump.

Even though I have my own office, I decided to pump in the bathroom since I have a rather large window by my door that looks right out into our reception area. At this point I only had my small one-boob pump (my sister sent me her big one last week, and even though it makes me feel like a cow, I love how efficient it is), so I took my bag into the bathroom and started pumping away. Like I said, I had been up since 2:00, and had only gotten about 2 hours of sleep, so sitting down without anything to do but listen to the (extremely loud) hum of the pump, I promptly feel asleep, right there on the toilet in the last stall of the floor's public restroom. I have no idea how long I was out, but it couldn't have been too long after I drifted off that I fell forward off the toilet and into the stall door in front of me. After I got my pumping back in order someone came into the bathroom and yelled "What is that NOISE??" I wasn't sure if I should just ignore her, or yell back, "IT'S A BREAST PUMP!" I tried to decide what to do quickly, but I was still kind of tired and maybe I hit my head too hard on the door, so I just sat there, pumping away, my mouth hanging open while I tried to decide what to say. Then the woman left without using the facilities, which I thought was kind of weird, but maybe she just had to look in the mirror or something. The other two times I pumped that day someone came in, which I found rather annoying because there's barely anyone on our floor and I almost never run into to anyone in the restroom when I use it. But I had been gone for almost two months, maybe some of the empty offices had been rented.

A week later I ventured back to Seattle with all my pumping paraphernalia. I grabbed the elevator along with 3 other women and while listening to the group's conversation I realized it was going to be a long day. One woman asked the other two women she was with if they had heard the buzzing in the bathroom yet. "No," they said, "It must have just been on that one day that you heard it." "It was weird," the first woman said, "because I know someone was in that stall but she didn't say anything." This is when I realized they were talking about ME. "Well she WAS in the bathroom, maybe she didn't feel like having a conversation." I was just staring at the floor trying to decide if I should pipe up and come clean that it was me when they turned to me and asked if I had heard it. "Umm...I don't know...what did it sound like?" Stupid! Why didn't I just say "Actually I think I know what you're talking about and I think it was my breast pump!" Then the four of us could have a nice laugh and be on with our day. But no. I had to act like I didn't know, and the answer I got to my question was, "Well to be honest, it kind of sounded like a vibrator." Great. Now I definitely couldn't own up to it. But it just got worse. "Oh my gosh," one of the other women said, "what if it was?! What if there's some perv in our building??"

And just like that, I was the Creepy Colman Building perv. The doors opened on my floor and I got off the elevator - halfway down the hall I wondered why I didn't just say "Maybe it was a breast pump." I would have dispelled any horrid rumors and I wouldn't have to admit it was me all along. More people came into the bathroom while I was pumping that day but no one said anything, and I just kept telling myself that I was doing this for Nora. When I got home that evening I opened my bag to put my milk in the freezer only to find that I hadn't closed the bags tight enough and they had spilled out everywhere. Nice. I hadn't done it for Nora, I had done it for nothing.

Thankfully the aforementioned awesome bosses said they would get blinds for my office window so I can pump in there - and no, I most certainly did not tell them it was because I was about to be black listed as the Colman Building Perv.

I hope any men out there reading this really appreciate what working mothers have to go through!

Dots and Spots

When I was growing up I had a very hard time with "dots". Dots were uncomfortable spots on my clothes that would annoy me - like a scratchy tag or the seam on the toe of my sock that would squish into my foot when I put my shoe on (the worst offender). I was notorious for throwing tantrums at the drop of a hat if I had a spot, even stopping in the middle of crossing the street to take my shoe off and fix the spot. For the most part my parents thought it was funny (and have pictures of the tantrums to prove it), but to be honest it really drove me crazy. I even went through a naked phase because the dots bothered me so much. My aunt and cousins in Orem know first hand about this phase - they were babysitting me while my parents were on vacation and I insisted on playing outside....naked. My aunt let me because she figured I'd get embarrassed after a couple minutes and come back in, but nope, I stayed out there all day and had a sun-burned butt to show for it.

As I got older I realized there were lots of other weird OCD things that I have. Some of them I have grown out of or overcome (I can sometimes walk on grates and/or cracks on the sidewalk...sometimes there is no way around it in Seattle), and some of them have actually gotten worse as I've gotten older (uneven blinds will be the death of me), but I always swore that when I had kids I would always take their "dots" seriously, and I would make sure my hubby did, too.

Harper does not have dots...she has "spots". And I swear I did NOT teach her!! About a year ago she started talking about spots, and coincidentally, they were usually on her feet. I am always very careful about how I put on her shoes, and if she says she has a spot I take them off and try again. I have also given Tom strict instructions, and he is very patient and loving about it. Probably because I still talk about how traumatic it was when no one would help me with my dots and just laugh at me.

Anyway, last Sunday was kind of a rough day. Harper has been having a hard time going to sleep at night, which makes her more prone to tantrums during the day. It is odd for me to deal with because she has never been one to throw tantrums or not sleep. I like to think I do a pretty good job of staying patient and helping her work through whatever issues she's having, but Sunday I was exhausted and really couldn't handle it. Tom had left to go to church meetings, but I called him and asked if he could come home and help me. I assumed he was going to just stay home and help out, but he decided to take Harper to church w/ him and give me some time alone at home. I thought that was really sweet of him because 1) Harper LOVES church and perked up as soon as I said she was going to church w/ Daddy, and 2) I really wanted some time alone.

