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. 

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!

Happy 1 Month Ayla Kristeen!

I can’t believe my Ayla is a month old. My pregnancy took forever - it felt like years as opposed to months. Each day dragged. And then Ayla arrived...and the last month has flown by so quickly. I am so in love with my little girl. She is beautiful, amazing and perfect in every way I am trying desperately to cherish every moment with her, enjoy her every chance I get, and take photos of her constantly. I never want to forget this first month.

I truly love being a Mommy - and I love this newborn stage. I wish I could keep her like this forever. I could get up with her two or three times a night for the rest of my life I think. I love staring at her fluttering eyes while our house is dark, still and silent...knowing I’m the only one who gets those moments. Knowing that the bond I’m making with her during those quiet hours is one that will never be broken.

I love having a son - my bond with Hunter is amazing, and I love the little boy he is! At 6, he is curious, funny, witty, and oh so sweet! I’ve loved the past six years so much that I desperately wanted another boy so I could do it all again! And then Ayla arrived...I can’t imagine not having a daughter now. While Hunter is all rough and tumble, Ayla is delicate and serene. While both equally amazing, moments with her are so different from my moments with Hunter, and I’m cherishing every bit of it. I feel like I have the best of both worlds right now - my crazy and fun son, and my sweet and calm daughter. How lucky am I?

At a month, Ayla is thriving. She’s developing her social smile (which she’s reserving just for Mommy at this point, yay!!). She’s cuddly and snuggly and loves to be held. Her next favorite place to be is in her bouncer! It can almost always make her happy! She loves bath time and is already kicking at the water and trying to play. She doesn't mind water in her eyes. She hates getting out of the bath, but she looks adorably cute when she does. Her hair curls when it’s wet and I love it!

Ayla is such a happy baby! She really only gets upset when she’s hungry or overly tired - and she’s pretty quick to satisfy. She doesn’t cry in the middle of the night - just squeaks loud enough to wake me and let me know she’s ready to eat! In the beginning of the night, she will go 4, 5, 6+ hour stretches before she’s ready to eat, and then she’s up every 3 hours after that. I think my middle of the night feedings with her are limited, and I imagine she will start sleeping through the night sometime in the next month or two. I can honestly say that I don’t know that I’m ready for that!

My days home with her can be busy as I try to work, as well as get our errands done and keep up with the house - but, we have our quiet time together where I just sit and stare at her. I’m looking forward to summer and getting to do fun things with her and Hunter - but I will miss my quiet days with her as well - just knowing that I will never get these moments back. I’m thankful for the one on one interaction and that I’m not too busy to enjoy her every move.

Ayla - I can’t believe it’s been a month. Thank you for coming into my life and allowing me to be your Mommy. I can’t imagine a daughter better than you.

My Ayla Kristeen

Two weeks ago, right now, I was sitting in a labor and delivery prep room with my husband. I was only freaking out slightly at this point. My blood pressure had finally dropped back down. My contractions were coming every few minutes and getting more and more painful, but that was the last thing on my mind. All I could think about was that my Ayla was coming...and soon!! 

Our birth story starts a few days earlier in my opinion - on Sunday night. After getting Hunter to bed, like our normal routine, Chase and I went into our room and sat down and just chatted about whatever was on our mind. That night, Chase was telling me about his upcoming week at work - how crazy it was going to be trying to get a everything he needed to get done by the end of month wrapped up so that he could spend time with me and Ayla after she was born. Although I had been desperate for her to have an early arrival due to how sick I had been, and how much pain I was in - I decided then that I could make it 7 more days. It was only 7 days. I had made it so far - 7 days seemed like nothing. I was just going to try and enjoy my last week ever of being pregnant. I'm pretty sure Ayla heard us talking.

On Monday around noon, I started having regular, painful contractions. They were 10-15 minutes apart, and gradually moved into my back. I was in quite a bit of pain for the rest of the day - nothing would make the contractions go away, but, they never got any closer together. I finally went to bed around 10PM. The next few hours, I was constantly getting up to go to the bathroom. I just kept feeling like I was "leaking" - but only a tiny bit. Around 3AM, I woke up and had bad cramping. It was consistent though and wouldn't go away. I got up and hung out on the computer for awhile. At one point during the early morning hours, I felt like I all of a sudden was "leaking" A LOT. So I got up and ran to the bathroom - a gush of fluid came out - but quite honestly, I had no idea if my water had broken, or if I was just peeing and no longer had any control over my bladder. I was totally confused! The cramping was still consistent - just a constant, dull, pain. No time-able contractions to be found. 

