Thursday, June 27, 2013

Our last few weeks...

The last two weeks have done a toll on my emotional and mental state. On a Friday afternoon, as I picked up Ayla out of her swing, I noticed a small, round, red mark on her arm. It looked similar to what you would get if you had pressed your skin against something for a period of time. I didn't think much about it. On Saturday, I noticed it was still there and did a quick check over the rest of her body and did not notice any other spots. Our initial reaction was ringworm, or just a bug bite. We just decided to watch it and see.




On Sunday, my sweet, happy baby was a grump! I gave her a bath (one of her favourite things) and noticed 16 other spots all over her body. The spot on her arm had grown. We called the paediatrician and since it was the weekend, were responded to by a nurse at Children's hospital. After my description, she had no clue what it was, and since we had an appointment the next day with our paediatrician  she just recommended we take her in when scheduled. 





On Monday, I took her in to the doctor. There was little change in her skin. Her doctor had no idea what it could be, told me there were "no diseases associated with that type of rash" and made me an appointment at a dermatologist at Children's Hospital.

On Wednesday, we went to the dermatologist. Her rash had worsened.


The dermatologist took a quick look at her and asked if he could take a skin scraping of it. I agreed, and he left the room to get his supplies. He was gone longer than he should have been. When he returned, he had additional doctors with him. They started asking me if I had joint pain (I occasional do in my left wrist) and any history of autoimmune diseases in our family (my maternal aunt and grandmother). They began to explain to me that they thought Ayla had what is called neonatal lupus. Here is a quick rundown from the very little info found online:

Neonatal lupus (NL) is a passively transferred autoimmune disease. It occurs in about 1 to 2 percent of babies born to mothers with autoimmune disease, primarily systemic lupus erythematosus (SLE) and Sjögren’s syndrome, and antibodies to SSA/Ro and/or SSB/La [1,2]. However, many cases occur in children of mothers who have the same autoantibodies, but who do not have symptoms of lupus or other autoimmune disease at the time of the baby's birth. About half of these mothers go on to develop autoimmune disease (more commonly Sjögren syndrome than SLE) [3]. The most serious complication of NL is complete heart block (about 10 percent have an associated cardiomyopathy at the initial diagnosis or develop it later). (Source: http://www.uptodate.com/contents/neonatal-lupus)

Obviously, it is a very rare, sometimes serious condition. The hardest part for me to hear was "heart block" which led to the doctor ordering an ECG of Ayla's heart. He also ordered blood work on her as well myself. They asked if they could show Ayla to the students in the office that day and when I agreed, they brought a room full of them in. They looked at her, touched her, and took pictures of her. It was very overwhelming, and I was immediately concerned with how rare this was, and what it meant for my future, as well as Ayla's.

The ECG and blood tests went well - my Ayla is a trooper. She just smiled up at the nurses who were taking her blood - of course she cried too for a bit - but she did so good. We were told we would know the results of the ECG the next day, as well as her liver functions (another neonatal lupus complication). The next 30 hours was a pretty rough waiting game for me and Chase. I was pretty much a wreck and spent that entire day crying. I could not get over the fact that my perfect baby could have something wrong with her heart. I wasn't even thinking about myself at this point in time.

My prayers were answered when we received the call from her dermatologist saying her heart and liver were good! At that point, I thought that anything else we would face head on and could handle. As long as her organs were alright.

It would take 6 more very long days of waiting until we got the next set of news. In that time, her rash came and went. Her original spots disappeared. She got new ones - mostly on her legs. After hearing Ayla's heart and liver were okay, I became more concerned with my health. As my concern heightened, I began to develop symptoms of Lupus. Not only did my left wrist start to hurt, but the right one as well (never happened before). I went for a run one night and could not finish it because my knees and ankles started to hurt. My fingers and toes started tingling. I woke up drenched in sweat at night (not normal for me). I felt like I had a fever, but, each time I checked, I didn't. My skin felt like it was on fire all over. All symptoms reported in Lupus patients. Lupus flares can be brought on by stress, so I was pretty convinced at that point in the time that I did have Lupus and was experiencing my first "flare". I was worried sick.

On Tuesday afternoon we received a call from the dermatologist. They had tested Ayla's blood for SSA/Ro and SSB/La antibodies - what she would have if it was neonatal lupus. Her test was negative!!!!! They had also tested my ANA - antibodies that are usually present in people with autoimmune disorders. It came back 1:40 - essentially the "lowest" positive it could be. So low, a lot doctors consider it a negative. Up to 50% of the popular could have low ANA results and be perfectly healthy. This was all incredibly good news - and led me to go home and research anxiety symptoms. Lo and behold, all of my symptoms were also symptoms of anxiety. They started to lessen immediately, and after a night of relaxation, I woke up the next morning feeling 100% better. Some of the symptoms have kept coming and going - but, I know it's just me being anxious and stressed.

Although we had received good news, her dermatologist was not convinced. He ordered my blood to be tested for the SSA/Ro and SSB/La antibodies to do a "double check". We just got those results back a little bit ago, and they were negative. It was such a relief hearing that.

Where we are today: 
Ayla's rash comes and goes. Although it doesn't have the "normal" appearance of infant mottling, I am thinking that may be what it was. Yesterday morning, she had no visible circles on her. We went to McDonalds for lunch and I noticed lots on her legs! It was very cold in there. Her dermatologist disagrees with the mottling theory because she would have had it from birth and it doesn't take on the regular appearance. I say that from birth - she wore long sleeves, sleepers, blankets, etc. Just as we've gotten into the heat wave, she has gone from hot to cold, hot to cold as we move from indoors to outdoors over and over again. Mottling can occur in new babies because their circulatory system is still developing. Although this might not be it at all - I do wonder if it is something similar.

The doctor no longer has any evidence that her condition is neonatal lupus or that I am in any more danger of developing an autoimmune disease than any one else in the world. 

We are in a "wait and see" mode. Since it does come and go, she is acting and eating fine, her heart and liver checked out good, and she is as happy as can be - I am not overly concerned at this point in time. I will take the wait and see approach and see what happens. Hoping it's just some weird fluke thing and will go away as her body matures and develops. 

If you read this whole thing - Wow! Thanks for sticking with me through it - and thanks for your thoughts, prayers and good wishes through the last few weeks. We are no closer to a diagnosis than we were two weeks ago when the first spot appeared, but, I am feeling much better about things now










Monday, June 17, 2013

2 months old? Really?

Time is really flying around here! Ayla is 2 months old already -- Wow! A lot of things happened in the past month -

*Ayla really developed her cute little smile. If she's not sleepy, and you're talking to her, there's a pretty good chance she is smiling. She also started cooing and talking back.



*We took our first trip as a family of four to Glenwood Springs over Memorial Day. We went with Opa and Stephanie and had a blast. Ayla did pretty good for her first trip away from home. We went hiking, hung out at the hot springs, walked around town a bit and just hung out! On the three hour trip back home, neither kid made much more than a peep. That's a sign of a successful trip! 





 *Chase bought me a new car for my birthday/anniversary. It's a 2013 VW Passat - and Ayla loves it ;). 

*We took Ayla to my Grandpa's grave for the first time. He would have loved her so much...



*I rejoined the photography world and did a few photo shoots. Unhappily. I really do hate leaving my Aylabee! 

*The Nut graduated Kindergarten! 


*Hunter and I had to say goodbye to two of our best friends as they moved across the country. 




It was a good month. Being a Mommy to these two is the greatest blessing ever. They are amazing!