When Tom got home I had Harper almost ready, she just needed to get her shoes on. He was already running late, so I was trying to hurry as fast as I could, but Harper said she had a spot. I tried to fix it a couple of times, but each time I put her shoe on the spot was still there.

And here is how I know I married the best man ever:

Tom picked up Harper and patiently asked her where the spot was. He took off her shoe, examined the tights and asked me if there were any other tights she could wear. Her other pair had dirt all over them, so he took off her tights, got a pair of scissors, and started cutting back the seam as much as he could so the spot wouldn't be so big. By now he was probably going to miss most of his meetings, but he took his time and kept telling Harper he would fix the spot. Finally he got her tights back on, put her shoes on and asked her if it was ok. Harper walked around for a second, nodded, and off to church they went.

And THAT is the proper way to deal with spots and dots.

Nora Evelyn

Almost three weeks ago on Friday, February 13th (my birthday!) I gave birth to Nora Evelyn. My actual due date was just two days ago, so she was a bit early, but everything went well and she was (and is) absolutely perfect. It was kind of a crazy experience doing it au naturale (no epidural), and minutes after I gave birth I made Tom promise me that he wouldn't let me do it again. He kept saying "But you did it! You did such a good job!", to which I yelled "NO, PROMISE ME!!" But honestly I felt great five minutes later, it was such an easy recovery.

Having two kids is really not as hard as I thought it was going to be, but there is definitely a rather lage lack of sleep. With one baby you can just sleep whenever she sleeps, but with a toddler and a baby that's not really possible...although I will admit to turning on Sleeping Beauty for Harper and falling asleep on the couch more then once.

Harper is such a sweet big sister, and I swear she can already communicate with Nora. She is always telling me what Nora wants: "Baby hungry," or "Baby sleepy," and just this morning she told me "Nora poopy", and indeed she was! When Nora cries Harper runs to her side to calm her - sometimes with "ssshhhh's", sometimes with tickles. She also love "taking naps" with Nora (I don't actually let them sleep together, but Harper likes to lay in her bed and then asks me to put Nora next to her to "take nap"), and even better, taking baths with her.

It is funny because I really thought I only wanted two children, but having Nora makes me realize I want another one....some day :)

Grandma Lee

After a year-long battle with cancer, my Grandma Lee passed away two weeks ago. Although it was not unexpected, it was a bit sooner then any of us anticipated - Tom and I had planned a trip to Utah in May to see her one last time and have her meet her newest great-granddaughter. When I found out she had days to live I was extremely depressed, especially knowing I probably wouldn't be able to go to the funeral, being almost 8 months pregnant. While part of me was glad I had last seen her when she was healthy, I mostly felt guilty and upset that I hadn't kept in better contact with her over this last year which I know was pretty much hell for her. I had the best intentions to call on a regular basis, send pictures of Harper, etc., but as always, time seemed to slip away too quickly. I have gotten through the last couple of weeks by remembering some of the really wonderful times I had with my Grandma.

Grandma was rather quirky. Her OCD and shopoholic-ness (yes, that's a word) combined for a condo-full of Ferragamo shoes, Lladro figurines, souvenirs from all her travels, and probably every book ever sold at Deseret Book. She kept everything, including shopping bags from the 50's, which I'm sure held some sort of sentimental significance to her....or maybe she just liked the bags...I can understand. Many things she bought never even got opened. When I lived in Orem I visited her a couple times a week - I'd pick up her mail, help her with her computer, and watch Wallace and Gromit with her. The first week I was there she got a Lladro box in the mail - I was so excited when I saw the box I ran up the stairs to her condo and said "Let's open it!!" "Oh no," she said, "just put it on the table with the other mail." I lived there for 4 months and it was in the same place the day I left. One day I jokingly asked if I could have it since she wasn't going to use it, but the very idea was rather appalling to her. Her reaction still makes me laugh.

Growing up, Grandma would come visit once a year. She always had the same suitcase and overnight bag, which Erica and I called the present bag. Each visit she would pull out something wonderful for all of us from that little flowered bag. Following the presents came the hugs, which were almost as good as the presents (that's saying a lot for a 6 year old girl with a new Strawberry Shortcake doll in her hands). She combined the perfect amount of squeeze and squish for the ultimate hug - and she always smelled lovely.

Grandma loved animals. When I was 8 she got a tiny black poodle named Sammy who she doted on and adored until he died in her arms just a few years ago. She had a horrible time with his death and didn't even want to let him out of her arms. My cousins surprised her with a cat, Lucy, to keep her company after Sammy died, and she quickly became a much-loved family member. Grandma said she could sit on her chair and watch Lucy play all day, and it was always fun to hear her stories of how Lucy could climb all the way to the top of her bookshelves. Pets were always treated as part of the family - when Grandma wrote letters (which she did very often) they always included love to Truman, Oliver and Scout.

The last time I saw her was Thanksgiving 2007 when she came to visit. After dinner I was talking about a certain frienemy who kept making inappropriate comments about me waiting "so long" to have kids and wondering why I wasn't pregnant again (Harper had just turned 1 at this point). Grandma patted my hand and reminded me that it was about "quality, not quantity", and that my "timing" was "no one else's business." Over the next year whenever anyone would ask me when I was going to have more kids I would smile and remember what my Grandma said.

If I start to get too sad thinking about Grandma, I always imagine her now with Grandpa, who died when she was about 5 months pregnant with my dad. I will miss my Grandma dearly, and I'm sad she didn't get to meet my baby, but after 60 years missing her sweetheart I'm glad she finally gets to be with him again.