I had a doctor appointment that morning at 9:30, so I decided just to wait until then and get checked out. Our morning continued as normal - getting Hunter up and ready for school. There was a snow storm the night before, so we had a few inches of snow to deal with as well. Lots of fun clearing off your car while you are in labor ;) - I was really missing a garage that morning! Or at least the covered parking spot I always leave for Chase. 

I got into the doctor about 20 minutes early - I had given myself plenty of time to get there with the snow. I told my nurse right when I got in that I thought my water might have broken, but I wasn't sure, and she took me back right away to get checked. My doctor came in immediately. I started to wonder why I didn't tell them my water had broken every week - the lack of waiting was super nice!! My doctor did an quick test to test the PH levels right in the exam room - he told me it was negative - but he was going to go look at it under the microscope to make sure. I started to calm down slightly as I was pretty worked up before that. I thought to myself "oh okay, good. We still have a week. We're good." My doctor left to go do his testing. I sat, texting Chase updates and waiting for him to come back to do our "normal" appointment routine. 

A few minutes later, I heard my doctor start to talk to his scheduling lady. I wondered to myself why he was talking to her. I couldn't really make out what he was saying, so I just sat there with my ear glued to the door - finally I heard him say "Holly Anderson" and I FREAKED out. My heart rate sky rocketed. All of a sudden, I was no where near ready to have a baby. He came back in to tell me and then quickly left to keep trying to schedule my CSection. My nurse came back in and took my blood pressure again seeing how I was freaking out. She tried to get me to relax. Ha. Good luck with that. I kept texting Chase. 

They decided on a 12:30 CSection since I had been smart enough to not eat or drink anything that morning. It was 9:30. 3 hours. Holy crap. 3 hours. My nurse walked me over to labor and delivery and turned me over to the nurses. I was still freaking out. They took me into a prep room to wait. I was still freaking out. I called my parents and arranged things so they could go pick up Hunter from school. I called Chase's Mom. And then I kept freaking out. 

Chase arrived really quickly, and just having him there calmed me immensly. I was able to relax a bit and finally got my blood pressure down :). The next couple of hours were mixed with answering texts and phone calls, answering questions from the nurses and doctors, getting prepped and having the vein in my hand blown out and waiting. Oh - and watching Chase eat in front of me. Twice. Thanks babe. 

 12:30 rolled around pretty quick, and I started freaking out again. :). They came and got me and rolled me to the OR. At some point, we dropped Chase off to wait until I was prepped in the OR. Watching him walk away immediately caused me to panic again. I knew legally he couldn't stay with me, but I would have paid any amount of money at that point if they had let him...I was a basket case without him. They got me in the OR, did the spinal and quickly got to work on getting everything going. My anaesthesiologist continually asked me if I was doing okay. I continually told him "yea, I'm just freaking out. I need my husband."  I was biting the inside of my lip like crazy - it took a full week to heal that wound. I went from being incredibly nervous, panicky, and anxious to a total calm state. Ahhh - thank goodness for whatever drug the good doctor put into my IV to get me to stop gnawing off the inside of my lips. FINALLY, Chase arrived. I didn't even really care about anything after that point. 

The surgery seemed quick and easy. It is pretty crazy to be awake, and feel that they are cutting, digging, and pushing around your insides, but not have any pain from it whatsoever. The lights above me were reflective and if I looked up, I could see exactly what was going on - although I tried to advert my eyes for the most part. Eventually they announced that they were about ready to pull her out and out came Chase's cell phone (ugghhhh...) and I looked back into the lights to see if I could see her. And then there she was. She didn't cry right away and I remember asking over and over again "Why isn't she crying? Why isn't she crying?" but no one was listening to me...and then she screamed and it was all good! A nurse brought Ayla over to see me and she was so completely gorgeous - amazing how it's so easy for Mom's to look right past all the blood and goo and just see a perfect baby. She was crazy beautiful! They took her off to get her wrapped up and Chase followed, but they brought her back to me all bundled up really quickly and I was able to hold her. I know I kept thinking I was going to drop her because my arms seemed so awkward, but, she fit in them perfectly. They let me hold and stare at her for a few tear filled minutes. I had waited SO long for her - it was amazing having her in my arms. Everything felt right with the world right then. 

The nurse came back to take her after a little bit to clean her up, and Chase left with them. But I finally was content with him going and stayed calm. 

It seemed to take them forever to get my tubes tied - my doctor told me when he had each side done and then I would ask "Are you sure you did it right?!?" He must have thought I was hilarious. My anaesthesiologist started telling a story about a time when his son got hurt and there was blood all over the house, which prompted me to tell them the story of Miley's happy tail and my recent experience of coming home to a house looking like a murder scene. What an odd thing to discuss while you are being operated on...

Eventually, everything was finished and they wheeled me into a recovery room where I waited for Chase and Ayla to come back. That part took forever - I now know Chase was busy showing her off to the world - but at the time, I wondered what was going on, what was taking so long, was she okay? Finally they came to see me and we were able to do skin on skin and try our first attempt at feeding. 

After another hour or so, they wheeled me off to my room where my parents and Hunter were waiting. Hunter got to hold Ayla right away - watching him with his new little sister - totally in awe of her - just melted my heart. All of a sudden - our family of four was complete and everything was perfect in my world. 

I've done a lot of complaining over the past 9 months (just ask my husband...). Pregnancy is not an enjoyable journey for me - but now that we're almost done (11 days!!!), I wanted to write down all the things I've been thankful for (in no particular order...)

My husband. See the part above about me complaining. Through it all, Chase remained positive and supportive. In the beginning, when I was so weak and dehydrated - he brought me whatever food I asked for (countless Otter Pops in most cases), rubbed my back as I threw up even when I tried to push him away,  and told me over and over again that I could and would get through it. As I was able to hold more food down, the hip pain quickly settled in and he continuously told me to get off my feet while he took care of the household tasks, gave me massages every night, normally without being asked, and helped me stand up and steady myself every time I needed. The further along we got in the pregnancy, the worse things have gotten, and although I know it can not be easy for him to go to work all day and then come home and deal with me and my ball of complaints, he just gives me hugs and holds me when I cry and reminds me that I've already gotten through so much and how it's almost over. I'm eternally grateful for him and the love, support, and dedication he has shown me through this journey.

My son. August was a month full of changes for me - but for Hunter as well! We went from being by each others sides through most of every day, to him starting Kindergarten full time. He also dealt with losing some of his closest friends as we stopped nannying and finding out he was going to be a big brother. All in a matter of weeks. And yet...he has dealt with it all far better than I could have imagined. He loves school, and excels there. His teachers (like most people we come across) love him. At home, he is helpful, sweet and understanding. During those early months, he took care of me far more than I took care of him....joining right along with his Dad to bring me food in bed and tell me how much he loved me and that it was okay that he was taking care of himself. He has grown tremendously in the past year, and I am so proud of the "big boy" he is becoming. I can not wait to watch him with his sister...

Our families. The support they have shown us has been tremendous - although I expected no less knowing who they are. We are so blessed and lucky to have them - for our kids to have such wonderful grandparents, aunts, uncles and cousins.

My friends. Specifically the two who always tried to keep me laughing and smiling. For all the support through tears that sometimes seemed constant. For giving me permission to cry. For continuously checking in on me to make sure I was okay. They helped to keep me on the outskirts of depression rather than in the middle of it - and I'm forever grateful to that!

My clients. Giving up parts of my business was, and still is a big struggle for me. I'm thankful for all the clients who have become friends who supported me through this. I'm thankful for all of their support and understanding, as well as their dedication to me. I'm thankful for all the people who have inquired about when I will be back and have started setting up summer sessions - letting me know that they will still be around when I come back.

My doctor and his staff. They gave me a safe place to fall. In the beginning, my nurse called me every day to see how I was doing - she went above and beyond what I would have ever expected. My doctor called me to make sure I was okay. When I broke down sobbing in his office, he hugged me and told me it would be okay. He understood what I was going through. He never tried to minimize it. I'm really thankful for that...

Zofran, B6, Unisom, Reglan. Progesterone.  Drugs that kept me from being hospitalized  Drugs that kept me going. Drugs that kept Ayla alive. I am not a "pill popping" person. I dislike taking anything not deemed necessary on a regular basis, let alone during pregnancy...but my regime of drugs is what continues to get me through. Zantac has also been a good one lately :). I just wish they were a little bit cheaper ;).

Otter Pops. When all else failed, I could almost always hold down at least part of an Otter Pop. Being able to get hydration from them during the early months kept me from having to get IVs.

The tree at Hunter's bus stop. Early in the fall, our HOA guys cut half of it, leaving me a nice stump that is waist high to sit on every day while I wait for Hunter. It seems like a silly thing to be thankful for - but on the days where I can barely hold myself up, the stump does it for me, and I'm thankful or that.

Hunter's teachers. My involvement in Hunter's school isn't even sort of what I imagined it would be. I chose my job with the understanding and intention that I could spend a good amount of time in the classroom helping out and be active and involved in Hunter's education. In reality, I haven't spent a second volunteering - and I feel incredibly bad about that. But I also know that Hunter's teachers are wonderful, are doing a great job, and have provided him with the tools to succeed when I haven't been able to.

My Facebook Birth Club. A bunch of hormonal, pregnant girls all due about the same time as me! Having others know what I'm going through and being able to complain and get support from them is wonderful. And knowing that I'm not alone in my struggles! I'm thankful for the friendships that have been built, and all the healthy babies that are arriving each week!

And last...but certainly not least...Ayla. She is certainly not the nicest baby to ever exist in a womb, but she is mine, and through all the pain, discomfort, nausea, vomiting, and overall suffering that being pregnant with her has caused, I'm thankful that I am being blessed with her - that she is mine, and I have been able to be on this journey. We didn't know that it would happen...I feared we would lose her before we knew she even existed...but her and I are fighters and we've come a long way together already. I'm excited for her future and to get to know my daughter.

Getting There...

Although it was over six years ago, I clearly remember at this point of time in my pregnancy with Hunter that I was terrified. Terrified I would fail as a Mom, that having a baby would be harder than I imagined. Terrified that a baby would tear Chase and I apart. Physically, I felt pretty good in my pregnancy. I had the minor aches and pains, but the worst of it was the very temporary charlie horses I would wake up with in the middle of the night. Emotionally, I was just terrified that I would screw up being a Mom. I was only 20. Chase was 22. Our relationship was fairly new in the fact that although we had been dating on and off since I was 16, we had only recently started living together and had taken our relationship to that next level. We were still both immature in a lot of ways, had a lot of selfish teenage tendencies and were still trying to figure out how to best make "us" work. 

Fast forward six years. Being a parent came naturally to both Chase and I, and I feel like we've done an excellent job with Hunter so far. He's a great kid. Everyone loves him. He's always been "easy." Our most serious problems usually come at dinner time when he fidgets around and doesn't want to eat his food. Wow. Tough one, right?? Our relationship currently feels so stable to me that if our entire world got knocked around, we would still pull through just fine. We are in a much different place this pregnancy. Financially, we are good. Emotionally, we are good. Our life as a family of three has been pretty easy for the past several years. We have 28 days until Ayla gets here (hopefully less!!!) and I'm not at all scared of adding her to our family. In my head, I picture her being just as easy as Hunter. She will come, we will adapt, and life will go on, only now we will have a beautiful little girl to tote around with us on our off road trips as well. 

Chase keeps telling me to expect the worst. Expect her to cry constantly. Expect her to be difficult. Expect that she will be the exact opposite of all things Hunter was and give us a run for our money. Expect that she will show us that in fact, we aren't really good parents...we've just gotten really lucky so far. His motto is prepare for the worst, hope for the best. It's probably a good motto...but I'm just stuck in my little fantasy world that she's going to be perfect and easy just like her brother. I know. I'm probably screwed. But I'll stay in my fantasy - I happen to like it! :)

She's already given me a run for my money - this pregnancy has been rough. This has no doubt been the hardest 8 months of my life. Constant nausea. Constant pain. A variety of drugs keep me eating - but they don't seem to do much else. It's been a rough road. But we're getting there. I'm desperately hoping that my "rough pregnancies" make "easy babies." I guess we have 28 days (or less!!!) until we find out if she has the calm, easy going disposition of her brother, or if she's going to add to our grey hairs! :) Wish us luck! 

Not so sure about Sparkle anymore...

Our family awoke this morning to a pretty awful surprise from Sparkle. Fully recovered from his drinking binge, it seemed Sparkle notched up his creativity a bit after (assumingly) witnessing our family watching a Whale Wars rerun yesterday. To say we were shocked to witness his latest shenanigans was an understatement. We just weren't sure what to do. It's been hours now, and we still haven't showered...hoping perhaps Sparkle will clean up this little mess on his own...

http://www.babyrabies.com/2012/11/inappropriate-elf-contest-2012/